Journal History

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Thursday, April 24, 2003 11:37 PM CDT

On Monday, 4/28/03, there will be a viewing for Tyler (beginning at 6pm) at the John F Givnish Funeral home at 10975 Academy Rd. Philadelphia, PA. 19154. A mass of Christian burial will be held at 10am on Tuesday, 4/29/03 at St. Anselm's Church on Dunksferry Rd in Philadelphia.



Our beautiful, courageous little boy left us tonight. At least God answered one of my prayers and I think it was peaceful for Tyler. He died in our arms at 8:34pm.

The past few days have been very hard for Tyler and he was so brave up until the very end. He broke my heart on Tuesday when he was in so much pain that he couldn't bear to be touched or even move his head. When I asked him what hurt, he just looked at me and quietly said "just me".

We tried to keep Tyler comfortable and control some of his pain. I transfused alot of meds into him today to help keep him asleep. His breathing just got harder and harder for him to do and finally one moment it got easier and then he was gone.

He had a few hours yesterday morning where he felt well enough to talk to us and have us lay with him. He told Dad how much he loved him and made plans for what he wanted to do later in the summer when he felt better. He told me that he was "just so glad" I was his Mom and that he loved me.

Our lives will never be the same. I am glad that my baby is finally pain free and that the awful cancer that would never give up through rounds and rounds of Chemo, radiation and transplant is dead. My baby may be gone but I pray his spirit can finally run free and play.

May God bring us peace

Sunday, April 20, 2003 6:09 PM CDT

Sorry not to have updated for so long. The past week has been very busy plus, we have been overwhelmed with emotions of course. I do not expect to have much time to update except weekly or so. Tyler has many medical needs and we always are with him in case of an unexpected bleed or seizure (not that we want to be anywhere else anyway).

Last weekend Tyler had a lot of bone pain and it took alittle playing with his pain meds to get the right dose down. Thank heavens he has been pain free since last Monday. On Monday evening he started running fevers. These hung around until Friday, at times hovering around 104.

We had to go to clinic on Monday and Thursday for platelets and packed red blood cells and of course those days are long. On Wednesday the hospice team came out and that initial visit took quite a while also.

For the most part Tyler is in bed. He is extremely weak and tired most of the time. Some days are better than others. We have had some very difficult days and a few where Tyler was more alert and talkative. We actually got to take Tyler (in his wheelchair) with our family to the New Jersey aquarium this past Tuesday. He really enjoyed that.

It tears at my heart to see my once vibrant, athletic boy so weak he needs help sitting up or lifting his legs onto the bed. We can see the sorrow in his eyes when he watched the other kids run and play while he was in his wheelchair. He still won't complain though and no matter how he feels inside, "fine" is what he always says when you ask him how he is doing.

We deeply appreciate the prayers and messages of encouragement. I rarely get on the pc for more than a few minutes a day so please understand if I do not respond to your e-mail.

Love, Noel

Friday, April 11, 2003 3:10 PM CDT

This is the hardest entry I have had to write. We found out yesterday that Tyler's cancer has returned with a vengence. His blood is already overcome with Leukemia blasts. In hindsight, I guess this is why Tyler has just been so weak and tired.

We have brought Tyler home as we will not have him spend his remaining time in the hospital he so hated. Tyler has been through so much in the almost two years since his diagnosis and the last three months have been extremely difficult. They have taken such a toll on his poor little body that he does not have much strength left.

I can't tell you how much time we have left with our precious boy but, the doctors do not believe it is long. We will continue to go to clinic for platelets so that hopefully we can avoid uncontrollable bleeding. We actually had to make a trip today because Tyler woke up with a nosebleed.

I can't even imagine life without Tyler. We are already overcome with grief. He is so special and deserves so much more than this. His bravery throughout this ordeal has amazed me. He has shown me how to live with such grace and dignity and strength. I wish I was one tenth of the person this little boy is already. He is truly our hero.

Please pray that Tyler remains peaceful and pain free.
Love, Noel

Tuesday, April 8, 2003 7:07 AM CDT

Things went well over the weekend. Tyler did not bleed so we never had to go to the CHOP ER for platelets. We did go to clinic yesterday and his platelets were 11. Of course he needed these. Good news it had been a week since he last had a platelet transfusion so hopefully he will begin to need these less and less.

We have to go to clinic again on Thursday. Still on the twice a week schedule. I hope after next week we can go down to once a week but, that all depends on how often Tyler needs blood products. Thursday will be a very long day as Tyler needs to get three meds. He needs to get the IVIG, Pentamidine and Zenapax. We only needed platelets yesterday and still didn't get home until after 3pm.

Tyler's counts from yesterday were pretty much stable. His WBC is still very low at 2.6; HgB was 11.7 (no PRBC needed!); his weight dropped again to about 51 lbs.

Tyler feels about the same, still low on energy and very weak. A few people have asked about seeing Tyler so I thought I'd better mention again that he is still on medical isolation. He is not allowed out in public (out in the yard is ok) and his visitors must be limited to immediate family. The reason is that his immune system is still very fragile and in addition, his is even more compromised due to the GVHD drugs he is on. This will be for a few more months.

Little Mike is off school today so I think the boys and I are going to bake. Maybe if we make enough stuff we can fatten Tyler up.

Friday, April 4, 2003 8:01 PM CST

Clinic was a zoo yesterday. It seems like it is getting more and more crowded, which in itself is a sad thing. I was able to get Tyler's meds switched. His new anti-rejection drug is FK506 aka Prograff. What a Godsend this is. His dose is two teeny tiny gel caps, twice a day. No more throwing up!! We also changed his sodium from liquid to pill form. Medicine time has now been cut down from 2 1/2 to 3 hours to 1/2 hour.

Tyler's labs were ok. I have to question the docs on Monday (our next clinic visit) about his cholesterol levels. No one has ever mentioned these to me as a problem but, in going over his lab work I noticed both his cholesterol and triglycerides were high and his LDH which is supposed to be around 500 was 3000. Chances are it is related to the IV nutrition Tyler was on for so long. While it is a lifesaver it is extremely hard on the liver and throws alot of things out of whack.

Tyler's platelets were 28k and they decided not to transfuse. The docs would like to see if Tyler's body will rebound on his own. I have to admit, I am curious too. However, I am not looking forward to a trip to the CHOP ER for platelets over the weekend. Let's hope that doesn't happen.

Tyler remains very weak and I threw out the need for physical therapy at home. We'll see how that goes on Monday too. He is eating great though. Yesterday he had two helpings of supper. Today he had two bowls of spagetti and meatballs for lunch and a soft pretzel and water ice for snack.

It has been one whole week since we left the hospital and I see such an improvement in Tyler already. Here's praying another week will get him that much healthier.

Wish the Spring weather would come and stay. It's too cold and damp to get Tyler outside for some fresh air. We did go for a walk by Mom Mom's house in Jersey on Wednesday. Have a great weekend!

Wednesday, April 2, 2003 11:30 PM CST

Things are still going well. Tyler is eating although I know he is forcing himself still at this point and not really enjoying food yet but, I know this will get better in time. He is drinking fluids great so hopefully we won't have to worry about dehydration.

It is still extremely difficult for Tyler to walk. He is so deconditioned and has no muscle mass in any limbs. I am going to talk to the doctors tomorrow about getting a physical therapist to come to the house.

We go to clinic tomorrow. Tyler needs to get his labs checked and get his IV dose of Zenapax, his GVHD drug. I spoke to Ginny on the phone today and we may change his anti-rejection drug from Cyclosporin to FK506 since Tyler throws up at every med for this drug. He is doing well with the others. This med is the one that really tastes bad and has an oil like consistency.

Things are still busy but we getting into a routine. I am almost completely unpacked from the hospital, one more rubber maid tub to go.

Good news on the gut GVHD front is that Tyler actually went two whole days without going to the bathroom. This may sound like something not to be happy about but I am thrilled. His skin GVHD seems to be flaring a little bit though. His arms and legs look sunburned.

Got to run. Have a great Thursday.

Monday, March 31, 2003 11:20 PM CST

Hi Everyone,

Just a quick update because in many ways, we are busier now than ever. We're still trying to work out a schedule and get our routine going.

Tyler woke up this morning with a nosebleed. We got it stopped in about a half an hour and off to clinic we went. Tyler's platelets were 27 which really is good considering he got them last on Friday but, due to the bleed, he got them today. His Hgb was 13.2 which is great.

His sodium level was low and his cyclosporin level was high so we're working on those. His weight was stable and his bilirubin was up slightly today. His skin GVHD seems to be flaring slightly too as he is red again.

Tyler ate dinner really well (noodles, stuffing and some steak). Clinic through off our breakfast and lunch routines as we did not get home until 3pm.

I work with Tyler every day on exercising. I can see some improvement already. It is so sad that a seven year old boy is too weak to climb stairs or walk more than a few feet. It breaks my heart. But, he's tough and pushes himself and I know he'll get stronger every day.

The meds are going pretty well. Actually, Tyler just threw up his one really nasty one. So, I am going to go. Must do a load of laundry and scrub some furniture (I was a little too slow with the bucket).

Have a great day tomorrow!

Sunday, March 30, 2003 9:41 AM CST

It is sooo good to be home. We have been busy getting used to our new schedule so sorry for the late update.

Friday we got home around dinnertime. By the time Tyler's platelets and packed red blood cells were finished it was about 4:30 before we left CHOP. We all were hungry and had to eat and then it was time to start Tyler's nightly routine of meds. We all were exhausted and fell asleep around 10pm. Good thing because Tyler was up at 4am on Saturday. I guess he was still used to the 4am blood work.

Tyler is still extremely weak. He has alot of trouble walking and steps are almost impossible for him yet. I think Tyler is doing fantstic. He drank 35oz of fluids on Saturday, ate 1/2 cup of applesauce for breakfast, a slice of porkroll and some pickles for lunch and a snow crab cluster and two large shrimp for dinner.

He stayed awake until 3pm (remember this was from 4am) and then took a four hour nap. When he woke up, he had a bath and we did some exercises. We watched Spy Kids 2 and did our nightly med routine. He fell alseep around midnight and slept until 9am this morning.

So far the diarrhea is manageable. He only had to go three times yesterday and slept through the night so I am hoping the addition of solid foods doesn't cause a flareup.

We go to clinic tomorrow morning for a checkup.

Thank you all for the well wishes and advice. We really appreciate it. Thank you Doreen, Greg, Tyler and Emily for the balloons outside our door to welcome us home!

Friday, March 28, 2003 0:12 AM CST

MINI UPDATE: WE ARE GOING HOME!! We probably won't get home until around dinner time since Tyler needs both packed red blood cells and platelets to get us through the weekend. I'll update more tonight. Yeah! Thanks for all the well wishes and prayers.

Day +58 (65 days in the hospital)

We might, MIGHT, get to come home Friday. Tyler is still a very sick little boy and has many weeks/months of healing to do but, since things have been stable for a couple of weeks and he is tolerating the medicines, it looks as though they will release us.

We'll need to be back to clinic two or three times a week to check labs since Tyler still requires platelets frequently. Also, they will need to closely monitor his weight, his sodium, magnesium and protein levels and his anti-rejection medicine levels (among other things).

Tyler will still be on medical isolation and will remain so for a few months. A newly transplanted immune system is very fragile let alone one that is still on immunosuppressive drugs.

I'll update tomorrow with the word once I get it. I'd write more but I am exhausted. Let's pray for some good news. Have a great Friday.

Wednesday, March 26, 2003 10:15 PM CST

Day +57 is Thursday (64 days in the hospital)

Yesterday's entry was probably a little flat and short but as I'm sure most of you sensed I was so bummed/scared/worried (you pick the adjective) I just really didn't have it in me to write a whole lot more. Today was a much better day.

Let's see, first off, Tyler's platelets were 17. So, in a way I guess this is good news since he was not 4 like I joked. He got platelets this morning so that means he did go two whole days without needing them. I'm curious to see what they will be tomorrow morning.

Tyler is still taking the medicines like a champ. I kid you not when I say that if it were me, I would not do it. I don't take the stupid liquid cold medicine you get when your sick. I tasted his one med and it tastes like gasoline smells. Plus it is oily and it literally burns going down! I don't know how he is doing it and not even complaining. If I were him, I'd be kicking and screaming. Thank heavens for my sake he is the amazing child he is.

Other good news... as I write this, Tyler has gone to the bathroom only 4 times in the last 24 hours for a total of 250cc (less than 1/2 the volume of yesterday)! In addition, he ate two broiled chicken wings, 1/2 a piece of toast with mayonaise and 1/4 cup of applesauce for dinner. He really worked at doing this because his body really did not want to. It has been almost two months since Tyler ate and I know his digestive tract is still a mess. It took over an hour and many small bites to accomplish this but he pushed himself to eat. I can't even imagine how it must be to force yourself to eat when your not hungry, nothing tastes good and your stomach hurts.

As I thought, the docs wanted to wait and see what happened today with regards to the increased diarrhea. I certainly could understand this. Personally, I have my own theory although I need another week to prove it. The medicince Tyler is on to combat his gut GVHD is Zenapax. After the second dose of this we saw dramatic improvement in him. While he got this med every four days all seemed to go well. This is a med that is supposed to eventually be given weekly, then your weaned off. This was Tyler's first "weekly" dose. I noticed an increase in diarrhea on day 5, more so on day 6 and day 7 was yesterday (the worst). He got his weekly dose of Zenapax yesterday afternoon and today...improvement. We'll see how the next couple of days go.

Well, that's all for now. Have a great Thursday!

Tuesday, March 25, 2003 10:44 PM CST

Day +56 is Wednesday (63 days in the hospital)

Today has me a little worried. Tyler had to go to the bathroom ten times and had over a half liter in volume again. I hope it was just a fluke day. We'll see how tomorrow goes and what the doctors have to say (which more than likely will be "see how today goes").

We switched almost all of the meds over to oral today so that we could watch them for a few days to be sure they are tolerated. It takes about an hour and a half to get them all in. Tyler is on eight meds that he needs to take twice a day (some pills, some liquids, some gel caps), two meds taken as needed during the day and two meds that he will still get via IV at clinic. They are all various dosage amounts. For example, the med that comes in gel caps, Tyler must take 3 gel caps twice a day for that one medicine.

I feel bad for him as some of the meds really taste bad or the gel caps are large or even for the ones that come in small pills, he still has to take two pills to get the right dose. It took a while but he got all the meds down today.

Good news is that Tyler ate about half a bowl of chicken noodle soup today and drank 18oz of water. His Hgb was still 9.7 so no packed red blood cells. His platelets fell to 30 today. Much more of a drop than I had hoped but still no transfusion and luckily no nosebleeds. I'll bet he'll be something like 5 for counts at 4am. Hopefully, he'll make it til 4am without a bleed.

That's about it for today. Pray that tomorrow is a better day. Have a good Wednesday.

Monday, March 24, 2003 6:24 PM CST

Day +55 is Tuesday (62 days in the hospital)

The weekend went really well. Everything pretty much has stayed the same/stable and that is a great thing. Tyler continues to sleep often but is awake more and more each day.

They have switched Tyler's prednisone over to oral and his first non IV dose will be tonight. His acyclovir is going to be switched tomorrow and then on Wednesday his Cyclosporin. He already takes his blood pressure medicine by mouth now and his magnesium. This will still leave a couple others (about four) to switch but the bulk of them will be switched by Wednesday,

Tyler got packed red blood cells on Saturday and his HgB is still 9.8 today so he is holding on to them for 4 or 5 days. Platelets seem to be needed every other day and we need to get them spaced out a little more before we can come home. He got them Sunday night and his counts this morning were 92 so I know he won't need them tomorrow. With any luck he can hold on to them until Wednesday.

The doctors decreased his steroid dose by another 5mg today and are cutting back on his liquid nutrition starting tonight. Tyler is completely off the morphine pump but still requests pain meds a few times a day.

Things are moving along as you can see. With any luck we can come home very soon. We know we will need to be at clinic two or three times a week for a month or so and then that too will taper down but, it would be nice.

Thanks for the prayers and kind words. Have a great Tuesday!

Saturday, March 22, 2003 10:20 PM CST

Day +53 is Sunday (60 days in the hospital)

Today was a good day. I finally feel good enough to say that so I hope things keep going the way they have been. It has been one whole week where Tyler has been consistently better in all aspects. Today he went to the bathroom only 3 times for a total of only 150cc. I can only pray that this continues. What a change from a high of 15+ times and almost 1600cc daily.

His stool is still testing positive for blood but at least it does not look like just blood. It will be a very long time before he is completely healed. The doctors told me the first year will be difficult and he will probably remain on the anti-rejection/immune suppressant/GVHD drugs for at least that long. His little face is round from the steroids. I have to put a new picture up but for obvious reasons, Tyler has not felt much like having his picture taken. Maybe this week.

He was awake for alot of the day. He built a Harry Potter train set (legos of course) with Dad and watched the new SpongeBob show with me tonight. We even were laughing at the show. It was so good to see him smile. He ate about four teaspoons of applesauce again tonight.

We have officially been here two months since we were admitted for transplant on 1/23. We have begun our fourth count sheet. Doesn't it just seem like yesterday that I joked shoot me if we start a fourth? Really, except for two weeks in the beginning of December and two weeks the beginning of January, we have been here since 10/14. We have had every holiday here, Halloween, Christmas, New Years. It's time to go home!

Tyler got packed red blood cells today since his Hgb was 7.7. It has been four days since he last got these so he is doing ok in that respect. His platelets were 59 today and he did NOT get them and did not (except for two quick drops) have a nosebleed. I hope we can get him to needing a transfusion of platelets every other day this week as opposed to daily. Then maybe we could progress to every third day and get out of here. Of course, it is out of our hands. Tyler's body will do whatever it is going to do in time.

Guess that's it for tonight. I haven't thanked everyone for signing the guestbook for a while so thank you as always. It definitely gives me something to do at night and helps keep us going. By the way, lurkers, you know who you are, sign in! Just kidding. I like to tease at least one person I know who reads the journal daily but for some reason known only to her, she hasn't signed. :-) I think if she ever did, I would faint.

Have a great Sunday!!!

Friday, March 21, 2003 11:46 PM CST

Day +52 is Saturday (59 days in the hospital)

Today was another good day. I still get nervous writing that for fear I will jinx the whole process. Tyler's diarrhea was a tad less in volume today. His frequency was up slightly and therefore so was his cramping but they are both manageable and within what I now consider the "safe" range.

Tyler's Hgb was 8.2 and he did NOT get packed red blood cells today (three days with no PRBC) although he will most likely need them tomorrow. His platelets were only 44 even though he was transfused yesterday afternoon. Dr.Bunin decided to not transfuse today in hopes we can get Tyler to at least every other day. Nice thought. An hour after she said this Tyler got a nosebleed that we could not get stopped for an hour. It took two doses of thrombin (a clotting factor that is applied via Qtip) and a whole lot of nose pinching pressure. Needless to say, Tyler got platelets.

The somnolence syndrome actually seems a little better. Tyler probably sleeps about 17/18 hours a day now. I really don't mind this anymore as he looks so peaceful and comfortable. Plus having heard good things from Barb and the doctors, it is not as scary as it was at first.

The toast thing didn't happen last night as Tyler hates the hospital bread but, he did eat about 4 teaspoons of applesauce and about 3oz of chicken broth. No eating today but hey, I was very pleased with that. Plus since his gut is still healing and it is going to be a slow process, I want the introduction of food to be very slow. What's that Bill Murray line from Caddyshack (or is it Stripes?)...no sudden movements

All the other things are still stable: weight, ANC, WBC. They actually decided to check the bili and albumin once a week now since they have been doing well. I've got Tyler up to drinking 12oz consistently daily. He would drink more but I wanted to go slow with the fluids also.

I just want to thank all the hugs and hope people before I sign off tonight. As you may know, Tyler is one of the featured children for March. Everyone has been very kind to send their thoughts and prayers. Tyler gets a kick out of my reading the cards and the little packages that come. Thanks to Joey and his Mom Kathy for today's package.

Have a great weekend, get out and do something with your family. Spring is here!

Thursday, March 20, 2003 8:27 PM CST

Day +51 is Friday (58 days in the hospital)

Things are still going ok. Tyler's diarrhea was up a very small amount in volume (about 80cc). While this is probably insignificant to the docs, I worry about any increase. Frequency wise he remained the same.

If there is a side effect to get, we all know by now that Tyler gets it. The latest is something called sommolence syndrome (Barb any thoughts you have, I'd love to hear since I know Joey had this). Apparently, it is something some people who have had total body radiation run into about 6 to 8 weeks after treatment. All it really does is cause the person to sleep about 20 hours a day. Tyler has been doing this for about the last week even though I had thought he would have more energy now that his stomach is a little better. The docs told me it lasts about two weeks or so.

On the scheme of things, this is one side effect that is not to hard to deal with. Makes for a boring, long day but otherwise I'm not complaining.

We lowered the steroid dose by a smidgen today (only by 5mg). I pray that Tyler's GVHD does not flare up again due to the change. We also discontinued the continuous morphine drip leaving only the bolus available to Tyler if he needs it.

Tyler did not hold on to his platelets and he got a transfusion today. Although, if he can stay at every other day needing a transfusion I guess you could say this is an improvement. His platelets today were 19 down from 60 yesterday.

His Hgb was still ok at 9.1 (makes two days since packed red blood cells); his bili was great at 1.0; his albumin was stable at 2.5 and his weight was stable. WBC was 5.8 and ANC was 5452.

Tyler got two surprise packages today. One from our friends Betsy and Kyle who we have roomed with in the past during treatment. Thank you guys for remembering us. It was very nice of you both. Traci (Kyle's primary nurse) was our nurse today and got a kick out of the package. She wasn't too keen on the idea of Tyler throwing the Koosh balls at the nurses though! Ha! The other was from a junior hugs & hoper, Jacob, whom we have never met. Thank you Jacob (and Mom). Tyler has alot in common with you and when he feels better I am sure he will like to write you.

Well, got to go. Tyler just woke up and is requesting a piece of toast!! Have a great Friday and a great weekend.

Wednesday, March 19, 2003 10:49 PM CST

Day +50 is Thursday (57 days in the hospital)

Today makes five in a row for things going ok. The volume and frequency of the diarrhea remains unchanged. It has been almost exactly the same for four days in a row.

Still no word on the rotovirus. I was told there was a "rapid" test to determine the answer but apparently it is not so rapid. Kidding aside, it seems they used to have to wait a week or more to see if the virus grew out. Now they can add an enzyme or something to the culture to speed up the process. This is the "rapid" test. Although, for some reason the rapid tests aren't done daily, they are done every few days. Regardless, it certainly looks like the IVIG did something to help Tyler out.

Everything else remained stable- weight, bili, albumin. His Hgb was 9.9 (remember he got packed red blood cells yesterday) and platelets were 60 (got these too). The docs decided to stop doing labs every 12 hours and wait to see how Tyler does in the morning with regards to how well he is holding on to the blood products.

I am pretty confident that he'll hold on to his Hgb counts for a couple of days. Platelets, I am not so sure of. He has been needing these at least every day until only the past four days. That is the next hurdle to overcome. Tyler has to be able to hold on to and not need any blood products for at least three days (consistently) before they will think about sending us home.

Dr. Bunin is thinking about starting to wean Tyler's steroids down slightly towards the end of the week. The following things need to happen in order for us to get home: the diarrhea has to remain at (or lower than) the volumes he has now; he needs to drink and tolerate at least 18 0z of fluid a day to keep himself hydrated (he is about half way there now); very light foods need to be introduced and tolerated (did not try yet); Tyler has to be able to go at least three days w/o needing blood products; current IV meds need to be converted over to oral and be tolerated; he needs to be weaned off his morphine pump (I had them start this last week since his pain has been better).

If everything goes well with no glitches and that is a BIG if, it would probably be about two more weeks before we could leave. It would take about that long in order to accomplish all of the above.

That's all for now. Have a great Thursday.

Tuesday, March 18, 2003 10:11 PM CST

Day +49 is Wednesday (56 days in the hospital)

Today was another decent day. Tyler went to the bathroom twice again today and the volume was about the same as yesterday. We have not had four decent days in a row for a very long time. I am trying not to get my hopes up but it is hard not to feel good about the past few days.

We all agreed to discontinue the Somatastatin. Tyler has not had a dose since midnight Sunday and so no one thinks the drug is responsible for the turnaround. Now that it is gone, hopefully Tyler's blood sugars will return to normal.

Tyler's platelets were 50 at 4am labs and I had hoped we would go a day without needing them but, by 5pm labs he was down to 23. His Hgb was down to 7.5 so he got both packed red blood cells and a platelet transfusion today.

Tyler is still exhausted and sleeps through the night and probably 85% of the day. I'm sure his little body just needs the rest to heal so while I wish he felt good enough to play, at least he is doing better.

Bilirubin was normal and albumin level was 2.2 (still low but stable). His weight is stable at 25.0 (about 55 lbs) and no fevers.

His one lumen in his broviac was starting to give the nurses trouble drawing labs so they put in a "clot buster" this evening. Hopefully this will clear out the line. Still no word on the culture results for the rotovirus.

Have a great Wednesday.

Monday, March 17, 2003 9:08 PM CST

Day +48 is Tuesday (55 days in the hospital)

Tyler had another ok day today. He actually went from 9pm Sunday night until 1pm Monday without having to go to the bathroom. He only went twice so far today for a total of 225cc (1/4 liter). He has not had his Somatastatin since midnight last night so we are wondering if maybe there is some actual healing going on and not just the diarrhea being masked by the medicine.

His platelets were 24 at 4am labs so he did get platelets today. At 6pm labs they had risen to 85 from the transfusion. His Hgb was 9.3 at 4am and 8.4 at 6pm so another day without packed red blood cells. This makes three days since his last blood transfusion. This is very good news to us.

His billirubin and albumin were again stable as was his weight. His blood sugar level was slightly elevated and this can be a side effect of the Somatastatin so that is another reason to hope that there is healing. I don't want to have to deal with diabetes now. I've asked the doctors to hold off on the Somatastatin until morning to see how he does on his own.

We sent a stool culture off today and the results should be back tomorrow on the status of the rotovirus. It would be great news to have that cleared up.

Tyler was a little more tired today and slept alot of the day. We did take our nightly walk in the hallway before his shower this evening.

I am praying for another decent day tomorrow with some good culture results. Have a good Tuesday.

Sunday, March 16, 2003 9:25 PM CST

Day +47 is Monday

Today was another decent day. The diarrhea increased slightly today but was still better than it has been. All of the other labs are still stable and no fevers.

Tyler was able to enjoy a small water ice today. He is not allowed to eat any "real" food as the gut needs time to heal but the doctors are ok with water ice, jello, etc. in very small amounts.

They will send another stool culture off tomorrow to check for the rotovirus. I hope this comes back clear. Then we would be down to just the GVHD to deal with. If not, there is a chance they will repeat the IVIG via an NG tube again.

Tyler was able to visit with Aunt Terry and Uncle Jim today and Grandmom was here in the morning. His energy level was less today and we didn't take a hallway walk this evening. In fact, he has been asleep since about 9pm.

Another good thing is he actually went a whole day without needing any blood products. His platelets as of 4pm were 46k so I know he will need these early tomorrow (since he drops dramatically, quickly). Also, I see less blood in his stool.

Hoping for another good day tomorrow.

Saturday, March 15, 2003 10:54 PM CST

Day +46 is Sunday (53 days in the hospital)

I almost hate to write this. Although I've disliked writing the majority of the last few weeks entries since the news is always so blah, when I have written about a better day, we've had our hopes dashed big time.

Today was a better day for Tyler. By no means is he feeling himself but, he did feel better today. His diarrhea was half of what it has been daily for the last week. He had enough energy to stay awake most of the day and even was able to build a lego Star Wars ship and Throwbot with Dad.

This evening we took a short walk in the transplant hallway before Tyler's shower. He wanted to walk to stretch his legs and I try to get him up whenever he has be able to. The hallway is not long, only the length of the six rooms. However, this tires Tyler out tremendously. I admire his strength to no end just knowing how difficult this must be for him.

While we are happy with the way things went today we know only to well this could change. But, we'll take it for now. Also, this doesn't mean the GVHD is better. It just means the Somatastatin might be working enough to mask the severity of the symptoms and give Tyler some comfort. But again, this is fine by us. If he can have some comfort while the GVHD is brought under control that would be wonderful.

Tyler held on to his blood products a little better today. His Hgb was 9.8 at 4am (he had received packed red blood cells late last night) and was still 9.1 at 4pm. His platelets which he also got last night, didn't fare as well. They were 77 at 4am and down to 35 at 4pm so he got platelets this evening.

Still no fevers, his weight remains stable, billirubin still normal and albumin rose again today to 2.5 (normal is 3.7). His WBC was 6.4 and ANC was 5632.

Let's hope my update tomorrow is as good. Enjoy your Sunday and the nice weather and Happy St.Patrick's Day!

Friday, March 14, 2003 11:29 PM CST

Day +45 is Saturday

Last night was another sleepless night for poor Tyler (and me, but that's not new). He was up literally the entire night with diarrhea. He was back up to a liter and half today for his total volume lost.

He got packed red blood cells and platelets again due to the blood loss.

They increased his somatastatin in hopes that this may help (so far it has not). We all know that the rotovirus is just not helping matters but, how much this is playing a part in Tyler's poor response is not known. I really just wish this poor little boy would get a break. He sure could use one.

Through it all, he just goes along, never complaining. Trying to sleep in between sitting on the commode. His weight was down again but this time it is lower than when we started treatment. I think Tyler has lost all the water weight he had been holding on to which is good. You can see his ankles and he is less puffy all over. However, since that weight is gone, I think we'll now start seeing just how much a toll this has put on his body with regards to real weight loss. They made some adjustments to his TPN(liquid nutrition) so hopefully the weight loss can be kept to a minimum.

His billirubin remains stable and his albumin is again 2.3 so it didn't drop from yesterday. Still no fevers, in fact, he had trouble reaching normal 98.6 a few times. The poor thing probably has no blood in him.

As I write this it is 12:45 EST and Tyler has not gone to the bathroom since 9pm. I am praying that he gets a good nights rest.

Have a good St. Patrick's Day weekend!

Thursday, March 13, 2003 9:33 PM CST

Day +44 is Friday (51 days in the hospital)

Hi everyone, not a lot has changed here today. In a way, I guess that is good. Staying stable is something to be thankful for in itself (I keep reminding myself).

As some of you have written in the guestbook, we are very weary. I'm sure this tone is reflected in my updates, sorry. I would give anything to write a funny story about our day. Hopefully soon. Also, I've checked some websites of other children who have had GVHD of the gut and while I am happy to say they are currently doing well, the one little boy was in the hospital until day+89. The thought of being in the hospital 96 days (and that would put us only half way there) is very discouraging.

Oh well, need to push those thoughts aside. Thank heavens for the nurses. I really enjoy their company. In addition to giving Tyler wonderful care, it is so nice to have the adult conversation, especially late at night. Tyler's primary oncologist has been wonderful also. She checks on Tyler every day and is always there to answer all my questions and listen to my take on everything. I feel good about the transplant team too. I really believe that they are reassessing the situation a couple of times a day. They usually check in twice a day and seem more open to our observations.

Also, all the entries in the guestbook help to keep the link to the outside world. We really enjoy reading them so thank you all for so faithfully checking in each day.

So, the good things for today... Tyler's weight came down again. Since Tyler was retaining way too much fluid, this is actually a good thing. Tyler's weight today was 25.0 (55lbs) just a pound more than when we came in. However, his muscle mass is definitely decreased. His poor little arms and thighs are so thin with no fat under the skin.

His billirubin is still normal and stable at 1.4 meaning hopefully his liver is doing fine. His albumin has risen for the third straight day, good. When I saw the decrease in his weight this morning I had a feeling this would be up again. It was 2.3 today (normal is 3.7). A normal albumin plays a part in keeping the fluid in Tyler's body where it belongs and not all going to the tissues in the skin. This in turn helps keep the heart rate normal and not tacycardic. Still no fevers today.

His frequency for bowel movements is still high although he was able to sleep through the night last night. His volume is down a little bit. He put out 800cc which is just over 3/4 of a liter. There was more blood today which always concerns me. I had them do a second CBC this evening and Tyler needed platelets, which he just finished getting as I type this.

His counts as of 5am Thursday were ANC 5451; WBC 5.8; Hgb 9.7 (after getting blood very late Wednesday night) and platelets were 41 (23 at 7pm which is why he received platelets).

Wednesday, March 12, 2003 8:41 PM CST

Day +43 is Thursday (50 days in the hospital)

Things are pretty much the same here. The frequency and volume are still high. Tyler got both platelets and packed red blood cells today.

The procedure to put in the NG tube and give Tyler the IVIG orally went well. We gave Tyler a sedative and he really did well allowing us to insert the tube up his nose and down into his stomach. I had to hold his hands still but all in all I was expecting more of an argument. He got another dose of the sedative to keep him comfortable and the tube was removed by 8pm.

He had a tough night last night. Up every hour to stool, so between that and all the sedatives, Tyler slept most of today. The new meds will need time to get into his system and work before we see any improvement but I do hope Tyler gets some relief soon.

His weight and billirubin are stable and no fevers. They increased his blood pressure med again so that should keep the pressures in control. Guess that's about it.

Thanks for checking in and have a good Thursday.

Tuesday, March 11, 2003 9:23 PM CST

Day +42 is Wednesday (49 days in the hospital)

First let me tell you the good news, no blood products today. Yeah! Technically Tyler will probably need platelets at 2am but hey, officially that will be Wednesday so I am not counting it for today.

More good stuff is that while there is no improvement in the frequency or volume of his stooling (sorry to always discuss stooling but, unfortunately, that is the main gist of gut GVHD) there seems to be less blood. Don't get me wrong, there is still blood, just somewhat less. Also, still no fevers, billirubin still in the normal range, water weight not increasing and Tyler generally felt a little better.

His blood pressures have been creeping up so we may need to raise his bp meds yet again. His albumin is still low which in turn still causes occassional tacycardia but this is all doable.

When I discussed the treatment plan with the docs yesterday, I told them I wanted them to be aggressive in Tyler's treatment. Tyler is fighting up a storm and never complaining and we are just not making any head way here. We've held off fevers for now but how much longer can we be lucky in that respect? They assured me they are being aggressive. I wasn't overly convinced but accepted the couple of changes made yesterday as a step in the right direction.

New ballgame today, the transplant team meets on Tuesdays to discuss all the patients and they advised me of a new plan this afternoon. The Cellcept was discontinued and a different drug called Zenapax put in it's place. The Somastatin, Cyclosporin and Methylprednisone will continue and get this you other CK moms, Tyler will be drinking his IVIG tomorrow! This is rarely done but supposedly there is some belief that taking the IVIG orally, as opposed to via IV, will help rid Tyler's body of the rotovirus quicker.

We will somewhat sedate Tyler, insert an NG tube, shoot the med through and remove the tube. He has to take a fairly large dose and it is beyond nasty tasting so the NG tube seems like the best bet.

I'm happy with all of this. I am glad the doctors are challenging themselves to look for answers outside the box. Let's hope that in a week's time we will see some changes for the better that stay around for more than a day or two.

Thanks for checking on Tyler and have a good Wednesday.

Monday, March 10, 2003 7:44 PM CST

Day +41 is Tuesday

Where to start...well, let's see, Tyler is going through blood products almost faster than they can give them. He finished getting packed red blood cells last night at 10pm, they drew labs at 11 and his Hgb was up to 10.0. By 4am labs his Hgb was back down to 7.9 and he needed another blood transfusion. He got platelets last night and they must have been a good match because they bumped his platelet level up to 116,000. By 6pm labs this evening they are back down to 22,000 and he will be getting these shortly.

This is very scary in that within such short time spans he is losing that much blood. As I write this he is well over a liter already for stool/blood volume lost for today.

The new gameplan for now is they have increased his Cellcept medicine from 800mg to 1000mg. This is the main drug for treating the GVHD that Tyler is on. They have added a drug called Somastatin which is supposed to help control gut bleeding. He will continue with the Cyclosporin and methylprednisone (along with a host of other meds to treat various things ie HBP, etc).

There are some other drugs out there that can treat GVHD and they are reluctant to add them just yet because each new immune suppressant drug increases Tyler's risk for infection. Obviously, he is too weak right now to withstand an infection. As the doctors told me today, "If we lose him, it will be because of an infection". Very hard words to hear even though I already knew that. So, I guess I can understand why we hope the current regimen begins to work and no new drugs have to be added.

To complicate things, Tyler's stool has again tested positive for rotovirus. It's just a guessing game to say how much (if any) of the increased stooling is related to the rotovirus. Also, to treat the virus would mean to lift some of the immune suppressant drugs which of course we don't want to do.

Even if the new drug added to control bleeding works and slows down his stooling, while on one hand that is great, it still doesn't mean the GVHD is under control. All this drug will do is maybe, mask the symptoms.

On a happier note, thanks to Uncle Steve and family for stopping by. Even if only to wave through the window, it was nice to see you guys. Tyler was talking again today about how he really wants to go fishing on your boat. I'm sure he can't wait to breathe fresh air again and be around some friends to play. I know how I feel being stuck in a 12x12 isolation room for 48 days and I'm not sick.

I guess that's all for tonight. Have a good Tuesday and pray for the fevers to stay away for a while longer while hopefully the new meds begin to work.

Sunday, March 9, 2003 11:17 PM CST

Day +40 is Sunday (47 days in the hospital)

Every day since Wednesday, Tyler has increased in his volume of stool. Friday and Saturday the volumes were over a liter and today he went over a liter and a half. Also what concerns me is that the stool is getting progressively bloodier. His last episode was almost all blood.

Tyler got packed red blood cells today and continues to get platelets every day and some days, twice a day.

Tyler is so strong, he amazes us. He stayed up today when by all rights he should have been exhausted from lack of blood (Hgb was 7.0; platelets 17 after a transfusion) and drained physically from the constant stooling. He built a leggo Star Wars ship and talked and watched some tv. He has yet to complain about any of this.

Tomorrow I will be pushing for a new gameplan. To me, Tyler has not responded to the current protocol and is in fact worsening. We need to get a handle on this before it spirals out of control. I guess it's time for my weekly push the doctors to make a decision meeting.

Good news for the day is that Tyler's water weight decreased slightly again today. His billirubin was in the normal range today, no fevers and of course his mood and stamia to withstand this.

A side note to all you CHOP moms...we started our THIRD long white counts sheet yesterday :(
If I am here for a fourth, just come shoot me and put me out of my misery. Just kidding (I think).

I guess that's it for today. As usual, thanks to everyone for remembering us and for all the kind words in the guestbook. Have a good Monday!

Saturday, March 8, 2003 9:16 PM CST

Day +39 is Sunday

I wish I could report that things were better but sadly I can't. Tyler is still putting out over a liter of stool a day. In fact, he is losing so much blood that he had to get platelets TWICE today and they just drew labs to see if he will need them for a third time.

His weight decreased ever so slightly today and his billirubin was still elevated but stable. Still no fevers, thank God for some relief.

We discussed with the doctor today our frustration that over a week into treatment and things seem to be getting worse instead of better. They are of course reluctant to make any changes during the weekend but, he promised the team will discuss their options Monday morning.

Tyler's counts were as follows: ANC 10,692; WBC 10.9 (thanks Barb for the encouraging words and taking the time to look up Joey's prior labs) Hgb 8.6 and platelets 29 (this was even after a transfusion).

Ugh! Hope for a better day tomorrow. I'm beginning to sound like a broken record.

Friday, March 7, 2003 2:26 PM CST

Day +37 is Friday (44 days in the hospital)

Sorry for no update last night, the caring bridge sites were down.

Thursday was another rough day and so far, today is also. The frequency and volume are up drastically again. We had a good day last Saturday, then a couple of rough ones, then a couple of better days, then a couple of rough ones, so hopefully Tyler is due again for a couple of decent days over the weekend.

The good news is that Tyler is still fever free. He is also drinking (water) so well that they actually had to put a limit on how much he can take in over an eight hour period. Still sleeping most of the days (in between episodes) but, he feels ok when he is awake. In fact, we even took another walk in the transplant hallway last night.

The billirubin is still elevated, his weight is still creeping up slowly with water weight gain and he has intermittent episodes of tacycardia.

While I could laugh off the steroid inflated counts the other day, I don't think they're funny anymore. The docs said not to worry but, any cancer mom gets very apprehensive about a WBC on the rise.

ANC 12,600; WBC 14.0; Hgb 9.8 and platelets 41.

Thanks as usual for the thoughts and prayers and kind words in the guestbook. Have a great weekend!

Wednesday, March 5, 2003 10:43 PM CST

Day +36 is Thursday (43 days in the hospital)

Wow, two decent days in a row. Tyler was able to sleep uninterrupted again last night and he had only two episodes of diarrhea today!! The volume was more than yesterday at a little over a half liter, which is still too high but all in all, not bad. Dare I say we could be moving in the right direction?

Good news for today is that still no fevers, heart rate was fine, cramping was a little better and the above mentioned improvement in stooling.

Tyler's water weight was up some. He is holding on to about 5lbs extra weight in water. He was much more swollen today. However, he is still "dry" in the vessels. I wish that would improve. His billirubin (liver) was up today to slightly above normal levels.

Tyler is still sleeping about 80% of the day but he actually felt well enough for an hour or so, to build some more of his ship with his Dad.

Tyler's counts are artificially elevated due to the steroids:
ANC is 8008 (ha); WBC is 9.1; Hgb was 11.6 (he got blood yesterday) and his platelets are 27 (he'll get these again tomorrow).

Well, that's all for tonight. Have a good Thursday!

Tuesday, March 4, 2003 10:08 PM CST

Day +35 is Wednesday; 42 days for being in the hospital

As someone (I think it was Barb) wrote in the guestbook, an ok day in transplant is a good day...we had a good day today.

Tyler was able to sleep through the night last night without getting up once for cramping or stooling. This was the first night in a long, long time. His day was also good, he had three episodes all day and the volume was less than half of yesterday. Yahoo!! I know not to get our hopes up as we are definitely not there yet but, hopefully, the days like this will get closer and closer.

Other good news is that still no more fevers, billirubin (liver) is normal again, weight is stable, sodium levels are normal, blood pressures are normal and the tacycardia (fast heartbeat) has normalized.

Tyler slept 80% of the day but, that's fine by me as long as he is comfortable. I woke him up at 2pm for Bingo (CHOP has bingo every Tuesday) and he played for a half hour. He actually won twice! Our pastor came to visit today and played bingo with Tyler. Tyler felt very good while he was here. By 3pm he was back asleep and slept until 9pm when I woke him for his shower and to change his bed.

They are still adjusting the Cellcept, Cyclosporin and Methylprednisone levels. These are all IV drugs that Tyler is on to get the GVHD under control.

Tyler is dozing off again as I write this. With any luck, he'll get another good night's sleep.

We are officially the last of the January transplants left on the floor. The one other one that was still here left today.

Tyler's body is still eating up blood and platelets. He received platelets yesterday and packed red blood cells today.

Many thanks for the thoughts and prayers in the guestbook. Have a good Wednesday.

Monday, March 3, 2003 11:48 PM CST

Day +34 is Tuesday

Good news for the day is that Tyler's weight is stable, no fevers today, his GVHD of the skin looks great and his billirubin (liver) was totally normal today.

The cramping and diarrhea have increased today in both frequency and slightly in volume. Another concerning item is that Tyler has developed tacycardia due to his not maintaining fluid in his vessels (which is due to his losing protein in the diarrhea). As I mentioned before, though he is holding on to too much fluid in his skin, he is not keeping the fluid where he needs it.

His little heart feels like it will beat out of his chest at times. The docs are monitoring it closely but the main thing that will help, is for his diarrhea to get under control. Unfortunately, they are still saying it could be weeks before we see improvement in the GVHD of the gut.

Tyler was extremely quiet today, I don't know if he said four words. I kept asking him if he felt alright or if I could do anything and he said he felt ok but, he just didn't seem well.

It's been a long day so I am going to try to get some rest. Have a good Tuesday!

Sunday, March 2, 2003 8:59 PM CST

Day +33 is Monday (40 days for being in the hospital)

Today was not as good as yesterday but, not as bad as Friday. I'm sure we've got lots of up and down days ahead, just hope there are more ups.

Tyler's fever is back. Twice today he was about 101.5. They started him back up on the antibiotics and drew more cultures. So far the ones drawn on Thursday night are still negative.

He was not up very much today and when he was, he was not as lucid as he was yesterday. He also had some pain and cramping today. Tyler is on a constant dose of morphine and can push a button to give himself added boosts (a PCA machine). Despite this, he still had pain so we've increased the dosage on the boosts he gives himself. He is so cute, when we added the PCA pump he said "I like my button, now I don't have to wait for the nurses to go get my medicine and come give it to me". For some reason, he insists on asking permission before he pushes it though. He says "Mom, may I push my button?". We've told him, baby, you push that button whenever you need to.

His frequency and volume are up again for stooling. He's up to a liter again. The liver functions are stable again today (good!) and his weight decreased slightly (another good, less fluid retention).

I've added a couple of links to sites below. One is for Tyler's virtual quilt made by the nice people at Smile Quilts. They are a great bunch of folks who make virtual quilts for ill children based on things that the children are interested in and enjoy. Tyler's is really neat and he likes it a lot.

The other link is for Hugs for Hope. This is a wonderful group that remembers ill children by sending them "happy mail", amoung other things. Tyler is one of the featured children for March.

Well, that's it for tonight. Have a good Monday.

Saturday, March 1, 2003 7:31 PM CST

Day +32 is Sunday

Well, I don't know who has the in right now or maybe it is just a combination of everyone's prayers but, today was a much better day. I finally have some good news to write about. In the last 24 hours Tyler has had a total of two bowel movements and is only at half of the volume output he had yesterday. I can't tell you what good news this is. Now, we know from experience that things can change around here from hour to hour but, we'll definitely take the positive outlook.

He has even felt a little better. Granted for short periods of time, but he has been comfortable and resting peacefully. He has even managed to have some conversations with us and his nurses. The nurses are so wonderful here at CHOP. We love each of them. I couldn't even begin to name our favorites because they all are so great to us.

The best news of the day came about 2:00am this morning. Tyler woke up and seemed to feel fairly well. He asked me if I wanted to help him build his new mega block battleship! Barb and Joey you get WAY extra brownie points now. We stayed up and built the ship until 4am. Tyler drank about 6oz of water and was lucid and talking and pain free.

He had a couple of periods like this throughout the day and continued building the ship with Dad and drinking. He still remains fever free and in fact they d/c'd a few of his antibiotics.

His weight rose again and he is still holding on to too much fluid but that is expected right now. They are getting his sodium level slowly under control which hopefully will be helped by less stooling.

His liver functions remain slightly elevated but stable. His ANC (2538) and WBC (2.7) have dropped but hopefully this is just due to a combination of the Cellcept (one of his GVHD drugs) and the fact that his immune system is healing the ulcerations in his digestive tract.

Once again, thanks for all the guestbook entries, thoughts and prayers. We probably look forward to them as much as you do for updates. Speaking for myself, they've made me laugh and cry and been a source of inspiration.

Speaking of inspiration, Tyler certainly has been mine. He has never once complained during this whole process. Each night he wishes me sweet dreams and tells me he is sorry I have to sleep on the cot/chair and thanks me for taking care of him. With all he is going through, how he can even think of someone else is beyond me. He never thinks of himself. We've told him over and over that we wouldn't rather be anywhere else than here taking care of him.

Friday, February 28, 2003 6:29 PM CST

Day +31 is Saturday

First we want to say thank you to everyone for signing the guestbook and keeping Tyler in your prayers. I know that many people have called or e-mailed and please know that we appreciate it. Honestly neither Michael or I have the strength to talk on the phone let alone keep repeating the same news so please understand that it is taking all of our strength right now just to be here with Tyler.

Hopefully you'll understand that the website will need to be the main source of communication. I am so sorry, but we hover on the brink of tears and this is just the easiest way to let everyone know what is going on. I promise to keep the journal updated every day.

As I tried to convey yesterday, Tyler is seriously ill. I guess the best way to try to explain it for those that have not been through this is to compare it with an organ transplant. Many of you may be familiar when during a heart transplant, the body rejects the new organ. In Tyler's case it is different in that it is his new stem cells that are fighting his body, their new home.

He has GVHD (graft versus host disease) of the skin, digestive system and possibly the liver. The GVHD of his skin is present and considered grade 3 but has responded to treatment and is doing fairly well. The digestive system is grade 3 and still worsening. His stool output has increased daily and is well over a liter a day. In addition to causing him pain and to feel poorly, the bowel movements are causing him to lose other things his body needs such as sodium and protein. These sound minor but low levels of these can cause significant problems such as seizures and leaky capillaries.

His weight is slowly creeping up again and because his capillaries are leaking, he is holding excess fluid in his skin. Therefore, he is again looking very bloated. Although he has to much fluid there, he is not maintaining the fluid where he needs it and this is causing problems also. It is not an easy fix since just giving him more fluids does not put the fluids where they need to go.

He is requiring platelet and blood transfusions because he is losing blood due to the multiple ulcerations throughout his bowels.

There is no clear cut "cure" for GVHD so yes, finally getting a diagnosis from the biopsy was good and at least we can begin treatment. However, the treatments do not work in all cases. That said, they do work in a lot of cases. I don't want to give the impression we've given up, I just want everyone to realize the seriousness of this. Also, it takes weeks and much tweaking/switching of the medicines to get the GVHD under control. If the GVHD responds to the treatment, you just have to hope the other complications that you deal with within those weeks can be managed. For example, other infections, the sodium/protein issues, the fluid issues,etc.

The good news for the day is Tyler has not run another fever since the one last night (yet). I'm praying hard that the fevers stay away and give us some breathing room to deal with the GVHD.

On a personal note to Barb and Joey...Ginny stopped by our room about 8pm last night with a package from you guys. I'll quote Tyler, "that was so nice of them, they didn't have to do that, Joey is not feeling great either." Isn't he a pip? He loved the battleship. He only felt well enough to put together a few blocks and fell asleep with the leggos in his hand.

Well, that's all for now. Keep the prayers up as we can use them.

Thursday, February 27, 2003 5:36 PM CST

Day +30 is Friday

The results of the biopsy are not good. Tyler does have GVHD of the digestive system and it is not a mild case. There are grades 1 to 4 and Tyler is presently grade 3. In addition, there is concern that his liver is also affected due to the higher than normal billirubin but, it is too early to know for sure.

While we have already spent 37 days in the hospital, we will have weeks more to go. The doctors are "hopeful" Tyler will respond to the treatment but this is very serious. It is much harder to control GVHD when it affects the gut and liver and there is the chance Tyler will not respond to treatment.

I don't know what to say. Michael and I have seen our share of children in this condition never get home while we spent our time on 3 east getting chemo. We are very upset and fearful.

They have increased Tyler's steroids and added a third drug to the steroid/Cyclosporin mix. The risk for infection will increase of course, due to the immune system being suppressed and to make matters worse, Tyler has begun to run a fever. They have started him on three antibiotics in addition to the other drugs.

I'll try to write more tomorrow.

Wednesday, February 26, 2003 6:39 PM CST

Day +28 is Wednesday

Not much to report on as most of the day was spent either in the OR for the biopsy or back in the room sleeping. They took Tyler at 11:30 and we were in pre-op for an hour before they finally wheeled Tyler into the operating room. I was with him while they gave him the anesthesia and fell asleep. The procedure took about a half hour and we were back in Tyler's room about 2:30.

He slept until close to 5:00. Even since then he has been mostly resting and dozing off and on as certainly would be expected. He felt fine afterward and has not complained of any additional cramping related to the procedure.

The GI doctor who did the procedure and the onco docs who have reviewed the pictures said the same thing, he is torn up inside with ulcers. When I asked, they said they would classify it as a moderate amount of ulceration. They have seen worst cases and they have seen much more mild. Regardless, they won't have the final results of the biopsy until tomorrow.

Tyler counts remain decent- ANC is 4508; WBC is 4.9; Hgb is 8.8 and platelets were 61. I had them give him platelets yesterday in preparation for the procedure. Since he is losing blood in his stool and obviously has many ulcers he is not holding on to the platelets yet.

So far still fever free and the nausea is very tolerable on the Zofran. His blood pressures have gone a little higher so they are increasing his BP med. His heartrate has been a little high throughout the day today so they are watching the tachycardia. His one liver function test was slightly elevated again with his billirubin at 2.7.

Well, I'll update tomorrow once we find out the results and know what the gameplan is. Once again, thanks for all the thoughts and prayers

Tuesday, February 25, 2003 11:28 PM CST

Day +28 is Wednesday

Today was an ok day. I've begun trending Tyler's stool volume myself so that I can see if he is improving any. He had more volume and frequency today but surprisingly he felt better today than he did yesterday. And he had felt better yesterday, than Sunday. So even though his gut doesn't seem to be improving, for whatever reason he is. By no means is he back to himself, the improvement is only slight each day but at least it is going in the right direction.

Tyler's teacher came today as she has done for the past few days and today he finally started to participate again. The past few days, she was only able to read to him as that was all he was up to. She really is wonderful and they have a great relationship.

I also forced Tyler to go for a short walk in the transplant hallway. He was not pleased with me but I could tell he was physically able to today and I wanted to take advantage of it. Don't know if any of you guys remember the old Carol Burnett show but, he walked like Tim Conway when he played the old man. Literally all Tyler did was walk a couple of rooms to the left and a couple to the right and then he was back in bed where he fell asleep for three hours. I think I was officially "mean mommy" at that point.

Speaking of mean mommy, the residents switched so I have fresh meat to play with. I so enjoy chewing them up and spitting them out. They don't realize they are my only source of entertainment at this point.

The biopsy will be tomorrow as scheduled so hopefully we'll have some answers by late in the day. In talking with Tyler's primary doctor, who I respect a great deal, if it is GVHD of the gut, it does take time to heal. Apparently, the gut does not respond as quickly or as easily to treatment as the skin does (or at least did in Tyler's case).

One of Tyler's liver function tests came back slightly elevated today and had been a few days ago too. While this could be caused by the liquid nutrition (as that puts a strain on the liver) it can also be a sign of GVHD of the liver. I pray this is not the case.

Keep Tyler in your prayers for the biopsy tomorrow.

Monday, February 24, 2003 5:44 PM CST

Day +27 is Tuesday

The biopsy is scheduled for Wednesday! Yeah! I feel better already just knowing that hopefully we'll get some answers soon. Since I want Tyler to be asleep and get general anesthesia for the procedure, they had to schedule an OR room, which is why we have to wait till Wednesday. I won't bore you with the long drawn out discussions, suffice to say I was not about to take no for an answer.

This does mean we will probably remain in the hospital another two weeks at least. Figure if we get an answer on Wednesday, treatment can't begin until Thursday. Tyler then has to respond to the treatment and get better. Then he needs to drink enough fluids on his own to hydrate himself. Since he has felt so poorly, he has not been drinking enough fluids on his own.

Depending on what the treatment is, may add some time to this also. One drug causes the immune system to be depressed which again means low counts/neutropenia. Of course if this happens, Tyler is again at great risk for a life threatening infection and we will need to remain hospitalized until his counts return.

We've been in the hospital for five weeks already, I wonder what the transplant stay record is?

On a lighter note, Tyler actually seemed to feel a bit better today. He had a little less pain and was able to hold a conversation at a couple of different times today. I explained the test to him and while he is a little scared, he seems ok with everything.

Sunday, February 23, 2003 10:14 PM CST

Day +26 is Monday

Not much to report on, Tyler has pretty much felt the same. Still having periods of diarrhea (which is testing positive for blood) and a lot of stomach pain.

The past few nights have been long as Tyler has not been able to sleep due to nausea. I had them put Tyler back on Zofran an anti-nausea medicine normally used during Chemo and this seems to have helped. He is on morphine for the stomach pain but it only provides temporary relief.

No fevers in about a week and Tyler's counts look good. His ANC is 3520; WBC is 4.0; Hgb is 9.6 (he hasn't needed a blood transfusion in two weeks) and platelets 51 (he got these yesterday, I think he is using these up due to the blood in his stool). His blood pressures have been under control with the medicine and his weight is back to normal.

Well, the doctors had their weekend, now come tomorrow, I want some answers. I will be pushing for the biopsy first thing in the morning and after this weekend I am in no mood for an argument. I certainly don't want to put Tyler through any more tests but, they tell me the only way to know for certain whether Tyler has GVHD (graft versus host disease) of the gut is by a biopsy. I know he has it, it's just my gut feeling. I hope I'm wrong but if I'm not, we are just delaying the treatment Tyler needs to get better and feel well.

Thanks for all your prayers and kind words. They mean a lot to us. It is nice to know there are so many people pulling for Tyler to feel better.

Friday, February 21, 2003 7:14 PM CST

Day +23 is Friday

After I wrote yesterday's entry in the morning, things went progressively downhill. We're trying to remain positive and upbeat but it is getting harder and harder to do, so sorry if this update is not too chipper. I don't feel very chipper right now.

Tyler's counts are fine and he still has no fevers which is good. But the diarrhea and cramping are worse again. Every time they seem to go away and we get hopeful, they come back.

There is still no definite diagnosis for this. The best case scenerio would be if this is just leftover mucusitis his body is trying to expel. Worse case is that it is GVHD of the stomach. It is looking more like it might be GVHD of the stomach. The doctors want to see what happens this weekend and perhaps biopsy Tyler on Monday.

Tyler has felt so poorly for so long now I just wish he would feel better.

Thursday, February 20, 2003 10:57 AM CST

Day +22 is Thursday

Tyler's counts are: ANC 3256 (steadily rising again); Hgb 9.3 (hanging stable); WBC 3.7 (also rising) and platelets 40 (they were 34 on Tuesday and 45 on Wednesday so I thought he might have started making them on his own but with the slight drop today, I'm not sure).

Tyler's latest stool sample came back negative for the rotovirus so it looks as though he has cleared that from his system, which is good. I had thought the stomach cramps would go along with it but, he still has pain and diarrhea. It looks as though his body is still clearing the transplant mucus from his digestive system.

Still no fevers since late Monday night, another good sign. Ginny called in Tyler's prescriptions to our home pharmacy so I can pick those up on the weekend and she can check them out on Monday to be sure we got all the right things. He'll be coming home on six medicines.

Tyler was up alot last night with cramping. This morning he woke up feeling much the same way. He got some benedryl and fell asleep at 10 and is still napping so I'm hoping when he wakes up he is feeling better. He drank 14 oz. yesterday, up from 8 oz the day before. I'm trying to get him to increase his fluids by a few ounces each day. He has to be able to hydrate himself in order to come home.

All in all, things are going pretty well.

Tuesday, February 18, 2003 11:00 PM CST

Day +21 is Wednesday

Tuesday started off with Tyler getting up about 6:30am as is fairly normal for him now. Since he is sound asleep no later than 9pm he is still getting close to 10 hours of sleep. He feels really well in the mornings. This is usually when he drinks, takes his medicines, plays some games and watches cartoons. By 11 he is ready for a nap.

The past two days he has slept alot during the afternoon as he is having severe stomach cramping from the virus. Today was the worst day yet for the stomach pain. On the positive side, he has not had a fever since the middle of the night, Monday.

He rarely has any nausea and the diarrhea is very manageable. He has begun taking two of his medicines by mouth as opposed to IV in preparation of eventually going home. I believe they will be converting a couple more over the next few days. It looks as though he will be coming home on a minimum of six daily meds (some of which are taken twice a day).

I doubt we'll be home this week but, maybe next week. If the fevers stay away, Tyler increases his fluid intake and the pain goes away, we can go home. It's hard to believe we have been in the hospital four weeks already.

Tyler's counts are: ANC 2184; WBC 2.4; Hgb 9.3 (it's been about 10 days since Tyler has needed packed red blood cells) and platelets were 34 (it has been 5 days since he got a platelet transfusion). It doesn't appear that Tyler's marrow has begun making platelets on his own yet but, he is holding on to them for a while which is a good sign.

Bingo was today and of course Tyler won. At least I only had to make one trip up to the 5th floor.

Monday, February 17, 2003 6:17 AM CST

Day +19 is Monday

Yesterday was another good day. They decided to do additional CAT scans on Tyler since the low grade fevers are still present. All of these came back normal so they are pretty confident it is the rotovirus that is the problem.

Tyler continues to feel better. He fell asleep last night about 8pm and slept soundly. He woke up this morning about 6:30.

His counts dropped slightly since they are busy fighting the infection. His ANC was 4350; WBC was 5.0; Hgb increased to 10.1 and platelets dropped to 45.

Basically all we're waiting on is the rotovirus and fevers to get better and we should be able to go home. The doctors said it could be up to a week for the virus but we'll see.

We have a great view of the snow! We're watching the wind blow so strong that the light pole is bending so bundle up.

Saturday, February 15, 2003 10:44 PM CST

Day +18 is Sunday

Tyler had a pretty good day today. He felt well enough to play me in a game of Uno. His weight is down to 26.1 (about 57 1/2 lbs) and he looks a great deal less bloated and puffy.

His labs were: ANC 5753; WBC 6.3; Hgb 9.3 and platelets 64. He hasn't begun to hold on to and make platelets on his own yet. Hopefully, he will soon.

He is really doing great except for still running the low grade fevers. They told me that his stool has tested positive for "roto virus". I had never heard of this. They said it is quite common in small children. Anyway, it is fairly harmless and the symptoms are fevers, diarrhea and nausea. Well, bingo, we have all of those. They said they don't even treat it with antibiotics, they just let it run it's course and it usually clears up within a few days.

Tyler slept and good deal today but when he was up he had some energy and seemed less shaky. Hopefully we have turned the corner and can get out of here in a few days. I say that with crossed fingers and toes since you never know what the next day can bring.

Friday, February 14, 2003 8:33 AM CST

Day +16 is Friday Happy Valentine's Day

Sorry for the late update but Tyler has needed alot of TLC over the past two days. I actually had a complete update done yesterday when the pc kicked me off. That did me in for the day since I didn't find any other time.

Tyler feels better today than he has in a long time. We had been spoiled by the way Tyler handled all his other rounds of treatment. He always looked and ran around as if he were not even sick. This time was very different for us and we have to get used to the idea that Tyler's body has been through a tremendous trauma. It will take him a long time before he fully regains all his energy and stamina. We just were not used to seeing our boy so sick he couldn't talk and just getting from the bed to the commode (1/2 foot away) would make his entire body shake and he would have to nap to recover.

For every minor setback we have had over the past two days we have taken two steps forward so that is good news. Believe it or not, they are talking about our possibly going home next week. Tyler has a long recovery ahead and we would be back to clinic at least twice a week, but he would be home. He is still a very weak little boy but he is getting better and stronger each day. This morning he was talking to me and telling me he loved me, something he has not been able to do for a few days. He even played a video game.

His counts today are: ANC 5628; WBC 6.7; Hgb 8.7; platelets 107 (he got these yesterday). His GVHD rash is almost completely gone. He has no itching related to this and he is drinking very well.

The flip side is that he started running low grade temps (38.2 or 100 to 101 degrees) Wednesday night. He is on antibiotics but, they think that the fevers are due to his body healing. He also has started with diarrhea again (this could be from the antibiotics or as a result of his body healing the digestive track or a combination of both). He has had some nausea and vomiting over the past two days (again most likely a result of the body healing).

He is still holding on to extra water weight but it has remained stable and not continued to increase. His face is less puffy and his eyes are much clearer. Tyler's blood pressures have been mildly high due to the steroids so he has been placed on a hypertension med for now.

The thought of going home is both exciting and scary. Let's see what the weekend brings. Hopefully Tyler will continue to feel better and stronger.

Tueday, February 11, 2003 10:00 PM CST

Day +14 is Wednesday

Before I go to a regular journal update, I want to make you aware of something I just learned of tonight. On February 14th, Saturn dealers are sponsoring a donor drive for the national bone marrow registry. I sincerely urge all of you to go to your nearest Saturn dealership and donate blood and be put on the registry. Normally, without a drive, this can be costly or a hassle to get done/find a location. Well that excuse has been taken care of. I can't think of a more meaningful thing to do for Valentine's day than giving the gift of life to someone. I've added a link to Saturn's site below if you would like to read more about it. I know everyone is busy and it's cold out and you could probably think of a million other excuses not to do this but please, get off your butts and get on the registry. Tyler was lucky and had multiple matches but many families are not that lucky. Also, not trying to use scare tactics but, don't ever be so sure that this will never happen to your child or grandchild or other loved one. I certainly never thought it would happen to us. It won't take long, it's painless and cost free. People ask me all the time what can they do to help, well now I'm telling you. Go on Friday and get on the registry. You never know whose life you might save.

Tyler's ANC was 2465 with 100 cells counted. His WBC was 2.9; Hgb was 9.2 and platelets were 42. He has remained fever free since 8pm Sunday night and all blood cultures have been negative.

Tyler's weight went up again and it is all water. He was 24.4 when we came in to the hospital (just under 54lbs) and today he was 28.1 (just under 62 lbs). They gave him lasix to help him pee out the added water, cut his IV fluids/nutrition and changed his IV pump to a new one that delivers the meds with less fluid. He still looks extremely bloated to me so I will be curious to see his weight in the morning.

His blood pressures were a little high tonight so they gave him some HBP meds and it came down to normal. The allergic rash is all gone and we are left with the GVHD (graft versus host disease) rash. This rash looks slightly better. They told us that optimum would be for us to see this recovered within one week of starting treatment which would be by next Monday. It is very important that it responds to the steroids or we will have serious problems.

I hope it responds quickly and he can get off the steroids. I worry about the bloating, HBP and not peeing.

Tyler was not his usual alert and chipper self today and of course who could blame him. He slept most of the day and evening which is actually good and fine by us. There's nothing wrong with sleeping through this uncomfortable phase. His itching is a little better. He is sad by the way he looks. He said "I look like a freak". I wish they didn't have this hugh mirror in the bathroom. It's so hard for a seven year old to understand.

Good news today is that blankie and piggy got sprung from their plastic prisons. Tyler was very happy to snuggle with both of them. He also is allowed regular water and ice (not the sterile water he had been forced to use). He really likes to drink water so this was a big thing for him.

They have begun cutting back on some of Tyler's meds in preparation for him to go home eventually. I wouldn't foresee this happening until next week and that is only if the GVHD is under control and he is peeing on his own and not retaining as much fluid. But it is a nice thing to look forward too.

There will be a long recovery period and twice weekly trips to clinic but, it would be nice to be home.

Monday, February 10, 2003 11:01 PM CST

Day +13 is Tuesday

I'll start off with Tyler's counts: ANC is 1305 (big yahoo!); WBC is 1.5; Hgb is 9.1 (he got blood yesterday) and platelets were 29 (he got platelets today). Plus they counted 25 cells.

Sunday night was probably the worse night Tyler has ever had
with regards to his being uncomfortable. He itched terribly. I can't even put into words the terrible way he must have felt. Nothing would take the itch away and all he wanted to do was go to sleep. Finally out of frustration he just laid in my arms and cried. He finally fell asleep about 10am Monday morning for about a half hour, then off and on throughout the day for cat naps. The itching seems to have subsided considerably.

A lot is going on physically. It seems as though he does have Graft Versus Host Disease (GVHD) and that rash overlapped the allergic rash making it difficult to determine which is which or what is left. The rash he has today is slightly different than prior. For one thing it covers his entire body head to toe. This one fades a little at times and also the itch is better although, that could be from all the steroids. They treat GVHD with steroids so that is what he is getting.

We noticed when he was on steroids before, that for some reason he hardly pees. This is happening again and he is also retaining water. His weight has increased about 10% and it is all fluid. The steroids usually cause high blood pressure in Tyler but, so far this has been ok. His whole body (especially his face) is very swollen.

He had a CAT scan today and all was normal so no fungus! He has been fever free since 8pm last night. All his blood cultures except for one have been negative so they are starting to think the one might have been a false reading due to a contaminate. He remains on his antibiotics for now just in case.

So our big thing now is dealing with the GVHD. With luck this will clear with the steroids. The fear is that it can be hard to get under control and can spread from affecting just the skin to affecting his digestive tract and then liver. It can be extremely uncomfortable and also deadly.

The good news is they like to see some GVHD. There is a higher increase of relapse for people who have not had GVHD. Seems the GVHD is also known to provide a "graft versus leukemia" effect. This is where the donor cells attack and kill the cancer cells should they return, unlike Tyler's own cells were doing. Unfortunately it is just so hard to control/manage GVHD and the donor cells can continue to attack Tyler's body since they recognize it as foreign to them.

At least Tyler felt more comfortable today and that is our biggest concern at the moment. Thanks to everyone for all the prayers that are being said on Tyler's behalf. We can never have enough prayers.

Monday, February 10, 2003 0:17 AM CST

Day +12 is Monday

Well Sunday was quite the eventful day. Tyler woke up with a fever of 106. He really felt rotten this morning mostly from the rash and of course the fever.

Surprisingly the docs were in agreement with me about stopping the drug and switching Tyler over to the original antifungal medication. While they didn't necessarily believe the rash was an allergic reaction, they felt his other symptoms were severe enough to warrant the switch. I did ask them if they thought there was a chance he has just developed an allergy to the antifungal drugs in general but they felt that since his history with the Ambasome was fine in November we should try this drug today since they are still being very conservative about treating a potential fungus.

Tyler was given the drug at 4pm while he was sleeping and it runs in over an hour. At the end of the hour he coughed and stirred and mumbled his tongue felt weird. I ran over and sat him up and within seconds his tongue swelled out of his mouth and he went into anaphalytic shock. I had said to Michael this morning that that was what I was afraid was going to happen. Those not familiar with what this is may have heard of people being allergic to bee stings and having this happen.

His nurse ran to get the doctor and they gave him IV steriods and a shot of epinepherine. His tongue stayed swollen for close to two hours but finally went back to normal. He is such a trouper, we explained to him what was happening so he wouldn't be scared and that he would feel better soon. He stayed calm and quiet the whole time and watched tv.

The doctors have now stopped all antifungal meds (no brainer there) and have said that they now agree this is an allergic rash. The problem is it will take time for the rash and swelling to disappear. Tyler's eyes are swollen partly shut and his cheeks look like Marlon Brando in the Godfather. The itching is driving him insane and nothing seems to provide any relief. He is on multiple steriods to help with the reaction but I'm afraid only time will get this out of his system.

The good news is Tyler had an ANC of 260 today. Yeah, this means it looks like he is engrafting! Also, Tyler has not had a fever since 8pm. He has really never been sick throwing up at all and the diarrhea is down to once a day. Luckily, he never really developed the mouth sores to the extreme we have heard many children get. He basically has two and now that he has an ANC, these should clear up pretty quickly. He ate a small amount of jello today and drank about 5oz of soda.

If his ANC is up again tomorrow, they will schedule him for a CAT scan to rule out a fungus. If that is clear, we won't have any further issues to worry about in that regard.

It's such a shame about the drug reaction because he would have made it through fairly easily if not for that setback. If the fevers stay under control then hopefully the only other event could be graft versus host disease. Now that he is grafting, this could happen and can be very serious also.

Saturday, February 8, 2003 10:32 PM CST

Day +11 begins Sunday

Sorry not to have updated since 5am on Friday but to put it bluntly, Friday and Saturday sucked. We haven't had days like these two since Tyler was first diagnosed during round one and made a trip to the intensive care unit.

Let's start with Friday, the high fevers continued non stop and Tyler continued to feel lousy. Because of the fevers they decided to put Tyler on an anti-fungal medication. Fungus infections are not unheard of for immune suppressed cancer patients and often are deadly. Tyler had been on one during round one in 2001 and had severe allergic reactions to it. Tyler is allergic to many meds. This one caused dangerously high blood pressures, a rapid heart rate, extremely high fevers and violent tremors in Tyler. The high fevers sent Tyler into seizures and we almost lost him. This past November, Tyler was again placed on an anti-fungal, but a sister drug to the one that caused such severe reactions and he did fine. So, I was not concerned when I was told this is the drug he would receive.

Well, he experienced the same reactions as he did in 2001 but luckily we were able to get them under control. The nurses told me that the hospital has changed pharmacutical companies and while the drug Tyler received is the same makeup it is by a different company and as such, technically not the same drug.

Then came Friday evening, despite giving Tyler tylenol every three hours his fevers never fell below 103 and many times were above 104. He developed a rash that covers his face, arms and butt and is scattered over the rest of his body. He felt terrible and moaned in his sleep (calling it sleep is really pushing the term) while his eyes rolled in their sockets to show the whites.

Saturday started off just as bad. Dad and I were very upset. Saturday afternoon was another dose of the antifungal. This time we tried pre-meding with Benedryl, Hydrocortisone and giving four doses of demerol thorughout the transfusion. Tyler still experienced a reaction and although it was less severe than yesterday, I don't like it.

Saturday evening was somewhat better. Tyler felt better, he was talking and the fevers while not breaking, did at least get down to 102 at times. I should say at this point that a blood culture that was drawn at 5am on the 7th grew back positive for a gramm positive bacteria. They began treating Tyler for this also.

The rash is driving Tyler crazy though now that he is feeling alittle better. The itch is unbearable for him at times and even in his sleep he is scratching his eyes and nose. As I write this it is sinking in that he developed the rash the night he received his first dose of the new antifungal. Now after the second dose his face is swelling and the itch is worse so, I've decided to tell the docs tomorrow that I do not give permission for him to receive this drug anymore. They can either figure out a way to get the other drug for him or not but, I want him off the antifungal. That should be an interesting conversation.

We did get one piece of good news today but, keep in mind it's a weekend and unreliable stuff has come out of the CHOP labs on weekends...they counted three cells today!

Friday, February 7, 2003 4:02 AM CST

Day +9 Friday

Tyler ended up having a pretty good day yesterday. His temperatures were normal most of the day. He stayed up from about 6:30am to around 11:00 ( and felt fairly well) then took an hour and half nap. Actually, we both took a nap. He felt well when he woke up and played all afternoon.

The diarrhea was manageable and the nausea almost non existent. He got his shower around 4:30pm and started running a low grade temp around the same time. He fell asleep for the night about 9:30.

At 3:30am he woke up crying in severe pain in his throat. He has developed a slightly runny nose and I think the post nasal dripping has made the "thorn" as he calls it, in his throat worse. We gave him some morphine and it took the pain away quickly. I rubbed his back and he fell back to sleep.

His temp at that time was about 103 so the fever is back and the highest it has been yet. He also took some tylenol and it seems to be breaking. Needless to say, I was up for the day at that point.

I know I've missed some phone calls so sorry to those of you that have tried. In fact, I haven't turned on my cell phone for two weeks so I'm not even sure if there are missed messages there. I'll try to catch up next week.

Tyler's platelets were 56 so no platelets today; Hgb was 8.6 so no blood; WBC was .2 and no ANC. The blood cultures so far have still remained negative.

Tyler is one tough cookie. I can count on one hand the number of times he has asked for something for pain. The docs said that by now almost all the kids are on a PCA machine that delivers a constant dose of morphine. I am very proud of him for the way he is handling everything he has been through.

Have fun to all of you that will be shoveling the snow that has fallen over the night. Our window faces the front of the building and we can see the snow coming down.

Thursday, February 6, 2003 4:33 AM CST

Day +8 Thursday

MINI UPDATE : as of 2pm the cultures are still negative. Tyler feels well
now but it's the afternoon! He did run another fever that got as high as 38.8 but it has since broke. So the fevers are one of three things, engraftment, a fungus or an infection that is not as serious since it did not grow out in 24 hours.

PS... thanks Barb for the entry. I'll try the chair suggestion and you gave me some hope that maybe this is engraftment after all.


Tyler had a pretty good day yesterday. The morning brought some yucky feelings as is the norm and his afternoon was good. He continued to run the low grade fevers so they started him on antibiotics and drew blood cultures. The first set of 24 hour blood cultures are due back at 10am.

Tyler fell asleep about 6pm last night as his fever started to climb again and he generally wasn't feeling well. The diarrhea and nausea were much better yesterday though.

He woke up off and on throughout the night and about 4:30am ran his highest fever yet of 38.6 which is about 102. We gave him some more tylenol and he is back to sleep. I don't believe this is an engraftment fever just because he is feeling so poorly. I hope that it is not a serious infection but we won't know until his cultures come back.

Tyler got platelets again yesterday. His platelets were 24; Hgb was 9.6; WBC was .1 and no ANC.

Two weeks today since we've been back in. They have gone by really fast. At least we've made it this far without anything serious and hopefully Tyler's cells will start to engraft so that if he does have an infection his body will have something to fight it off.

Going to go up and get wash I put in earlier, I'll update later this afternoon if I hear anything about the cultures. Say a prayer it is not anything serious.

Wednesday, February 5, 2003 0:16 AM CST

Day +7

Tyler had another pretty good day overall on Tuesday. He woke up early with some cramping and the now expected diarrhea. By lunchtime things were better and he had another very good afternoon.

So far his afternoons are the best times for him. He feels really well. Mornings are just ok and evenings bring lots of cramping. Tyler had morphine again in the evening to help him feel better and get to sleep. He fell asleep by 9pm. He wakes up a couple of times a night but usually falls right back to sleep.

Tyler counts were: platelets 44 (these usually come up higher than this the day after a transfusion); Hgb 10.6; WBC .1 and no ANC

It's hard to believe it is a week since his transplant already. The doctors said there is a chance we may see evidence of engraftment by the end of the week. They also said that a low grade fever can be a sign of engraftment.

Tyler has not eaten or drank any thing worth mentioning and he will need to pick up on this before he can go home but until his counts start to come back, I'm not pushing this.

Thanks for the messages in the guestbook, we enjoy reading them.

Tueday, February 4, 2003 11:42 AM CST

Day +6 Tuesday

I had updated last night about 1am but I see the site does not reflect the update so I'll try again.

Yesterday morning Tyler woke up early with stomach cramps. They got severe enough that I had them give him some morphine. He also needed platelets (they were 10) and benedryl so he fell asleep for a couple of hours. When he woke up about 12:30 he felt great. He played with the art therapist a bit and we played some games.

I gave him his shower about 4:30 and after that he started with the cramping again. He generally felt alittle yucky and flirted with a fever all evening. He ended up not getting one though.


Tyler's Hgb was 8.0 so he got packed red blood cells too. The doctors are pleased with his progress so far and while the cramping and diarrhea are uncomfortable and alot of work, we know it certainly could be worse.

So far Tyler has no nausea which is very good. He still has the "thorn" feeling in his throat but, it hasn't gotten too much worse.

Another day down.

Monday, February 3, 2003 0:26 AM CST

Day +5 begins Monday

Tyler had another pretty good day. No nausea really and no complaints about mouth or throat pain. The diarrhea was back with a vengence. Good thing we have a commode that sits right next to the bed since Tyler spent about 80% of the day on it. At least he could watch tv.

Even with all of that we really can't complain. He is not in any pain that requires morphine as alot of the kids need and his spirits are good. We still found time to play UNO and by 8pm things slowed down enough that Tyler could take his shower and watch a movie.

I'm glad he is on the IV nutrition since he is getting plenty of fluids this way and won't dehydrate. He manages to eat a yogurt or applesauce usually and the rest of his calories he gets from the nutrition so he hasn't lost any weight yet.

His ANC and WBC are basically 0, his Hgb was 9.0 today and he has not yet needed a blood transfusion. His platelets were 27 today and I expect he will need those tomorrow. If so, this will be his first platelet transfusion since being admitted this round.

Monday, February 3, 2003 0:26 AM CST

Day +5 begins Monday

Tyler had another pretty good day. No nausea really and no complaints about mouth or throat pain. The diarrhea was back with a vengence. Good thing we have a commode that sits right next to the bed since Tyler spent about 80% of the day on it. At least he could watch tv.

Even with all of that we really can't complain. He is not in any pain that requires morphine as alot of the kids need and his spirits are good. We still found time to play UNO and by 8pm things slowed down enough that Tyler could take his shower and watch a movie.

I'm glad he is on the IV nutrition since he is getting plenty of fluids this way and won't dehydrate. He manages to eat a yogurt or applesauce usually and the rest of his calories he gets from the nutrition so he hasn't lost any weight yet.

His ANC and WBC are basically 0, his Hgb was 9.0 today and he has not yet needed a blood transfusion. His platelets were 27 today and I expect he will need those tomorrow. If so, this will be his first platelet transfusion since being admitted this round.

Sunday, February 2, 2003 0:07 AM CST

Day +4 begins Sunday

Today was another good day. Tyler felt well all day and had no mouth pain or stomach problems. I went home for the day and when I came back around 5:30 he was smiling and talking and in a very good mood.

We received a tape in the mail today from the Ronald McDonald camp. It was all about the summer camp for kids with cancer that Tyler attended in August. He really enjoyed watching it and reliving all the fun he had. He liked seeing all the kids and showing me all the things he got to do. He had a great time at camp and I'm so glad he got to go.

Early evening brought some nausea and slight diarrhea. I gave Tyler his shower and had the nurse give him some benedryl and he fell asleep by 9:15.

Tyler's counts seemed to have hit bottom finally thank heavens. They will stay this way for probably about two weeks then hopefully will come back well. This does mean we are entering the most critical time for the mouth sores and stomach issues. It also means any infection puts Tyler at risk for it to turn life threatening. I'll be glad to get these next couple of weeks over with.

Friday, January 31, 2003 at 11:02 PM (CST)

Day +3 begins Saturday

Today was a good day. Tyler felt well all day and had school and physical therapy. Dad spent the day and I got to go home for a few hours which was nice too.

Tyler tried to eat a chocolate junior tastykake that he had been asking for all day yesterday but complained about a sore throat. He said it feels like he has a thorn in his throat. Looking in his mouth it looks like the beginning of the mouth sores they warned us about. These can get very severe. We had been spoiled as Tyler has never experienced the intense mouth sores that most children get. So far it is only bothering him a little so we'll see. My fear is that it will get worse before it gets better.

He was able to eat a yogurt and drink small amounts of liquid. The diarrhea has stopped (at least for today) and the blood pressures have remained pretty stable.

Tyler's counts are as follows: ANC 400 (good! Get down to zero! Strange how we want this to get to zero only to turn around and impatiently want it to rise again); WBC .4 (bottoming out, another good); Hgb 8.2 (same as yesterday so, no blood today); platelets 70 (dropping slowly).

Supposedly it takes about two weeks to see if the stem cells Tyler received on Wednesday like their new home and begin to graft.

A good day and another one down. Can't ask for more than that.

Friday, January 31, 2003 at 12:00 AM (CST)

Day +2 begins Friday

Let's see...Tyler ended up sleeping for four hours this afternoon (it's about 1:00am as I write this). When he woke up he felt much better. No headache and no stomach cramps. The diarrhea seems to have slowed down also. If it continues like this, it would be fine. An uncomfortable inconvenience but, manageable.

Tyler felt really well all evening. He played N64, did his homework and built two leggo models. No day can be uneventful though. The blood pressures continued to rise and we ended up given Tyler a medicine that you take under your tongue (similiar to nitrogylcerin). It is very fast acting and within minutes, his BPs were in the normal range again. He got as high as 143/123. This is considerable as he normally is in the 90 somethings over 50 something range.

He finished with the steroids today so hopefully the blood pressures will remain normal. They did start his IV nutrition today.

Not much else to report on. I won't have new counts until tomorrow morning. Hard to believe we already have one week under our belt.

Thursday, January 30, 2003 at 12:46 PM (CST)

Day +1

Sorry to just update, I've been trying to log on since last night and couldn't access the caring bridge sites, I thought it was just them. I've since found out it was my browser.

Transplant went well yesterday. Tyler had his last radiation at 4pm then he received his stem cells about 6:15 pm. It was a very small bag of totally clear fluid that resembled water. It took about 15 minutes to infuse.

Things are going ok. We are still fighting the battle with diarrhea and I have to admit that at this time, the diarrhea is winning. The docs tell me that this will continue for a few weeks until Tyler's counts recover and he starts to gain his health back. He is on so many meds that have side effects of diarrhea that there is really just no getting around this. He was very uncomfortable this morning and I had his nurse give him some meds to put him to sleep about 11:30.

I will probably have them start a low dose of morphine to help with the stomach cramps if these continue. They will start the liquid nutrition today as Tyler only picks at food now. He is hungry and asks me for things but then when he tries to eat, nothing tastes right to him.

He receives his last round of high dose steroids today. His blood pressures have been elevated which can be caused by the steroids so these are being watched. Other than that, basically, things are going as expected. Other than the cramping which I hope will become more manageable over the next few days, Tyler is feeling ok. Alittle tired but hey who wouldn't be.

Most of his counts have finally begun to drop. The docs said that radiation and steroids both can drive the counts up/wacky. I was concerned because I had assumed that by transplant day, Tyler's counts would all be pretty much at zero. His counts today were: WBC 1.7 (again while very low not totally bottomed out yet); Hgb 8.2 (Tyler will most likely get a blood transfusion tomorrow); platelets 97 (still hanging in there) and ANC 1700. Yes, I said 1700, for those that are familiar with the ANC numbers, that is what had me so concerned. However, I was assured that this is very normal and that the numbers are really just the last hoorah of the cells that are left in Tyler's blood.

Thanks for all the thoughts and prayers and for signing the guestbook. It means alot to us. Love, Noel

Tuesday, January 28, 2003 at 10:03 PM (CST)

Day 0, Transplant day is Wednesday

Tyler continued to feel pretty well today. This is his second day without any nausea at all. Both radiation sessions went fine. He did not eat breakfast or lunch then surprised me by eating a few small portions of various things (one mozzarella stick, bowl of cereal, slim jim) for supper.

He had school and physical therapy today. His energy level was actually fairly good until early evening. The steroids seem to not be effecting him other than a slight episode of tears and sadness late in the day.

Tyler is on a number of strong antibiotics for a variety of reasons: He had the dental surgery, to help with muscositis, to prevent infections, etc. Anyway, today they finally started to affect his gut. He has begun to experience diarrhea. At the moment this is just a discomfort. However, it concerns me because it can become very severe as Tyler has had in the past. I was told that they do not prescribe any meds to combat this in transplant. I'll need to discuss this further with the docs tomorrow.

Radiation is scheduled for 6am for the first session tomorrow (Wednesday) which means Tyler will need to get up about 5:30. I know the poor thing will be beat tomorrow. Hopefully, I can get him to take a nap in the afternoon. It's just very hard to nap during the day. There is always someone popping in to check on him.

I'll update Wednesday night after transplant. Wish us luck and say some extra prayers.

Tuesday, January 28, 2003 at 08:07 AM (CST)

Day -1 begins Tuesday

Yesterday was a pretty good day. Tyler did not get sick at all. He ate breakfast and lunch. He asked for something to eat for dinner but then didn't feel like eating.

All his levels have been back to normal so that is good. Radiation went well both times yesterday and this morning. He is eating a pack of tandy takes for breakfast as I write this.

Tyler had school yesterday and spent the rest of the day playing N64. He had his first dose of steroids at 10pm and will get them again at 10am today and again at 10 pm. He continues to take all his oral meds with no problem at all. I am very proud of him for that.

So far everything is going along fairly well. He feels well and does not have any mouth sores or stomach problems yet. He is alittle tired from the radiation but, that is to be expected.

Tyler's counts continue to drop as they should, his WBC was 1.5; Hgb was 9.9 and platelets were 148. They didn't have the ANC calculated.

Tomorrow is the big day although I believe the stem cells will be infused late evening as Tyler must have his last dose of radiation sometime late afternoon.

Monday, January 27, 2003 at 08:46 AM (CST)

Day -2 begins Monday

Yesterday was rather stressful for Dad and I although Tyler played N64 all day and took a 3 hour nap. The Chemo threw Tyler's sodium levels dangerously off. I never realized what sodium did for the body but we got a quick lesson. Seems not enough sodium can cause swelling of the brain and seizures.
Tyler was monitored very closely all day. His sodium was checked through lab draws every few hours and he received boosts of sodium through his IV. Through all this the levels kept dropping which had us very concerned then finally at about 4pm the level started to remain stable. By evening it had even started to rise slowly.
Tyler felt very well yesterday. He only got sick twice and looked good to us. He finishes his 2 hour pees this afternoon and did real well during this morning's radiation.
As I type this, he is eating a bowl of cereal!! Not sure if it will stay down but, it's good to see him eat for the first time since Friday.
He'll go for his evening dose of radiation about 4pm and the dreaded steroids start about 8 this evening. Wish me luck.

Sunday, January 26, 2003 at 04:12 AM (CST)

Day -3 begins Sunday

Yesterday was a pretty good day. Tyler had his six am shower and went back to sleep until nine. He was up all day playing and talking to us. He seemed to feel pretty good and had no nausea all day. He didn't eat a thing but did drink off and on. They started his Cytoxan about noon and Tyler must pee at least every two hours.
At the start he peed up a storm. He was peeing every hour, a tremendous amount which is good. they want to keep his bladder flushed.
He fell alseep about seven and I had a hard time waking him to pee at eight. He was not grumpy, just very hard to arouse. He only peed a small amount. It was the same at ten and twelve. I was starting to worry alittle since he was only peeing a very small amount despite high amounts of fluids being given to him in his IV. He also was still very hard to wake up and even when I did, he was very much out of it. His left eye even appeared to be drooping. Same thing at 2am even though by this time he had been given a bolus which is a large amount of fluid infused over a short period of time (trying to stimulate him to pee).
His nurse gave him a dose of Lasix to see if that would work. Finally at the 4am pee, he woke himself and seemed to be nice and alert and peed up a storm again. Thank God. That finally made me start to feel better. He peed again at 5am and was talking to me. Yeah!
I think he was just exhausted from being up all day, being woke up the two nights prior twice a night to shower and being on benedryl also, which makes him very tired. We decided to not give him the midnight dose of benedry to see if that would help him be more alert and it seemed to help.
The only drawback was he also had to throw up at four. I'm hoping he does not get terribly sick from the Cytoxan so we'll see. He fell back to sleep at five.
He gets his last dose of Cytoxan today at noon and I think the peeing must continue for another 24 hours.
Tomorrow morning at seven am he goes for his first total body radiation session. This is supposed to last about a half hour. He'll go again Monday evening for another session. This will happen on Tuesday and Wednesday also. Monday is also the day the steroids begin.
Tyler's counts yesterday were: ANC 1152; Hgb 10.8; WBC 1.6 and platelets were 181.

Saturday, January 25, 2003 at 06:02 AM (CST)

Day -4

I actually tried to update last night but the caring bridge sites were not loading properly. Yesterday was a good day. Thursday at midnight Tyler started to get very nauseaous. He had the dry heaves and was feeling really yucky. This passed by about 1am and he has not gotten sick since, which is very good. We went over to HUP via the indoor tunnel between the hospitals about 7:30 am Friday for Tyler's last cranial radiation.
By yesterday afternoon, Tyler looked better to me than he had since Thursday. He seemed to feel better and we played games and he even ate two helpings of bacon. The baths are going well. They really are not as big a deal as I thought they would be. Tyler falls right back to sleep after the midnight and 6am baths.
There are two oral meds that Tyler takes to coat the esophagus in order to help with the eventual digestive sores/muscositis. We have heard that they taste absolutely horrible and this can be quite a task to have the children get them down (they need to be taken 3x a day). Surprisingly, he seems to have no problem. I didn't even mention their taste, or let on that I knew they were yucky. I figured, let's just see how it goes. When it was time to take his meds, he did. He didn't realize that I was expecting a lot more of an argument/hard time for him to keep them down. Did the happy dance on that one, less battles are very good.
Tyler gets his last "6hour" bath today at 6pm. He then can go to regular daily baths. He will start his Cytoxan today about noon and the two hour pees will begin. They say this Chemo causes alot of nausea and a general poor feeling so we'll see. He will only receive this today and tomorrow.
Tyler felt well enough to have school yesterday and physical therapy.
We loaded up Tyler's games on the room pc and there were a couple on there already. He likes this one dinosaur game where you hunt dinosaurs (or get eaten, whichever comes first). Ok so it is alittle harsh but, he likes it and at this point if he's happy, we're happy.
His counts were as follows for yesterday: ANC 1848; WBC 2.2; Hgb 11.0 and platelets were 205. It should be a few days before Tyler needs any blood products with counts like these yet. I would assume they will drop pretty rapidly though after the weekend Chemo and the total body radiation next week.

Thursday, January 23, 2003 at 09:49 PM (CST)

Day -6
I'm not sure if I had mentioned previously how transplant is tracked. Today is considered day minus six. Transplant day is day zero and from then on it is day +1, etc.

Well, we're in. Radiation today was actually very quick. We got to HUP about 11:15 and they took us right in. Tyler was out in no more than 10 minutes. He said everything was fine. The techs over at HUP are so nice, the one girl gave Tyler a piggy back ride out of the room. We went over to clinic to have labs drawn and an exam by the transplant doctor. I had never met any of the transplant docs and was very impressed with our doctor today. He was very nice and answered all my questions. I felt like a bundle of raw nerves today, if the wind blew wrong I felt ready to burst into tears. I guess it was just all the apprehension built up. Our room was ready at about 4pm. We are back in the transplant area in a nice large room. I was able to unpack the car and bring in all our rubbermaid. We should take stock in rubbermaid we have so much of it. It does keep the room very neat though and keeps all the clothes, toys and linens clean and dust free. Tyler got sick again after radiation. We had just made it to the room when he made a dash for the trashcan. It seems like it hits him a few hours after the treatment. He ate breakfast this morning but nothing else. My guess is breakfast this morning was probably the last meal I'll get in him for the next month. He spent the evening building leggos (of course) and playing a game on the pc. Oh, yeah, we have a pc in the room. Yahoo. He got his first Chemo at 10pm and it will run until midnight. Then the first shower. He'll have to wake up at 6am for his next shower, then noon, six pm, midnight,etc until Saturday at midnight. He's sleeping now as I write this. Tomorrow is the last cranial radiation and he'll have the weekend off for radiation.
After we were all unpacked, I left the room for about five minutes to grab a bowl of soup. Tyler hadn't realized that I can't eat in the room. He was feeling well and we have the walkie talkies so I told him I would be right back. I figure as long as I can get one quick meal a day in, that's fine. Tyler says, do you have to eat? I told him I didn't think I could go 6 to 8 weeks without ever eating although, that is probably a good way to lose the weight I've wanted to get off. He's a trip, he rattled on, on the walkie talkie the whole time. One last thing before I go. This is so pathethic, it is almost funny. Many of you know that Tyler has had a stuffed pig since he was born. His brother picked him out as a gift while I was pregnant and he is VERY attached to it. Well, he can't have any stuffed animals (balloons, plants, etc) near him so they gave us special consideration and let me wash him and stuff him in a plastic zip lock bag. Poor piggy is all squashed up with his face mashed up against the bag. Anyway, I'm cleaning the room and look over and there sits Tyler hugging his plastic zip lock bag. I know it sounds sad and I guess in reality it is but, we bothed laughed about it. What a surreal environment.

Thursday, January 23, 2003 at 12:12 AM (CST)

Tyler had his cardiac stress test today. They had him peddle on a stationary bike all hooked up to a heart monitor with a breathing tube in his mouth which then clamped onto this very strange looking contraption on his head. He peddled for about 5 minutes, quite a workout. Then we headed over to HUP for his first cranial radiation. It took a while today. He came through it great. He just said that there was a yucky smell in the room. The tech said that sometimes the patients do complain about the smell during radiation. We got home about 5:30 and he polished off two T-bone steaks for dinner. The only symptom he seemed to have was a headache. He complained about our talking when no one was really even saying anything. He even said the people on TV were talking too loud. He was tired so between that and the headache, I thought an early night in bed would do him some good. About 11:00 the poor thing woke up vomiting all his supper. He had another attack about a half hour later. I feel so bad for him, this is only the beginning of a number of pretty crappy weeks. Tomorrow we go for his second radiation at 11:00 although they told us they are overbooked and we'll probably be there awhile. Then over to clinic to be admitted. Tyler is to start his Chemo tomorrow. The first two days is the Chemo that causes burns so he'll be bathing every six hours. Then on Saturday he starts two days of a Chemo that is supposed to make you feel very sick and which causes bladder damage so, he'll need to pee every two hours. Hopefully, he can sleep through most of the next four days except for when I wake him up to shower or pee. Monday, Tuesday and Wednesday he gets total body radiation two times a day along with very high dose steroids. They already warned me he will most likely be a monster due to personality changes caused by the steroids. Then sometime Wednesday night will be transplant. I will try to update or have someone update as much as possible over the next few days. Please keep Tyler in your prayers. Love, Noel

Monday, January 20, 2003 at 03:40 PM (CST)

Not much to report on, which in a way is a good thing. Our time at home is of course winding down. Tyler feels great and is eating and drinking well. We're pretty much packed to go in for the long haul. I took Tyler to the movies early Friday when we knew there would be hardly any people. He had wanted to see Kangaroo Jack. It was cute for the kids. Tyler enjoys going to the movies and we knew that it will be a long time before he can get out to a movie again. Tyler is still building leggos and knex. He picked out a leggo for his treat after radiation and grandmom dropped off some more new leggos. When we went to Toys R Us on Friday, he made out his wish list for transplant. Apparently there is a foundation that gives gifts to the kids in transplant. The hospital told Tyler to make up a wish list and give it to them when we are admitted on Thursday. His list was almost completely leggos. We'll enjoy tomorrow and then go to Chop for a stress test on Wednesday and then walk over to HUP for radiation. I'll update again Wednesday evening.

Friday, January 17, 2003 at 07:17 PM (CST)

Today went very well. Tyler had his radiation simulation, they measured him for radiation, made a mask and took x-rays. He did great! I was so proud of him. He laid on the table while they dipped a screen of hard plastic mesh in hot water. Then they laid the mesh over his face to form a mold. Once cooled, they mark the mask to determine where to give the radiation. This mask is then placed over his face (it covers the entire face very tightly) and screwed into the table so he can not move his head. I can't believe how great he did. He actually enjoyed the experience and liked the staff. They gave him some treats afterward and I took him to Toys R Us for another treat for being so good. More issues with the health insurance, seems Pennsylvania hospital dosen't take our health insurance (by the way, radiation is given next door in HUP not CHOP) and no one bothered to tell me this until we showed up for our appointment. But, I'm really not worried about that, we'll figure that out later. It did slightly delay his treatment while we "discussed" the issue. We then went over to clinic for pre-transplant blood tests, urine tests and a DNA swipe (just like on CSI). Our gameplan has changed slightly. We now have the cranial radiation on Wednesday, Thursday and Friday of next week instead of Monday, Tuesday & Wednesday. This actually is better since now we have Monday & Tuesday free. We also have a stress test scheduled for Wednesday. Then back in on Thursday to begin the hopefully final phase of this journey. Tyler's tooth is not bothering him at all. He is eating and drinking and never even mentions the mouth. He is stiff and sore in his back from the spinal tap/bone marrow aspirate though. The CAT scans came back clear and so did the spinal tap. I'm still waiting for the aspirate results but would assume that they must be good too or I think they would have been in the computer. They were not available when I checked at clinic so I'll call on Monday. All in all, it was not a bad day. I'll update again on Sunday. Love, Noel

Thursday, January 16, 2003 at 11:42 PM (CST)

Ugh, what a day. First, it took us an hour and half to get to CHOP because I-95 was bumper to bumper traffic. Then Tyler was scheduled for surgery at 1pm. You know when they wheeled him into the OR? 4:45. The poor thing was starved since he hadn't eaten since Wednesday night. The surgery was about an hour and recovery was another hour. It was a good thing they removed the tooth because the doctor told me it was infected. I don't have the results of the aspirate or spinal tap since I guess the docs left right after the surgery. We need to go to clinic tomorrow after meeting with the radiation people anyway so, I'll check on the results then. We'll need to leave by 8:30 tomorrow morning for our appointment so it will probably be another long day. Tyler is feeling remarkably well. He ate a bowl of soup, a slim jim and a bowl of ice cream when he got home. He is not complaining about any pain at all. I hope the same holds true for tomorrow. I'll update after tomorrow's visit.

Monday, January 13, 2003 at 10:32 PM (CST)

Clinic went pretty well today. We met with the doctor for pre-op concerning the dental surgery. They informed me that everything was set for "Friday" and I told them that we can't do Friday, that we have radiation. I told them that I specifically ran around like a nut last Monday back and forth from clinic to dental to arrange for this to be done on Wednesday and was there when the doctor told his staff to put Tyler on the schedule for Wednesday. Finally, they were able to make arrangements for Thursday to do the dental at the same time as his bone marrow aspirate and spinal tap. Actually, this works out better for us since it is one less day we must go down to CHOP. Then we headed over to clinic for an exam and labs. Tyler's platelets, ANC, Hgb and white blood cell counts were great. After that we went over to CAT scan early hoping they could take us and they did! Tyler did fine as usual during the CAT scans. I'll call tomorrow for the results. Our original appointment for the CAT scans was for 5pm and we got home at 5 instead so, that is a good thing. Tyler ate very well again today and his weight at clinic was 24.1 (about 53 lbs.) Not too bad. My goal is to get another two lbs on this kid before next Thursday.

Sunday, January 12, 2003 at 05:41 PM (CST)

Tyler is doing well. He ate very well today and has been eating ok the past few days. I would have liked to fatten him up alittle more prior to transplant so we'll see how we do this week. It may be tough from Wednesday on since he'll have his dental surgery then. He has been sleeping every day till around noon. He is having fun playing with his toys from Christmas and doing art projects. We're pretty much packed for transplant. Cleaning is only part way done but, I can even finish that while he is still in the hospital. This week will be busy going back and forth to CHOP daily. We had some company on Saturday and some more on Sunday. Tyler enjoyed seeing everyone since he knows that once we go back into the hospital for transplant he will be in isolation for a number of months. Time is flying by for us. While we are glad to get transplant started and over with, we do not look forward to the coming weeks. I'll update again after our CHOP visit.

Thursday, January 09, 2003 at 08:13 AM (CST)

Hi everyone. Tyler continues to feel great. It amazes me that that through everything he has been through, he just looks and feels so well. He has been busy with projects, sand art and Knexs the past few days. He just loves to build things. We're running out of places to put his projects. So far we have a robot and a helecoptor on the coffee table and the entire Harry Potter leggo set. Bionicles are all around also. We had a long talk yesterday about the things we need to do next week and Tyler understands everything and seems to be fine with it all. He's alittle scared about the dental surgery and bone marrow aspirate/spinal tap. Even though he has been through both before, he gets scared about being put to sleep. Who can blame him. He's always afraid they will start something before he falls asleep. So far he seems to have accepted the radiation plan too. We go next Friday for a simulation where they will show Tyler exactly what will happen the following week. Bribery is a good thing. I told him the cranial radiation may be alittle uncomfortable since he has to lay with a warm wet mask covering his face during the treatment but it will not hurt. If he puts up with it, I'll take him to Toys R Us on the way home. Believe me, we need that like another hole in the head but, if looking forward to that makes him put up with the treatments we'll both be happy campers. The CAT scans are Monday lets hope they come back clean and of course that the aspirate and spinal are clean also. Still trying to finish the big home cleanup and pack for transplant. Take care, Noel

Monday, January 06, 2003 at 12:12 PM (CST)

Everything went well at clinic. Tyler is holding on to his blood and platelets so we did not need any blood products today. We were able to schedule all of the outstanding tests we need for transplant and we'll be down CHOP almost every day next week for one thing or another. Monday is more labs, three CAT scans and a pre-op for the dental surgery. Wednesday is the dental surgery, Thursday is his bone marrow aspirate and spinal tap and Friday is a workup for transplant and a radiology simulation. The following week Tyler goes Monday, Tuesday and Wednesday for out patient radiation to the brain and we are admitted on that Thursday to begin conditioning (more Chemo & radiation) for the transplant. I guess we better enjoy this week while we got it. Tyler feels good and is eating and drinking well. He is playing with all the toys he got for Christmas. We're going to take it easy this week and savor the time we have before we begin this next very difficult phase. I'll update again later in the week. Love, Noel

Saturday, January 04, 2003 at 11:41 PM (CST)

Everyone is doing well. Tyler continues to feel great. We celebrated Christmas together this morning. Santa came last night as promised and we all were finally able to have our Christmas morning together. The kids both made out very well, I swear it looks like Toys R Us exploded in our house. We've tried to start the big cleaning the house needs to undergo for transplant. We'll go to clinic on Monday to see if Tyler needs any blood products and hopefully see when he'll be scheduled for the dental work, stress test and CAT scans. I probably won't update again until after we get home on Monday. It's just so nice being home and doing everything at our own pace. Take care, Noel

Thursday, January 02, 2003 at 08:21 PM (CST)

WE ARE HOME!!!!
While we did not make it home for New Year's Day, we did get to come home this evening. Tyler's ANC yesterday was 48 and they did not feel comfortable letting us go. In fact, they told us today (his ANC was 66) that we still couldn't come home. I told them that we really were hoping for some time together as a family before transplant and we missed Christmas and New Year's and I guess thank heavens they re-thought it and decided to let us go. Tyler swears it was his "angry face". When he heard this morning that we could not come home, he decided to snub the doctors. He really is a funny kid. When I told him that the docs had changed their mind, he said "See, I told you my angry face would work!" We'll be back at clinic alot but, it will still be nice to sleep in our own beds and eat our own food and be together. We go to clinic on Monday for labs and perhaps get a date for the dental work that Tyler must have done prior to transplant. He still needs to have a stress test, some CAT scans and a bone marrow aspirate/spinal tap. We are also still awaiting confirmation on the radiation dates for the brain. Tyler needs three doses over three days. We had been told they would be out-patient just prior to transplant but the radiologist had different dates so this needs to be worked out too. Who cares, I'd take having to go back there three times a week just to be released now. We're all beat so I'll update again tomorrow.

Tuesday, December 31, 2002 at 11:16 AM (CST)

WE HAVE AN ANC!!!!
Tyler's doctor (Dr. Leahey) called this morning to check on us, she really is so wonderful to always call on her day off. Anyway, she asked about his counts and I had told her the WBC was .8 yesterday with 20 cells and not much else. She said she really thought he would have something today and would call back. At that point Tyler's nurse came in and I asked her for his lab results. Unbelieveably, he had an ANC of 99! His WBC was 1.1, platelets were 100 (we had these yesterday) and Hgb was 9.9 and 100 cells were counted. They said we can probably go home tomorrow if his ANC is still there. Yeah! We had another bunch of pre-tranpsplant tests yesterday...pulmonary, dental and measurements for radiation. They did find a tooth that will have to be extracted before transplant but, everyone is telling me this should not be a big deal and hold us up.
Let's hope we can come home tomorrow. What a great New Year's present that would be.
Love, Noel

Sunday, December 29, 2002 at 10:51 AM (CST)

Things are going well. Tyler is still eating very well and drinking his 50 oz. a day. He'll do anything to remain unhooked. He is only on one antibiotic that he gets once at 2pm and twice during the night so he is pole free most of the time. His WBC is slowly climbing a tenth a day. As of yesterday it was .6 up from a low of .3. They are starting to see cells in his daily labs, yesterday they counted 20. Once we get to 100 it is usually not long before an ANC comes. I think we are on track for an ANC by end of this week. I came home Friday during the day to try to catch up on some much needed rest and Dad spent the day alone with Tyler. Don't you know they started a number of pre- transplant tests that day. While we are very glad to get these out of the way while we are in patient, Dad swears I planned this on purpose :-). Tyler had an eye exam, an EKG, an echo and a creatine clearance plus the radiologist came over to discuss the plan for radiation. Not to mention, Tyler still had school and art therapy. What a busy day! On Monday they have scheduled his pulmonary tests. This just leaves a stress test, a dental exam and three CAT scans. We hope everyone has a Happy New Year's. Love, Noel

Friday, December 27, 2002 at 01:57 PM (CST)

We hope everyone had a wonderful Christmas. We had a very nice day. Aunt Chrissy and family, Aunt Cara and family, Aunt Terry and family and Aunt Michelle & Uncle Ed and family. Thanks to everyone for the great food and of course Tyler was inundated with presents. I am overwhelmed by everyone's generousity. Tyler even received cards and presents from families we have never met. Everyone has been so kind to remember us and him during this time. Santa visited of course and Tyler tried mightily to stay up and catch him. He was sure being in the same room as Santa when he came would give him a leg up. He did stay up until 2am building leggos but then he finally fell asleep. Overall, Tyler had a great time. He got alittle sad Christmas Eve missing home, which is why I let him open his huge Harry Potter leggo set and begin building it. He loves leggos and it took his mind off being sad. Tyler is feeling well and back to eating and drinking. He had slacked off on Monday and Tuesday. So far he has only lost about two pounds since we came back in. There are no counts to report on, hopefully towards the end of next week. Love, Noel

Wednesday, December 25, 2002 at 12:36 AM (CST)

MERRY CHRISTMAS! I'm sure most of you are asleep about now. It's technically Christmas morning (1:45). Tyler is just going to sleep now, he's been up building a giant Harry Potter castle out of Leggos. This was the first Christmas eve in many years that we didn't spend cooking mass quantities of food for our open house, in fact Dad got us Outback takeout. Pretty cool actually, we had steak and crab legs with Uncle Rob and Aunt Sandi. The whole Blair clan came to visit us this morning and brought a bazillion cookies and the Harry Potter set, thanks guys! Uncle Steve and Aunt Colleen Carracio and family came bearing gifts and to visit all the way from the shore! It was so great to see them. Santa and clowns and heaven knows what else are supposed to be visiting here tomorrow (well, today). Tyler ran low grade fevers all day Monday and they started him on three IV antibiotics. It was bound to happen. Really, I'm surprised it took two weeks. Tyler is still feeling well though and has not run a fever since about six Monday night and his 24 hour blood cultures came back negative so that is good news. Connor had his clinic visit Monday so him, Mom Jill, Grandmom Janet, Traci and his twin brothers all stopped by. They surprised us both with gifts. Tyler got really cool wood models that he immediately built two of Monday night, then painted. He loves to build and he does it all by himself and unlike Dad, actually reads the directions :-) He also got window paint so he can't wait to decorate the windows in our room. Oh, did you check out the photo of Tyler in his reindeer ears? Thanks to Janet for putting the picture up for me! Lets see...Tyler got platelets today and will probably need whole blood tomorrow. No counts to speak of although as I've said, I would not expect any until after the first of the year. That's about it from here, we hope everyone has a great Christmas! Love, Noel

Saturday, December 21, 2002 at 11:30 AM (CST)

Sorry not to have updated for a few days. I wanted to leave the transplant information up for alittle while so everyone had time to catch up. Tyler is still feeling great. Eating and drinking well, no fevers or nausea. He is not hooked up at all since he is currently on no meds. He does get platelets every few days and whole blood about once a week but, other than that, he is pole free. There have been a number of visitors to the floor this week, a couple of the Sixers, the Kix soccer guys, Elmo and Santa. Since Tyler is not allowed out of the room, they come in to see him. Still no counts to report but I really don't expect any until after the New Year. Hope everyone has finished their shopping! Love, Noel

Wednesday, December 18, 2002 at 12:47 AM (CST)

Tyler is still feeling extremely well. He is eating and drinking and unbelievably has not yet run any fevers (let's hope I'm not jinxing us). We had our family meeting on transplant and I'll try to list the info we received since everyone has been asking.
First, the donor is a 9 out of 10 match which they tell us is excellent. We even have a date, we are admitted and start the conditioning part of transplant on 1/23 and the transplant itself happens on 1/29. This means if we do get out of the hospital in early January, we'll hopefully get two weeks at home before we begin.
I'll try to list the things that we know will happen. The whole process is almost barbaric and is like a form of torture but, we don't have a choice in the matter and God willing, the outcome will be worth it. Prior to being admitted, Tyler will have three days of out patient radiation to his brain. On the 23rd we will be admitted and he will begin one drug that he has to take for two days. This drug is so toxic when it leaves the body through the pores that it can cause burns so, Tyler will need to take a bath or shower every six hours. His linens and clothes must be changed and we must stick to the schedule exactly. Even waking him to bathe.
On 1/25 he begins another drug that can be very toxic to the bladder. Therefore he must pee every two hours no exceptions, again, being woke up to do this. Needless to say, I don't see either of us getting much rest for the first five days. On 1/27 he begins total body irradiation. He will get radiation twice a day for three days. In addition to this, we have the pleasure of him also getting IV predisone. This causes mood swings and Tyler has had this before and definitely experienced the mood swings, crying, very argumentative and just being down right nasty. Lovely, can't wait, as if he won't be nasty enough after the baths and peeing and general lack of sleep. Not to mention all these drugs carry the normal side effects of nausea and diarrhea and a host of others that I won't even get into.
This puts us on 1/29, transplant day and the real fun begins. Actually, transplant itself should be relatively easy. It does not take long and the stem cells are infused in much like a blood transfusion. But a few days to a week or so later is when terrible mouth sores, skin breakdown and maybe Graft Versus Host Disease (GVHD) can begin.
You all asked, so there it is. Hopefully we'll get to come home five to six weeks after transplant if all goes well. Then Tyler will be on medical isolation for a long time. This means no visitors at all, no going out except to clinic, etc. There are a number of other rules too that we'll find out more on later. For example, we know he can't be around stuffed animals, balloons, etc. There are food restrictions and preparation rules. The house and everything in it needs to remain very clean. Things like that.
Well, that's all for now. It is 2:20 and we're both still up. He is his mother's son in that respect. He wants me to build leggos. Love, Noel

Saturday, December 14, 2002 at 08:43 AM (CST)

We were admitted Tuesday to finish the second part of the second round of Tyler's Chemo. We were in our room by 5:30, which is excellent considering it's usually not before 8pm. In addition, we were lucky enough to get a private room right away. Tyler finished his Chemo on Thursday morning and has felt great. He only got sick twice so far and has been eating/drinking very well. Because he is doing so well, he is currently on no meds and not hooked up to is pole at all! His spirits are very good and we're keeping busy playing games and doing various art projects. One of Tyler's nurses (Lisa) brought him a large plastic Christmas tree with blow up ornaments. It's really cute and Tyler got a kick out of decorating it. We found out yesterday that Tyler does not have to get his hormone shots this round. Tyler was estatic at that news and we both asked the nurse to verify this twice because we didn't want the misunderstanding we had last time. I hope this holds true because it is like an early Christmas present to Tyler since he hates the daily shots most of all. This does mean that it may take longer for his counts to rebound but, we're take the longer stay over the nightly shots any time. Not much else to report on, so far so good. I hope this remains an uneventful stay. We have our family meeting on Tuesday about transplant so I should have some more info to report on that then. Take care and God Bless, Noel

Monday, December 09, 2002 at 10:08 PM (CST)

Tyler is feeling well. Tonight we went to Shady Brook Farms to see the Christmas lights. They really have a nice show. The flight to the North Pole on Saturday was alot of fun. Tyler didn't buy into the fact that we went to the North Pole but, he enjoyed it just the same. Well, our time at home is finally over. We go to Chop tomorrow morning and will be admitted once again. We'll remain in the hospital until sometime in January. Tyler will get two days of Chemo and then we'll just ride out the next few weeks of no immune system/counts. They scheduled a "family meeting" with us next Tuesday to discuss the transplant so I guess I'll have more news on that then. I'm not going to bring the laptop until we get a real room so I won't update for a couple of days. Let's hope we get a single room fairly quickly. Take care. Love, Noel

Thursday, December 05, 2002 at 07:04 PM (CST)

We're home! Thank God Tyler did not get a fever so we were able to be released today. We got out of there at 1:30 which is pretty good for CHOP. Tyler had Chemo Tuesday through 4am Thursday morning and then a needle with more Chemo at noon. We were on 7 North for the few days we were in and had very nice room mates. A little boy named Kyle and his mom, Betsy. It makes your stay so easy when your room mates are nice. Plus for short stays, I prefer 7N as the double rooms are much larger than the third floor. Isn't it just our luck to be released on the first December snow storm in years? We made it home fairly easily though. Tyler has felt pretty good today. Not really ready to eat yet but that is understandable. Yesterday he felt really crappy. I had them give him benedryl around the clock to keep him asleep. It's easier to sleep through the crappy days. By tomorrow I think he will feel even better. We're really looking forward to the North Pole trip on Saturday, I've heard nothing but nice things about it. We will report back in to be admitted Tuesday morning and remain in until sometime in January. Sorry not to have any more news on the donor/transplant. I was going to find out today but, with the snow storm alot of the docs and nurses weren't in and those that were, were very busy so I decided to just wait and talk to Dr. Leahey on Tuesday. Well, that's all for now. Those of you with kids, get out there and build a snow man! Love, Noel

Tuesday, December 03, 2002 at 07:43 PM (CST)

Hi Everybody,
This is Tyler's Aunt Chrissy, updating today. Noel asked me to let everyone know that Tyler was admitted today. Also, Tyler's doctor came to them with some GREAT news, THEY HAVE A DONOR!!! Yahoo!! Needless to say, they're thrilled. Unfortunately that's all the information I have about that at this point, it's all the information Noel has at this point. But right now, that's good enough for me. If all goes according to schedule, Tyler and Noel should be home sometime Thursday. Since Noel did not bring the laptop to the hospital this time, she will update again after they get home. Hopefully she'll have a little more info on the Donor situation by then.Take Care.

Monday, December 02, 2002 at 10:55 PM (CST)

Sorry not to have updated but we've been really busy trying to finish everything up before we go back into the hospital again. I did get probably 95% of my shopping done, which is good. We did pick out a tree. It's tall and looks pretty decent considering it's fake, just not fat at all. We'll get used to it. Tyler was able to "build it" (his term) and decorate it. There are alot of restrictions that we'll have to get used to with transplant, no live plants/trees, no balloons, no stuffed animals and that's just to start. We did get to have cake and ice cream for Michael on Saturday night. Since Tyler still can't be around folks, it was a very small gathering, we had Uncle Paul & Colin and Uncle Rob & Aunt Sandy. We're packed and ready for tomorrow. I know I probably sound like a broken record but, I really think tomorrow his counts will be high enough for them to really keep us this time. The tentative gameplan is to be admitted and start Chemo tomorrow. Finish Chemo early Thursday morning and if Tyler has run no fevers, we can come home JUST for the weekend. Then we'll be back in next week until sometime in January. Ugh!
We have not told Tyler in case in doesn't work out and we don't get to come home but, on Saturday the Make A Wish folks teamed up with the Willow Grove Air Base for a flight to the North pole. They take you on a plane with all the windows closed and taxi down the runway to a hanger that is all decorated to look like the North pole. Santa, elves, etc. are there to greet the children. It really sounds like a great time and I know Tyler would be thrilled so I hope we can go. I am not taking the laptop since we should be home by Thursday night so, I'll update then. Love, Noel

Thursday, November 28, 2002 at 08:56 PM (CST)

Happy Thanksgiving to everyone! We hope everyone had a nice Thanksgiving and enjoys their long weekend. We had a very relaxing day. We decided against the whole turkey thing since it was just us and since we really didn't find out until late we would be home, I hadn't shopped for the holiday. Don't get me wrong, we had plenty of offers but Tyler's ANC is so low, we stayed home. I decided to make cornish hens since Tyler loves them and enjoys helping me get them all prepared. Plus he thinks they are midget turkeys so I wasn't telling him any different. He helped me make the whole dinner, he really likes to cook. The last couple of days Tyler has been eating up a storm. Breakfast, lunch, dinner, snacks in between and two or three bowls of ice cream for a bedtime snack. Since he is not on steroids, it beats me where the big appetite came from. This is good though, he could use the weight. At clinic on Tuesday he was back up to weight he was prior to the hospital stay, yeah! With all this eating maybe we'll even get a few extra pounds on him. I'll be heading out tomorrow morning at five to try and start and finish my Christmas shopping. We are going to have cake and ice cream for Michael on Saturday night and during the day we will set up our "fake" Christmas tree. Tyler can't be around live trees with transplant so this will be our first fake tree. Hopefully it won't look too fake. This way Tyler can decorate the tree before we go in on Tuesday. On Monday night we'll go up to Shady Brook farms and see the Christmas lights. They have a nice setup there where you just drive through and see all the lights. Well, I'll update again on Saturday. Love, Noel

Tuesday, November 26, 2002 at 10:24 AM (CST)

We're still home! As I thought, Tyler's ANC was not high enough for us to be admitted for round two. He is following the same schedule as he did during our prior admits. It seems to take him three weeks to rebound. His counts were as follows:
ANC - 152 - dropped yet again
Platelets - 140 - actually increased from 76 on Friday which is really good
HgB - 11.6 - staying the same, within normal range
WBC - 1.9 - slight increase

He is scheduled to be admitted next Tuesday and I think we'll probably make this one. He was very happy to be sent home yet again. This does mean that without a doubt we will be in the hospital for Christmas though. Oh well, not much we can do about that. Also this would put us in the late January, early February time frame for transplant. Nothing new to report on that though either. We actually decided to postpone Christmas at our house. We have made special arrangements with Santa to have him come after round two so Christmas will be celebrated a little late at the Robbins household. Update more later. Love, Noel

Saturday, November 23, 2002 at 06:48 PM (CST)

Clinic was pretty qick on Friday since we basically only needed labs. Tyler's ANC dropped down to 289. His platelets were ok at 76 and his Hgb was normal at 11.1 so no blood products were needed. Not sure if that ANC can come up to at least 750 (and the platelets can't drop) in order for us to start round two on Tuesday. Tyler had fun at clinic, playing games and doing art. He is still feeling well. His neck is a little swollen and red at the point they inserted a line previously. There is no wound or discharge of any kind so I don't think it is infected. It's not near his broviac site. It just looks like the skin is irritated. I'll have them look at it on Tuesday. Little Michael's birthday is today. He is 14!! That time sure flew by. If we don't go back in the hospital on Tuesday maybe we can have cake and ice cream with his aunts and uncles but, we'll see. Thank God he is older and not upset about not having a birthday party. He was perfectly happy to have a friend stay over and go pick out some video games.

Thursday, November 21, 2002 at 10:18 PM (CST)

Still nothing much going on on the home front. Tyler feels great and is eating and drinking well while home. He received a package today from the Vermont Teddy Bear Company from Aunt Diane, Uncle Chal and Timmy & Joey. He'll be calling you guys to thank you for the "Super Bear". He's really cute, comes all dressed up like Superman with a mask and all. Now Tyler has another animal for his collection. He sure does love his animals, especially bears and of course, piggy. Doctor Brodure was teasing Tyler that infectious disease was going to come and confiscate piggy. You have to know piggy to appreciate that the comment is probably not far from the truth. Tyler has had piggy since he was born. Little Michael picked him out for his brother when I was pregnant with him. Anyway, he sleeps with all his animals and has to arrange each one at night before he goes to bed. We'll go to clinic early tomorrow to check his labs and should be able to come right home unless Tyler needs blood or platelets but, since he just had both on Tuesday, I'm pretty confident he won't need either. I had forgotten to mention that his ANC was 450 on Tuesday. This means that he is neutropenic and basically has a severely compromised immune system. Therefore, we're still keeping to ourselves and staying home away from people. Still good to be home though.

Tuesday, November 19, 2002 at 03:52 PM (CST)

We're Home! Not meant to be yet, Tyler's counts were too low to start the next round of Chemo so we're back home for another week. I looked up Tyler's history from last year and he always took 3 weeks to fully respond back so I would not be surprised if we are still not ready next Tuesday but, we'll see. His counts were as follows:

WBC - 1.8 slight drop from when we were released
HgB - 7.7 real low, we had to stay for a blood transfusion
Platelets - 16 - yes, I said 16! This is very low and Tyler has a habit of bleeding when he falls below 30 so I was very surprised to hear this. Obviously, we also received a platelet transfusion today.

It was a long day due to having to receive both transfusions. It took two hours for the blood products just to arrive in clinic. We past the time by visiting 3 east and meeting up with another family we have met through the Caring Bridge sites, Dina and Anthony. It was great to meet them. We also caught up with some of the nurses and staff and took a small walk (Tyler likes to harrass the pigeons). By then, the blood was there and Tyler could get hooked up. Luckily, I had thought to pack a lunch for him. So, Tyler ate lunch, got his benydryl, I covered him with a blanket and he slept for 3 hours!!

We go back to clinic again on Friday to check his levels and we are on as an admit for next Tuesday. We'll see. I'll update again later. Love, Noel

Monday, November 18, 2002 at 10:52 PM (CST)

Well we had a great week at home. We all really needed it. It was just the four of us and it was really laid back and nice. We did absolutely nothing (except for the one afternoon dinner out)! I know we didn't see anyone and I'm sorry for those that wanted to stop by but we really just wanted to chill. Having only one week is such a short time to regroup and refuel. We report to clinic at nine tomorrow morning and if Tyler's counts are still high enough, we'll be admitted. Usually admitting day is a long one. They start Chemo over in clinic and you have to wait for the Chemo to come over, then you have to wait for a room. In our past experience, we have never been in a room before 6pm. I'll know more of what the gameplan is tomorrow. I'm not bringing the laptop tomorrow until I know what our room situation is so, not sure if I'll get the site updated again before Wednesday. So here we go again, counts are good, Chemo to kill them all off again then waiting forever for them to return to get a short break and do the whole thing all over again. It's like some barbaric Ground Hog Day movie. Let's hope round two goes as smoothly as round one. We really couldn't ask for any better than that. Oh, I did sneak Tyler up to the mall this afternoon to see Santa. He was real excited to see him. I asked him what he asked for and he said he couldn't really think of anything but wanted Santa to get him out of the hospital. Not quite sure how Santa tiptoed around that one. Dad had to work late tonight as it was confirmation night at St.Martha's. We went to pick him up at work and the Cardinal was there for the confirmation. He gave Dad a cross for Tyler and blessed him. Update again later, take care. Love, Noel

Saturday, November 16, 2002 at 01:03 PM (CST)

Things are going well at home. Tyler is feeling great and eating very well. Remember I said we were going to Applebee's on Thursday...well we went over early and we were the only ones in the restaurant (part of our plan) and Tyler ate a steak and salmon combo and drank an entire strawberry shake. We were very glad to see that. He's been eating well at home too, so maybe he'll have some of his weight back before the next round. The sleepy head has slept till noon the past two days. Nothing much going on otherwise. I am going to take Tyler up the mall on Monday to see Santa. This will probably be the only chance we get so, we'll head up early when there shouldn't really be anyone around. Little Michael turns fourteen on the 23rd and since we probably will be in the hospital, we'll get a small cake so that we can sing happy birthday to him on Monday. So far so good regarding the platelets, he must be holding on to them as he has not had any nosebleeds, etc. Enjoy your weekends, I'll update again on Monday. Love, Noel

Thursday, November 14, 2002 at 01:16 PM (CST)

Clinic was actually pretty uneventful. Tyler's HgB was 8.9 so we did not need a whole blood transfusion (yeah!) and his platelets were 44. While this is very, very low, we did not get platelets because they want to see if he has begun to level off and make them on his own. We can't start the next round of Chemo until he can maintain a platelet level of at least 75 on his own. So off we went back home. If he starts to bleed over the weekend (nose,ears,etc) we'll need to go to the ER at Chop for platelets. Let's hope that doesn't happen because it is more of a pain in the butt than anything else. The bleeding doesn't really scare me because I'm used to it although Tyler is not particularly thrilled with it. The tentative gameplan is to report back to clinic Tuesday morning for a complete exam and begin Chemo if his counts are ok. If not, we'll come back home for a few more days. We're ok with it either way. Home is good but, getting started has benefits too because then we might finish up in time to get a break at Christmas. Either way it's out of our hands so... We're off to Applebee's tonight for dinner (thanks to Pat and her family!). Pat remembered that this is Tyler's favorite restaurant and she generously sent him a gift card. Thanks to everyone at Prudential (mom's work) too for the gifts you sent the boys. Michael is already using the walkman as we speak. He had been going through withdrawal since his had broken. Tyler was playing his gameboy games today at clinic and in the car. He loved the movies too, now maybe I won't have to watch Shrek twice a day ;-). Everyone has been so wonderful, Karen and her work have sent food supplies so when it was hard to get to the food store there was stuff at home. Aunt Esther sent some very delicious meals over. Aunts Michele & Chris and Uncles Ed and Paul have kept us eating well in the hospital (not to mention videos and Halloween treats). Aunt Karen and her family and Uncle Ed Z and his, had given Tyler videos. Jill, Kim and their families have done more than I can even name. Aunt Terri and Uncle Jim delivered Halloween goodies, Aunt Cara and Uncle Rob and Sandi have been there for much needed rides to hospital. The neat gifts from Kim & Brian, our friends from Michigan. All the cards, e-mails and guestbook entries from everyone. I know I'm forgetting to mention things. There has just been so much, thank you to everyone. We really appreciate everything you have done. Oh, Joey, Tyler got your card with the picture you drew of him. Chop actually forwarded it to our home although I don't know why since we were in patient at the time so we just got it. He laughed because he is a Devils fan (boo), Dad got a kick out of it. Thanks again to everyone and we hope to see everyone soon. Hopefully, Tyler's counts will allow us to have some visitors before transplant so we can get to see everyone before the long isolation period. They are really strict now as they do not want to jeopardize transplant and we certainly agree. Take care and I'll update on Saturday. Love, Noel

Wednesday, November 13, 2002 at 07:20 AM (CST)

Tyler is doing great, he ate really well yesterday and enjoyed sleeping in his bed. We're trying to fatten him up over the next few days before we return. He lost 5 lbs in the hospital towards the end when he wasn't eating as well. His taste buds seem to be coming back but I'm sure they'll go again next week. We're just taking it easy and relaxing. I'm trying to get the house back in some sort of order since we were gone a month. It's hard to believe it's been a month already. We have clinic tomorrow. I wouldn't be surprised if Tyler needs a platelet transfusion, let's hope he doesn't need blood too since that is a long transfusion (over a few hours). I'll update tomorrow when we return from clinic.

Tuesday, November 12, 2002 at 07:45 AM (CST)

We got to come home yesterday!! What a busy day, sorry I didn't get to update. Tyler had his bone marrow aspirate and spinal tap with Chemo in the morning. Then we didn't have the CAT scan on Sunday so we had to have that yesterday too. Then they needed an echo of his heart. Then there were alot of arrangements and paperwork to go over regarding the meds he came home on and the home health care. We didn't get out of there till close to five so of course we hit rush hour traffic. I had to go to the pharmacy once we got home to get Tyler's prescriptions filled and then none of us had eaten so we had too order something to eat and by then we were all exhausted. We're only home until next Tuesday and then we go back in. They don't want to give the Leukemia any time to return so the treatment is more aggressive this time with very little breaks at home. By the way, all Tyler's tests came back clear! We go to clinic on Thursday to check his labs and probably get a platelet transfusion. Tyler's ANC was 1751 and they had said we would go home on the GCSF shots but I was able to talk them out of that. Tyler really hates the shots and the week break off of them will mean alot to him. Not much to report on the donor situation but they told me yesterday that we tentatively look on schedule for sometime in January. Tyler is so glad to be home.

Friday, November 08, 2002 at 09:13 PM (CST)

Another update: They told me tonight at 10pm that Tyler is scheduled for his CAT scan for sometime on Sunday. This is great news since hopeully we'll be able to get out of here Monday afternoon!
MINI UPDATE WITH SAT.'S COUNTS:
ANC - 247 (WHoo Hoo)
Platelets - 40 (We'll need these tomorrow)
WBC - 1.3 (yeah)

Ok, here's today's lab results:
ANC - 36
WBC - .9
HgB - 9.1
Platelets - 54
Cells counted - 50

So the ANC is still creeping up which is good although, it sure is going slow. The WBC needs to come up a bit and we need at least 100 cells. Blood (Hgb) Tyler has always held on to pretty well and if need be, then can always give us a transfusion as a out patient. Platelets he'll probably get again on Sunday, these too can be given during a clinic visit (plus they transfuse in under an hour unlike blood which takes a few hours). Tyler will have another bone marrow aspirate and spinal tap on Monday, please pray for his marrow to come back clear. This will mean the leukemia responded to the chemo and is gone. His blood has been blast free but the leukemia could still be present in his marrow so this is an important test for us. I think we have a good shot at being out of here by Wednesday if the ANC starts to come up alittle faster and his WBC cooperates. The only other thing we would need is a CAT scan and I will be bugging them to schedule that when I talk to the doctors on Monday.
Tyler is still getting better with his eating. He is by no means back to normal but at least he is eating. I'm trying to convince him to drink some of the high calorie protein drinks they sent up for him to sample (Boost, Ensure, Pedalyte) but so far he turns his nose up. I am going to resort to lying tomorrow and just tell him I made him a glass of chocolate milk and see how that goes.
He is slowly becoming more comfortable with his hair loss at least around us and even most of the nurses. He received a very pleasant surprise today. A big bright box full of goodies and toys from our friends in Michigan, Kim & Brian. This was his first mail delivery while in the hospital and boy was he excited. The nurse was teasing him saying it was for a Tyler Robbins but since he could not prove he was Tyler, she might have to give it to someone else (Tyler won't wear a name bracelet as it irritates his skin). So he jumps out of bed, grabs his IV pole and shows her the name on his IV bags and tubes. Smart kid, I forgot the bags were labeled.
I'll do a mini update tomorrow with his counts once we get them.

Thursday, November 07, 2002 at 09:19 PM (CST)

ANC is 11 (which is practically zero but it feels better writing). Other counts pretty much the same. I wouldn't be surprised to see it go back to zero again but I think by Sunday we should have one that will start to climb. I hope so as Tyler's poor thighs are really starting to look like pin cushions from the GCSF shots I give him every night to stimulate cell growth. They are all black and blue and he hates getting them. He is feeling very well and is starting to eat again. Today he had bacon for breakfast and corn on the cob and london broil (from home of course) for dinner. He enjoys school each day with the teacher that comes to his room. He also likes playing volley ball in his room with the physical therapist. Not much art this week since the art therapist is away. She left Tyler her bead box and he has been making me jewelry. We watch Shrek twice a day since this is currently Tyler's favorite movie. Not sure if I mentioned his latest plot in another entry, he wants to get the spiderman web blaster. It's a glove that you wear that shoots webs. He has a whole list of people he wants to shoot. It's really not a bad idea. I may pick one up for myself. I can think of a few people I'd like to web too. Perhaps even Tyler at times. On second thought maybe it is not such a good idea. Since we spend so much time together we can get on each other's nerves sometimes. The nurses might come in to find two web cocoons. Well, that's all for now. Let's hope for some big numbers soon. Love, Noel

Wednesday, November 06, 2002 at 09:29 PM (CST)

ANC still zero, platelets were 31 so Tyler got platelets today. Other labs pretty much the same as yesterday. We're actually still on target relating to counts although it seems like it is taking long. We had been teased with that little showing on the weekend. Tyler feels great and finally ate again today. He took me up on my offer of a hot dog and devoured it. Having the fridge in the room is sooo convenient (thanks Doreen & Gregg). The resident told me this morning they were adding another antibiotic to Tyler's regimen "to provide more coverage" which struck me as odd since he has not had any fevers or shown any symptoms of anything new (rashes, sores, etc). I figured I would question the attending physician during rounds. The Clyndamycin came up before I saw him so Ty got one dose (not a big deal, we actually have been on Clynda during our first go round and I am familiar with the drug) but, guess what? It was a mistake, Tyler was not supposed to get it so they were glad I questioned it. Let's see, what else is new, my eye is slowly returning to normal size. That's a good thing. Oh, Tyler got some artwork put in the "Flyer's Art Gallery" located in the hospital. It's a penquin, really cute. Still having school, art therapy, music therapy and physical therapy. No news to report on the donor situation, I'll try to remember to ask tomorrow for an update on that. Guess that's all for now. Love Noel

Tuesday, November 05, 2002 at 11:01 PM (CST)

ANC still zero, WBC & HgB holding steady. Not much to report on the home front, Tyler is still feeling well. He did not eat at all today although it does not seem to be affecting him. I've tried offering pretty much everything but no luck. Hopefully tomorrow I can get something in him. He is still drinking great which means he can remain unhooked almost all day except for one half hour where he gets his antibiotic. His mouth sores look a little worse but he says they are not bothering him at all and he never complains about them. They should go away as soon as his counts come back. Tyler won at bingo, big surprise. He wins so much they probably figure we cheat. When he won, I let him go upstairs with me to pick out his prize. He wore a mask and we made it real quick so he was not out of the room very long. It meant alot to him to get out and pick out his toy so while technically, he shouldn't have gone....Thanks to everyone who signed the guestbook. Tyler enjoys hearing them. Mom still looks like a mutant (due to the sty thing) and Tyler is quite willing to point this out. Can't think of anything else to say so until tomorrow. Love, Noel

Monday, November 04, 2002 at 10:16 PM (CST)

No ANC today but his WBC came up some more. Things still look promising. Tyler continues to feel well and has quite the busy social schedule. He had school today from 11 to 12, then physical therapy at 1:30 and music therapy at 4. In between were doctor rounds, homework and trying to get him to eat. He is still drinking all the fluids he needs but he has lost his appetite. I get some food in him but, not much. I found out today that the taste buds "die off" from the Chemo and it usually takes a few weeks for this to happen. Well, we are right at that time. He has lost all his hair in the last couple of days. I guess I always assumed the appetite loss was just due to Chemo and not that the Chemo really killed the taste buds but, it makes sense if you think about it. Funny how right at the time the hair follicles died, so did his taste buds. He is not as comfortable with his baldness this time. He is very worried about what people think of him and he was very sad looking in the mirror. He has taken to wearing a doo rag which came courtesy of the biker Santa visitor on Sunday. Tyler got a kick out of the visit and will not be seen without the doo rag by anyone (except me & Dad). Personally, I have a fondness for bald men and find them very attractive (gee). Tyler wasn't buying my sentiments. He told me that he has a "different baldness" than Dad and "Dad is old so it's ok for him to be bald". Guess he has a point although Dad may argue the "old" part. Bingo tomorrow night, so I guess I'll get my exercise. Well, that's all for now. Love, Noel

Sunday, November 03, 2002 at 11:09 AM (CST)

Tyler's counts went down this morning (as we expected). His WBC was 1.0 yesterday and today was .9; his ANC was 0 today and his platelets were 80 (he had a platelet transfusion last night); I actually forget his HgB, I believe it was 10.8 which is still holding. They are still counting 100 cells and things still look good. I'm hoping that he'll get an ANC (absolute neutrophil count) that will hold on by mid week. If this happens we can schedule the CAT scan and hopefully get out of here soon. Michael called me while I was driving here to tell me that the Toys for Tots bikers (yes, bikers) were down at the hospital and so was Santa(that's even more unbelievable then the bikers, did Thanksgiving pass and I missed it?). I'm sure Tyler will get a kick out of both, hopefully they will come to his room since he can't go to them. Update more later. Love, Noel

Saturday, November 02, 2002 at 10:39 AM (CST)

Hi everyone, Tyler is doing great. Another busy day yesterday with art and physical therapy. They counted 100 cells in Tyler's labs and his WBC went up to 1.1. Tyler's cell count has consistently risen the last few days and I was quietly being optimistic. Dr.Brodure checked on Tyler yesterday and was very pleased and thought we might get an ANC by Monday if things continued on this route. I told him from his lips to God's ears. Guess what!?! This morning's labs showed an ANC (the measure of his immune system)of 20! That is extremely cool! Now, those of you that have been down this road know two things, one it is a weekend and we've had trouble with the weekend labs being accurate and two, the ANC is a funny thing. It can come and then disappear as quickly. Also, realistically 20 is still nothing but, it is a very good sign. Technically they would not be looking for an ANC until day 28 which is not until November 11th. Let's hope we are ahead of schedule. If the ANC stays and continues to climb, they will schedule a CAT scan to check for a fungal infection. During the last protocol, two days with an ANC over 250 meant we could go home. I'll check on this on Monday. Everyone pray to the ANC God and maybe we can get a break at home sooner than we had expected. More tomorrow, Love, Noel

Thursday, October 31, 2002 at 10:46 PM (CST)

Today was a very good day after all. Tyler has been feeling well. He was a little sad this morning thinking about Halloween but, they did such a wonderful job here that he quickly forgot about being sad. He had it all planned out that he would ask his doctors during rounds if he could have special permission to go out of his room and onto the floor for the "parade". He told them he would wear a hospital mask under his real mask to block out the germs. They gave Tyler permission to attend the parade. The kids that could, put on their outfits and paraded down our hallway. At each room, one of the nurses or child life therapists sat with a box of goodies to pass out. Tyler had a great time. Then later his cousins Colin, Jamie and baby Sean came dressed to visit. They had taken an extra basket with them when they went out trick or treating and collected candy for Tyler. He really enjoyed himself today. Guess what, Mom was even able to get in on the act. Appropriately enough, when I woke up this morning, my eye was all swollen up. I think I have a sty. Anyway, without even trying I look like some sort of mutant! Hope everyone had a good Halloween. Love, Noel

Tuesday, October 29, 2002 at 08:45 PM (CST)

Sorry for the late update. Everything is fine...the spinal fluid came back totally clear! Just really busy around here believe it or not. Even this morning started off busy. Tyler woke up early and with all the antibiotics and anesthesia yesterday, guess they got to his gut. Needless to say, he needed and shower right away (which can be a small ordeal in itself)and I needed to strip his bed. Then I ran up to the family center to throw in a load of wash. Ran back down and by the time I went back up some ignoramous had taken our wash out of the dryer and left it there wet so they could put theirs in. OK, mild setback, rewash the wash. Then had a student nurse who wasn't quite sure how to unhook Tyler tubes (and asked me, which I know how, but that doesn't leave me with a big comfort level) and then tried to flush his tubes without using alcohol first (Luckily, I caught that too). Kind of bit her head off, poor thing. Sorry to the onco nurses who read Tyler's page, you rock but, Mom gets a little stressy sometimes and when all this happens by 10 am I get a little frazzled. Guess I need some more patience but that has never been my strong point [I know that surprises you that know me, I write with a grin :-)]. Then the docs made their rounds, then school, then music therapy, then Dad and I met with the physical therapist, then homework, all the while nagging Tyler to eat and drink. Which he does and is doing great but, if I didn't nag, he wouldn't quite as well. Then BINGO! Tyler's favorite time of the week. So what happens, no bingo pages were delivered for him to play with. The games start (they play via closed circuit TV from their rooms). Now Tyler is all pissy because they have started and he can't play. So I run up to the fifth floor, get some bingo pages, then run back down. Now he wins, so it's back up to five to get a toy. Run back down, walk into the room and he says he won again while I was gone. Back up to 5 and back down again (all the while hoping the friggin bingo game is over by this point). Stop laughing, don't think I don't know that's what your doing! Just kidding, I'm laughing myself as I write this. Thanks for all the prayers, keep up the good work. Love, Noel

Sunday, October 27, 2002 at 01:08 PM (CST)

Well Dad built a model and Mom put all the stickers on and Tyler supervised. Not sure where the team effort on his part was. Oh well, he enjoyed the whole process anyway. Tyler has been running a borderline fever (38.0, 38.1) since last night. Since he did it three times, they have taken blood cultures and started him on Vano & Gent two more antibiotics. He is still feeling well although tired today. I loaded some of his PC games on the PC in the room so he can play those too now. Not much else going on. Hopefully by mid week we'll have some more info on how they are progressing with the bone marrow donors. Counts still zip as expected. No blood products today. Shots are getting harder for Tyler to tolerate. His poor thighs are black and blue and he dreads them each night. I hope his counts come back early just so he can stop the shots. The next spinal tap will be tomorrow (hopefully in the morning). Say a prayer tonight for clear spinal fluid. Love, Noel

Saturday, October 26, 2002 at 10:11 AM (CDT)

Tyler's doing well. He had a good day yesterday. No counts for those of you that remember those days although, I wouldn't expect any for probably two more weeks. He will get platelets again today as his platelets were down to 23. He gets platelets pretty much every other day now. Speaking of which, his father and I and his aunts and uncles should NOT donate any blood products (either whole blood or platelets). Not as a direct donor or any other sort of donation as it could potentially make it's way to Tyler. The reason is that his donor will be a genetic match to Tyler and they don't want him to build up any sort of immunity to the potential marrow. Really no news to report on the donor situation. I would not expect to have any to report for a while. It takes time to contact all the potential donors. The nightly Ambazone is going great, no reactions at all. No fevers. Remember when I had said that Tyler wasn't talking and basically just staring into space. Well, those days are over. Now he never stops talking, LOL. He just goes on and on and on. Not complaining (well ok, maybe a little), I'm glad his attitude is much better. Guess the poor thing is bored and used to being able to chat with his friends at school and the family at home and blow off some steam. It's tough being confined to the room and really just having his father or I to talk too. Dad and Uncle Rob bought him some models so Dad and he will be building those this weekend. I'll update again tomorrow. Love, Noel

Friday, October 25, 2002 at 12:09 PM (CDT)

Tyler had a real good day yesterday. Still feeling good, eating and drinking. He had school. We were not allowed to go to the movie but, that's ok. The night was a bit hectic, that is why I didn't update. I did not have the chance to get on-line. Tyler ran a fever about nine pm. The docs decided to put him on Ambazone [sp]. This is an anti-fungal medicine. For those that are unfamiliar, funguses can be quite common and deadly in those without an immune system. Unfortunately, since he has no immune system, they can't rule out a fungus until he gets an ANC back and they can do a CAT scan. Soooo they tend to treat conservatively as if he has one. He gets the Ambazone nightly (in his IV). It did not come up from pharmacy until about 2:30 am and runs over an hour. This medicine can have side effects so we watched him like a hawk until it was done. He did not have any of the side effects so that was a relief! Last time, some of you may recall, he had severe side effects to Ambazone's sister drug Anfoterricine[again, sp]. His blood pressure shy-rocketed, his heart rate sky-rocketed, He spiked fevers of 106 and had seizures. Needless to say, I was a bit worried about his getting the drug for the first time. In addition, he has to take Tylenol prior to the drug. I woke him up about 2am and when I rolled him over I saw that he was laying in a small pool of blood. He freaked and I tried to remain calm so he didn't freak more (not an easy thing to do, I might add). I checked his broviac right away and it seemed fine so I got the nurse in and here it was the IV line that went into his broviac that had a crack. Blood was seeping out of the crack. The lines were changed and I cleaned Tyler and the bed up and settled him down again. I do have to wonder if the crack lead to a contaminant which in turn is causing the fever/infection. Not much we can do about it now though. He woke up fine. No more fevers. Still feels well and eating so we'll play it by ear. Good news! Doctor Leahey ran in to tell us that the preliminary hits from the national bone marrow registry came back and Tyler has a "number" of potential donors. They will begin making calls to the folks that matched to see if they are still willing/able to come in for the second round of testing. Dr. Leahey seemed positive that we will get a match so keep the prayers up. Tyler has another spinal tap on Monday to check the spinal fluid. Again, pray hard because we want that to remain clear. Update more later. Love, Noel

Wednesday, October 23, 2002 at 09:15 PM (CDT)

Tyler still feels well. School and art again today. He is eating and drinking great, so he remains unhooked most of the day. No fevers as of yet and he looks wonderful. Tyler had to get a whole blood transfusion today as his HgB was 8.2. Platelets were 97 so no platelets needed today. ANC is 27 which is basically still zip. I forgot to mention yesterday that it was CHOP bingo night. Apparently Tyler still has the magic touch as he won two times. He was very excited. He is taking his nightly shots like a champ. They are having movie night in the hospital tomorrow night and are showing Monsters Inc. I'm not sure if they will let Tyler go or not. If I have him wear a mask and we sit separate they might, we'll see. He feels so well it's hard for him to stay cooped up in the room.

Tuesday, October 22, 2002 at 11:00 PM (CDT)

Another good day. It has been like grand central station around here so I want to apologize to those of you that have called and I did not answer or to those that I cut short on the phone. I got Tyler up at nine to wash up and eat before school. He had school at ten, then the art therapist stopped by, then the doctors had rounds, we had a few visitors, then Comcast sent some folks over with pumpkins and paints and they went to each child's room and made Halloween pumpkins. Then Dr. Leahey came by and we learned a little more about the bone marrow transplant. The music therapist stopped, we had homework and all this was by like four o'clock. Phew, I think I did less at home working full time! It is really good to keep busy though. It helps to pass the time. Speaking of which, big kudos out to my girlfriend Jill...she lent me her laptop. Can you say sanity for Mom?? I may never sleep now,this is way cool. Tyler is eating and drinking and feels great. Keeping busy has brought back his old personality. I think he is the healthiest sick kid I've ever seen. Got to run...Love Noel

Monday, October 21, 2002 at 10:27 PM (CDT)

Monday was another good day. Surprisingly busy, Tyler started school today. His teacher comes to his room to tutor him and this lasts about an hour. Of course the doctors make their rounds. His art therapist, Jen, came and spent an hour with Tyler. He worked with clay today. He absolutely loves art. Jen said she should be able to come twice a week to work with Tyler. Tyler had his first shower since we came back to the hospital. That took some time too, since we had to work around getting his "tubies" wet. The child life worker came and dropped off a project for Tyler to do, making pumpkin figures and we had a visitor, Aunt Karen. Tyler ate pretty well today. He had quite a bit of bacon for breakfast and two apples for lunch. He is drinking very well (about 32 oz. today). In between all of the above, Tyler worked on some art projects I brought from home and he spoke on the phone to Dad and grandmom, Michael and his doctor, Dr. Leahey. It does him good to keep busy. Mistake about shot I had thought he would not be getting. He actually is going to have to get the nightly shot and we started tonight. I'm really alright with him getting the shot since in reality it assists the immune system in returning and without it, it can take even longer to come back. Besides taking that much longer for us to get home, it also means that Tyler would remain open to infection for that much longer which of course, is not a good thing. Tyler accepted the miscommunication pretty well and has resigned himself to the nightly shot. He still is not happy about it but, he took it like a trooper. Unfortunately, I get all the crappy jobs. I asked Tyler if he would prefer the nurse give him his shot but he wanted me to do it (yeah, I feel like a crumb hurting him). He had been taking eye drops every six hours up until Sunday and he had wanted me to give those instead of the nurses also. Eye drops don't necessarily sound so bad except these burn going in. Lets see, what else went on today...Tyler's counts have basically hit rock bottom. He will receive a whole blood transfusion tomorrow since his HgB was 8.6 today. He probably will get platelets again on Wednesday. No word on the donor situation yet. I'll ask the doctors tomorrow about how long it ususally takes to hear. I'll update again tomorrow. Love, Noel

Monday, October 21, 2002 at 05:23 AM (CDT)

Sunday was a really good day. Tyler finished his chemo for this round and was feeling much better. The fevers have stopped for now and he was even able to be unhooked from his "tubies" for a few hours. He ate breakfast and also had dinner (which consisted of three pieces of mayonaise toast, but we'll take it). He was alert and talking. He spent the day with Dad as I had to do some errands and he drew some pictures and played in his room. Sunday evening our friends Jill, Janet, Traci and Connor and also Kim and Matthew came to visit. It did both of us good to see these guys. Matt and Connor both have AML and are doing great. The kids had such a nice evening playing together. I think this did more for Tyler than anything. It was so good to see him up and about and laughing. We let the kids play in Tyler's room since he is not allowed to leave due to low counts and it is safer for him in his room. The adults gathered in the family room (right next door). This was definitely the first time since last Sunday that I saw the old Tyler. Today Tyler will most likely start school. His teacher from CHOP will come into his room and use the lesson plan Tyler's class is using. We have all of Tyler's school books here. Since Tyler really likes school I think this will do him good also. We'll even have homework to do each night! I've asked the art therapist and music therapist to come see Tyler. Hopefully if he is feeling better and we can keep his mind occupied, the time will go quicker for him. I checked my old calendar from our first treatment in 2001 and we were in the hospital 37 days the first round last time. Soooo...I would expect somewhere around this length of time this go around. Last time Tyler did have the GCSF shots nightly (they help the body rebuild the immune system) and this time Tyler's doctor told him he did not have to take them (he really hates the shots). Without the shots we may be here a little longer since he won't get that artificial help. Regardless, it looks like we may just make it by a day or so to be home for Thanksgiving. That's so far away though that we're not even thinking of it. We really just take it one day at a time. No word yet on the donor situation. Love, Noel

Saturday, October 19, 2002 at 02:22 PM (CDT)

We finally received some good news, as some of you have heard. Tyler's spinal tap was CLEAR!!!! I actually asked the doctor to repeat herself since I did not think I heard right. We had been advised (and with our luck so far, expected it)that it could take a good six spinals with additional chemo directly in his spine before this would happen. Even then, we had been told there may be a need for radiation before the fluid was cleared. This has definitely been the first time we smiled this week. Tyler was so scared to get his spinal. Even though he has had more spinals than I can count he was shaking like a leaf on the gurney. He just doesn't trust anyone and who can blame him. I swore to him that he would be asleep through the whole thing and that I always tell him the truth about what will happen during his tests but he was petrified. Needles are the thing he hates most about his treatment and I have never allowed them to do spinals or aspirates without general anesthesia but he is so afraid he will wake up or they will begin before he is asleep. While Michael and I were waiting for the test to end I happened to notice on the board they had his name with "BMA" written next to it. This stands for Bonne Marrow Aspiate and I grabbed the nurse and made her go into the procedure room to be sure they were doing the right test. I would have freaked had they not gotten it right. They were doing the right test and someone had just written the wrong thing on the board. They erased it and apologized. And some of you wonder why I don't sleep at night?? Tyler has been nauseous off and on and has some bone pain but my biggest concern right now is his depression. He seemed a little brighter this morning. It has been hectic and even though I was up, I just didn't get out to the nurse's station to update last night. Tyler finishes his IV chemo Sunday and I hope things calm down a bit. He continues to spike fevers and they continue to culture him (take blood to look for an infection) and so far, all cultures are negative. His one chemo can cause fevers and for right now I think that is what the cause is. His counts are pretty much down to nothing and he received his first platelet transfusion yesterday. I am sure we will eventually get a real infection, this is just par for the course when the immune system is non existent. However, the longer we go without one, the better. Thanks to everyone who signs in. I read the posts to Tyler all the time and he enjoys hearing them. For those that have asked, Tyler is very good on the PC [much better than Dad :-)] but can't answer emails directly. For one, we don't have easy access to the internet. For another, he is not up to it yet. But know he really appreciates your messages on this site. They did start a new thing at CHOP, apparently you can send "e-cards" through CHOP's website. I haven't had time to search their site myself yet but, the nurse brought one in to Tyler yesterday. Also, once again, thanks to everyone for all the calls, prayers, etc. Please know that they are appreciated. We just have been too overwhelmed at this point to respond directly. That is one of the reasons this site is such a godsend. It gives us a means to communicate to everyone at one time and also receive your messages. Love to all, Noel

Friday, October 18, 2002 at 03:49 AM (CDT)

Sorry not to have updated for a few days but I know you all understand. I guess I'll start with Tuesday. They came and got us for Tyler's surgery at 7:30. Tyler had his broviac placed back in, had a spinal tap, bone marrow aspirate and 3 doses of chemo in his spine. We got back to our room (actually closet at that point) around 11:00am. Tyler really didn't wake up until Wednesday. The short times he did awake, he was incoherent. Throughout Tuesday night he had bouts of nausea. We received the results of his tests and that was not as positive as we had hoped. Tyler's spinal fluid showed Leukemia (CNS involvement). He did not have Leukemia in his spinal fluid during our last bout. This means Tyler will need spinal taps twice weekly, receiving mega doses of chemo directly in his spine until this also clears (God willing). It is just one more hurdle we'll have to do. Tuesday at 11:00 pm they started his Chemo via his broviac. We also moved into our room. Wednesday, Tyler was awake more. He had small bouts of nausea throughout the day/night. He also has some bone pain, mostly in his back and hip. Thursday was alittle better. He was awake more but, he is very quiet and stares alot. He says he is ok and does not want to talk but, I know he is very sad. I can see it in his eyes. He won't tell me what he is thinking. Friday, Tyler is scheduled for his second spinal tap/chemo at nine am. We need to see the Leukemia in his spinal fluid begin to diminish. He is still receiving his other chemos and will finish those Sunday night. His counts (WBC, platelets, HgB,etc) are dropping as expected and of course his immune system will be compromised for a number of weeks. He probably will get platelets (a blood product) on Friday. When the platelets are low this causes nose bleeds, excessive bruising, things along that nature. Everyone is asking what the gameplan is and I'll list it here but, really we take it day by day. We know from experience that anything can put a glitch in this and lead to a different course of action. Basically we need to see the Leukemia clear from Tyler's spinal fluid and bone marrow. His body will need to build back up (WBC, platelets, ANC,etc) which normally takes 4/6 weeks. If all that goes as planned, we'll start another round of chemo exactly the same as this one. Again the body will need to rebuild after that round. In the meantime, they are searching for a bone marrow donor for Tyler. If one is found, he will have a bone marrow transplant after the second round of chemo. That is it in a nutshell for now. I want to thank everyone for their calls, emails, prayers and gifts. Honestly we are still shell shocked, numb and overwhelmed at this point. I know people are asking about how to become a donor. I have not had any time to look into this and my access to the internet is limited at this point. I know that my sister-in-law, Chris, and my girlfriend at work, Sherri (thank you guys) are checking into this for us. I will update with the results of today's spinal (most of you know me by now and that it won't be until about 3 or 4 am). Although I do have to admit that I have some personal issues with the big guy right now, please pray for us to get some good news related to the spinal tap. We could use some at this point.

Tuesday, October 15, 2002 at 03:05 AM (CDT)

Tyler has relapsed. I thought for a long time today how to say that but, it doesn't really matter, the results are the same. Obviously, on one hand this was completely out of the blue. Everyone knows that Tyler has felt fantastic and looked extremely well. I have to say that Sunday night, I got a terrible feeling that I could not shake. I don't know why. I intentionally went in to lay in bed and sleep with Tyler in the middle of the night. We are devastated. I feel like I am in a terrible nightmare and just want to wake up. Tyler is asleep as I write this and doing surprisingly well. He fell apart when he was told but, bounced back much quicker than I would have ever thought. He is scheduled to get his broviac back in tomorrow (or actually today looking at the time) at 8am. He will have a bone marrow aspirate and intra-thecal chemo (a dose in his spine). He then begins chemo Tuesday afternoon. We will be in the hospital for the better part of five weeks. Tyler will need a bone marrow transplant and since his brother does not match, he is on the waiting list for donor. We hope they find one soon. Please pray for us

Thursday, October 10, 2002 at 06:11 PM (CDT)

The Light the Night Walk was a success. We all had a great time and raised $4250 to help cure Leukemia/Lymphoma! Thank you to everyone who was a team member or donated. We really appreciated it. The Philly skyline is really quite beautiful looking at it from over on the Jersey side. I never realized how pretty it is at night. The event was a lot of fun. There was a band and various mascots (Swoop from the Eagles, Scooby Doo, the Rivershark's Hammerhead). The kids all ran around and had a good time. We will happily do it again next year. Tyler is doing great. We have our big clinic visit on Monday and Tyler is not looking forward to the tests associated with our annual anniversary of being in remission. On a positive note, we are happy about the year anniversary. One down, four to go!! Tyler is looking forward to Halloween. Not sure if I had mentioned it before but, he is going to be the Green Goblin. School is keeping us busy. He has had two projects already and it is only the beginning of October. Michael likes Ryan and is doing well. Have a good week!

Friday, October 04, 2002 at 03:27 AM (CDT)

Hi Guys, Sorry not to have updated in a while. Things are going fine so there is not much to say for one thing. Tyler is doing great, enjoys school and feels healthy and well. For another, we've been busy working on the "Light the Night Walk" of which Tyler has a team. We raised over $3000.00 so far and we have one friend who has over another $1000.00 to turn in! I am amazed at the totals for our first year! Thank you to everyone who donated and/or will be walking with us this Saturday. We are really looking forward to it. Hope the weather holds out for us. Our buddy Connor has a team also so it should be a fun evening. Let's pray that they find a cure this year. We go to clinic on the 14th and get our yearly tests. We have the CHOP Halloween party coming up and a trip to Sesame Place for Halloween also. Aunt Cara stopped by with new baby Sean and Tyler just loves holding and feeding him. He's not big on the throw up or poopy diaper aspect. He was quick to pass him back to me when one of those happened, thanks Tyler. Well, have a good week and I'll update after our walk.

Monday, September 16, 2002 at 04:43 PM (CDT)

We had clinic today and all went well. Tyler's counts are great, WBC 5.3, HGB 14.0, platelets are 218 and ANC is 2385! Next month we are scheduled to get our annual EKG and echo of the heart. I also have to make an appointment to see the CHOP dentist. School is going well for both boys and they are getting back in the swing of getting up and doing homework. CHOP's annual halloween party is next month on the 27th and Tyler had such fun last year, we're going to go again this year. While we were at clinic we saw some of the nurse's pictures from camp. Everyone said what a great time they had. The Light the Night rely is coming up on October 5th and we have team that will be participating. Tyler's team name is Tyler's Tanks for a Cure and we hope to raise money for Leukemia research. Dad closed the pool this weekend. We were sorry to say goodbye to summer, Tyler really enjoyed the pool this year. On Saturday we drove up to Aunt Cara and Uncle Brian's house to visit new cousin Sean. He is really cute and Tyler loved holding and feeding him.

Monday, September 09, 2002 at 10:04 PM (CDT)

Hi Everyone (and Peg), hope all is well. We've been very busy with the first days of school for the boys, parent/teacher meetings, wrapping books, etc. For those in the Montgomery county area, if you get the "Record", Tyler was on the front page of last Sunday's edition. It was an article on the Ronald McDonald camp titled "Courageous Kids" and had a picture of Tyler, his friend Matt and another boy playing kickball. We had no idea about the article so, I was quite surprised to go into work and have all my friends show me the paper. We have clinic next Monday and Tyler has been feeling very well. Tyler has a new cousin as his Aunt Cara gave birth to a healthy baby boy last Wednesday. We welcome Sean to the tribe. Coming up on our year anniversay of completing treatment (November first). The coming year will be alittle nerve wrecking as the relapse rate is high during this time. I'll breath alittle easier after we can get two years behind us. We bid everyone peace on the upcoming anniversay of a different sort for 9/11.

Saturday, August 24, 2002 at 07:13 PM (CDT)

***Check out new pictures in the photo album

Tyler's back from camp!! Dad and I picked him and Matt up at 8:30 a.m. Saturday morning. He said he had a great time and would like to go again next year so, we were really glad to hear that. He played golf, rode go-carts, made something in woodshop, did arts & crafts, swam, kyaked (sp?), went to a carnival and even did archery. Pretty busy week. They got up each day at 6:30 which is a big change for Tyler. His only complaint was that the food was "yucky" but, Tyler is a pretty picky eater so I'm not surprised about that. I think he has a little of Uncle Joe in him, he had very little wash for me when he came home. Seems he wore the same shirt all week (and it looked it!). We won't even discuss underwear ;). Needless to say a bath was one of his first stops once we got home. He came home with more stuff than he left with as the camp carnival had all sorts of toys the kids could win. We're glad to have him home again. I think his brother would have enjoyed another week of quiet though. Oh well, there's always next year.

Sunday, August 18, 2002 at 07:19 PM (CDT)

Tyler's off to camp! We left this morning to pick Matthew and his Mom up at their house and got to camp about 2:30. Camp is about three hours away, up past Scranton. Tyler and Matt seemed real excited and I was so proud. He picked out his bunk and gave me a hug and kiss and said goodbye without any hesitation. He bunks with about six others, Matt and three adult counselors. They said they have a busy week planned for them. I miss him already. It's so quiet without him here. We pick the boys up Saturday morning at 8:30a.m. We had a small scare last week. On Thursday Tyler ran a low grade fever most of the day and complained of a backache. He got up to 103* in the middle of the night. I called clinic on Friday morning and took him right down. His counts all came back fine and by then he seemed better and was fever free. His exam was fine and the doctor said he probably just had a virus. Other than that, last week was pretty uneventful. Hershey park Monday, shopping for school supplies on Tuesday and swimming in the pool on Wednesday.

Monday, August 12, 2002 at 11:07 PM (CDT)

We had our friends from CHOP over on Saturday. Connor and his family, Matthew and his family and Tyler G. and his family. It was a wonderful day. We had such a nice time and the kids really enjoyed spending time with each other. The families are truly a great bunch of people. I am so glad that we met them although I wish it had been under better circumstances. I'm on vacation again this week and we have some day trips planned for early in the week and maybe the shore for the later half. We went to Hershey park today. Fun, but very hot. Just now walked in the door. Tomorrow we go shopping for school supplies and clothes for the boys. Tyler is pretty much packed and ready to go for camp this Sunday. He is looking forward to it so I hope he lasts the whole week. I think he will really enjoy himself. Last night he brought up the hospital and his broviac and how much it bothered him. Not sure where that came from. Perhaps seeing all our friends. I try to play up the good times from the hospital when he does bring it up because I can't be certain he won't have to go back. He usually shuts down at this and says lets not talk about it. He gets very upset and tells me he NEVER wants to go back there again. I can't promise him that, I wish I could, so I let him change the subject. Hard to believe the first day of school will be here before we know it. Michael starts high school and Tyler second grade. I wish summer would last longer. It is so much more laid back without homework, lunches and stuff. Oh well, guess we need to try and enjoy these last few weeks of less stressful days.

Sunday, August 04, 2002 at 02:06 AM (CDT)

Hi all. Hope everyone is keeping cool in the heat! We went to the zoo this evening, a night provided to kids with cancer by the Eagles flight for Leukemia. It was really nice. The zoo was closed to the public, just open to our families. We took Aunt chrissy, Uncle Paul and cousins Colin and Jamie. The kids really seemed to enjoy themselves and we all had a good time. We met all of our buddies from CHOP there. It was so great to see all the kids looking so healthy! We've been getting in a lot of pool time with all the hot weather. Summer is flying by. All of our friends from the hospital are coming over for a BBQ next Saturday so we're really looking forward to spending some time with them and catching up. We go on vacation the following Monday and have some day trips planned and hope to get down the shore for a few days too. Once we get back, Tyler leaves for camp Ronald McDonald in the Poconos. We're pretty much booked weekend wise until after Labor day. It's hard to believe how quickly time flys.

Monday, July 22, 2002 at 10:14 PM (CDT)

Just a quick update on our clinic visit today...all went well. Tyler's levels continue to be fine and he's doing fine. This marks nine months off treatment for us. After clinic we went to bowling. Tyler joined a summer league for kids. He got his first strike today along with a few spares. He bowled a 94 today. He's actually better than I am. After bowling we went up to Matthew's house (Tyler's other AML buddy). He's staying over Matt's house tonight.I'll update later on in the week. Stay cool in the heat!

Friday, July 19, 2002 at 11:55 PM (CDT)

Hi All, hope everyone is well. There is really not a lot to update on. Which I guess is a good thing. I'm slow with updates since everything is going well. Thanks to God. I'm sure this is really boring for you to check. When I think about not writing, I can tell by the number of hits that folks are still checking so I guess I'll continue. It's far too early for us to think we're out of the woods and I can only hope that the day will never come that I would need to go back to the daily updates. I know that there are people who check the caringbridge sites from other cancer sites looking for hope. I know that, because I'm one of them. It is a good feeling to read the sites of the children who are doing well. For no other reason I guess we'll continue. I know how frustrating it can be to look for good news and not be able to find it. Over the past few months we have heard of too many of the children we met in the hospital that are struggling or past away. For all of those children and of course, Tyler, we are going to participate in the Leukemia Society's Light the Night event in October. It is a walk to help raise money to find a cure for cancer. If anyone wants to join our team or sponsor, let me know. Tyler goes back to clinic on Monday. He's been feeling great and enjoying the pool/summer. He still says he is going to go to the Ronald McDonald camp in August. I hope so as I'm sure he'll have a great time. I'll update again after clinic.

Tuesday, July 09, 2002 at 02:42 PM (CDT)

Hope everyone had a happy July 4th! We're actually on vacation this week. No trips planned this time around, just catching up on some home stuff and hanging by the pool. Tyler went to the family doc to see if he needed to catch up on any shots and happily for him, no. He was already up to date. He is looking and feeling great. Has a little color from the sun and he really looks healthy. We're going to visit a CHOP buddie, Matthew, on Thursday. We don't go back to clinic until the 22nd of this month.

Tuesday, June 25, 2002 at 08:36 PM (CDT)

Clinic went well yesterday. Tyler's labs were fine. Another month over, we're now eight months out of treatment. Tyler can now get caught up on the immunizations he missed last year. Fun, more shots, he's going to love that news when he finds out. It's still a good thing though. Little Mike has a bad case of poison ivy. He woke up with his eye swollen shut this morning. I took him to the doctors and he's now on two meds. Tyler spent the day in the pool.

Tuesday, June 18, 2002 at 09:02 PM (CDT)

Hi everyone, hope all are well. We're all fine here. Been a very busy week, sorry for the late entry. The kids finshed school last week, thank heavens that's done. It's so much easier during the week without homework,etc. Michael had his 8th grade dance last week, graduated on Wednesday and we had his party on Saturday. Everything went really well. I'm working longer longer hours during the week so that I can take advantage of the four day work week during the summer. Tyler has clinic on Monday. He's feeling really well and looks great. Tyler joined a summer bowling league and starts on Monday. We spoke to all of our AML buddies over the last week except for one and all are doing great. This is really good news to hear. We hope to have a BBQ over the summer and see them all. Maybe things won't be as hectic now that summer's here, ha!

Wednesday, June 05, 2002 at 04:42 PM (CDT)

We're all doing well. Tyler's birthday was Thursday and we went to the buffet. Tyler had his fill of crab legs and shrimp. Saturday we started out with other plans and it was so nice we worked on the yard in the morning while Tyler played in our pool for the first time in two summers. He had so much fun he really didn't want to leave so we changed plans and the four of us just stayed in the pool. It was his birthday weekend after all and it was nice to see him enjoy himself so much. We BBQ'd and had a quiet weekend but it was really nice. School is almost over for the kids. Tyler is down to 1/2 days, ending next Friday and Michael only has a handful of 1/2 days left, graduating next Wednesday. Tyler was invited to go to the Ronald McDonald camp for kids with cancer for a week in August (sleepover) and he says he wants to go. I'm surprised since it means not coming home, but we'll give it a try. It's three hours away so I hope I don't get a call that night to come pick him back up ;)

Tuesday, May 28, 2002 at 08:51 PM (CDT)

Clinic went well on Friday. All of Tyler's counts are still in the normal range. His WBC dropped alittle but not by alot. Didn't really do much this weekend. Just some errands and planting. We're still catching up from Disney. We did go to see the new Star Wars movie. Tyler enjoyed it. Star Wars has been his favorite thing for a while now. He collects the leggos and all. Hard to believe the kids only have a couple of weeks left for school. No swimming yet as the pool water is way too cold. Tyler's birthday is on Thursday! He wants to go to the Chinese buffet for dinner. Go figure. He likes their crab legs and shrimp.

Wednesday, May 22, 2002 at 09:08 PM (CDT)

Sorry for the lag time between updates. All is well. Just been busy trying to catch up from our vaca. The kids had quite a bit of homework to catch up on, so nights have been busy there. I broke a tooth in Disney and had to have some dental surgery to correct that and I've been feeling pretty miserable. Really haven't spent alot of time on the pc. Tyler has a clinic appointment on Friday. He looks and feels great so I expect an uneventful visit. We did get our pictures developed. Once I feel well enough to play with the scanner I'll put some pictures out there. Nothing much planned for the weekend except for trying to get the house back in shape. Tyler's birthday is coming up, yeah! He will be seven on May 30th. Michael graduates 8th grad on 6/12 so we'll probably just have a family gathering for the two of them at the same time. Hope everyone has a nice holiday weekend.

Thursday, May 09, 2002 at 12:19 PM (CDT)

Well, we're back! We had a wonderful time. Everything was great. The weather was in the mid nineties the whole time and it didn't rain once. We did so much, Disney, Seaworld, Universal, Kennedy Space Center. The give kids the world village where we stayed was the best. They thought of everything. In addition to having a movie theater and ice cream palace, they had two buildings that had games, pcs, trains and things to play with. At night there were activities for the kids and they had two really nice swimming pools. Each day they deliver gifts to the children and the disney characters come to the village to visit. One night was Christmas and Mr.& Mrs.Claus were there. They took our picture and gave the kids treats and even had a snow maker there. Kind of hard to make snow when it's 95 out but, they tried! The "mayor" of the village is a six foot rabbit named Mayor Clayton. He came and tucked Tyler into bed one night. Tyler was so excited. We moved to the Holiday Inn Family Suites on Sunday and spent the last two days relaxing by the pool. We had a great time. We need to get our pictures developed and I'll try to scan some in.

Sunday, April 28, 2002 at 07:42 PM (CDT)

Well the Griswalds do Disney! We leave tomorrow morning. The limo picks us up at 7am and our flight via US Airways leaves Philly at 9:55. We are all very excited. We'll be sure to update when we get back. I checked on line and the weather for Orlando is supposed to be 92* and partly sunny all week. Thanks for all the well wishes. Take care, Love, us

Monday, April 22, 2002 at 01:15 PM (CDT)

Great News!!! We had our best checkup to date! Praise God, everything is going so well. I never like to say to much (that old jinx thing) but, Tyler's counts were wonderful. All his labs including his WBC were perfectly normal. WBC-7.0; RBC-4.46; HGB-13.9; Platelets-215 and ANC-4004. Woohoo! This is the first time in probably over a yeat his WBC was well within the normal range. That's the white blood cell count that helps to fight infection. Dr. Leahey gave Tyler an eye exam and his sight is normal. She wasn't real concerned about the weird eye thing I mentioned last week. In fact, he hasn't done it lately. Tyler's dental checkup went well. While we were at clinic we received our Make A Wish package. They gave us our itinerary and airline tickets. They also had a surprise backpack filled with goodies for Tyler. Less than a week away now. I'll update once more before we go. Take care everyone. Love, us

Monday, April 22, 2002 at 01:15 PM (CDT)

Great News!!! We had our best checkup to date! Praise God, everything is going so well. I never like to say to much (that old jinx thing) but, Tyler's counts were wonderful. All his labs including his WBC were perfectly normal. WBC-7.0; RBC-4.46; HGB-13.9; Platelets-215 and ANC-4004. Woohoo! This is the first time in probably over a yeat his WBC was well within the normal range. That's the white blood cell count that helps to fight infection. Dr. Leahey gave Tyler an eye exam and his sight is normal. She wasn't real concerned about the weird eye thing I mentioned last week. In fact, he hasn't done it lately. Tyler's dental checkup went well. While we were at clinic we received our Make A Wish package. They gave us our itinerary and airline tickets. They also had a surprise backpack filled with goodies for Tyler. Less than a week away now. I'll update once more before we go. Take care everyone. Love, us

Sunday, April 14, 2002 at 10:01 PM (CDT)

Hi everyone. Hope you all are well. Well, three days to the one year anniversary of Tyler's diagnosis. That was certainly the worst day of my life. I am sooo glad our Disney trip is scheduled for 4/29. God works in mysterious ways. The trip being right at this time is giving us all something to be excited about and things to do. I couldn't have picked a better time and yet I really don't know if I would have had the foresight to know that. The boys got their reports cards on Friday. They both did excellent. Tyler got three "O's" (outstanding) and nine "VG's" (very good, the mark right below an "O"). In regular terms all A's and A+'s. We couldn't be prouder. Michael got an 82,86,87,88,89,91& 94. Again, we're very proud of the hard work he put in this report card. This weekend we went to the nursery and got our planting materials and Tyler and I started work on the garden. It felt so good to do that. I really missed that last year. It felt nice to do our normal spring routine. It was a great way to spend our weekend. Dad took the cover off the pool to see what kind of mess we had there (since it hadn't been opened in a year and a half). Thankfully, it looks pretty good. The liner looks like it held and the water is surprisingly decent. We'll try to officially open it in the next few weeks. We were a little worried about what we would find. We put up a retractable awning over the patio this weekend. Tyler needs a place to go for a break from the sun when we're out back. We go to clinic next Monday on the 22nd and while we're there we go to CHOP's dental clinic for a checkup too. Tyler seems well and looks good so I'm feeling pretty good about that. I guess as well as I'll ever feel about clinic. He does have some weird eye thing I want them to check out. Every once in a while he blinks real hard, like he's trying to clear his vision. He doesn't even know we noticed him doing it. I know some of the Chemo Tyler had has effects on the eyes so I'll be sure to have them check it out. We may need to add glasses to the major dental work in this kid's future. Have a good week!

Saturday, April 06, 2002 at 01:57 PM (CST)

Tyler's looking and feeling great. Allergies are kicking in a bit but, that's part of spring. He looks so good to me anymore. The one year anniversary of Tyler's diagnosis is fast approaching and we have mixed feelings about that. We switched our closets around for summer and while at it, the kids and I packed for Disney. Michael thought we were crazy of course, just a bit overanxious I guess. Next clinic appointment is in three weeks and I made an appointment at CHOP's dental clinic for the same day. Tyler's not thrilled about dentists after the bad experience he had last year. Can't say I blame him since his previous dentist treated him for gum infections and pulled teeth and did root canals when it was the leukemia the whole time. He really messed up Tyler's mouth. That boy has a long future of orthodontia ahead of him. Have a good week!

Thursday, March 28, 2002 at 04:18 PM (CST)

Great news again, Thank God. Everything went well at clinic. Tyler is doing fine and feeling well. He got to play with some of his friends at clinic. Here's to wishing everyone a happy healthy Easter. It is a milestone for us as we approach Tyler's one year diagnosis on 4/17. We're spending a quiet Easter Sunday at home this year. Last year Tyler was admitted the Tuesday after Easter and he was not up to egg hunting or anything. This year he is dyeing eggs with all of his cousins on Saturday night and we will enjoy the celebration. We are officially off treatment 5 months on 4/1. In a way it seems like so much longer. Five months is really nothing in the big picture but each month that passes is a good thing. Our next clinic visit is scheduled for 4/22 right before we leave for Disney. Wishing everyone peace.

Saturday, March 23, 2002 at 12:56 AM (CST)

Hi everyone! Just doing a weekly update. Tyler's feeling well. We did get to the movies last weekend to see Ice Age. We all really enjoyed it. Highly recommend it, especially if you have kids. Things have settled down a bit here, doctor visit wise. Thankfully, none of the visits were for Tyler but for big Michael and I. Won't bore you with the details, suffice to say we're all fine and hopefully done with all the running around. We went to a Phantoms hockey game tonight. Tyler thoroughly enjoyed it. He really loves sports, especially hockey, as I'm sure most of you know :-) It was great to see him enjoy himself so much. A friend of mine just returned from visiting her family down in Florida and my cousin just returned from a trip to Disney. They both brought back tons of brochures and the kids had fun plotting out their courses for our trip. We go to clinic this Thursday so please pray for continued good results. Hope you all are well.

Wednesday, March 13, 2002 at 11:45 PM (CST)

Hi all, hope all is well with everyone. Tyler's cold seems gone (shh, we don't want to jinx ourselves). Everyone is well here at the moment. Tyler is feeling good and doing great in school. Little Mike is doing pretty well in school also. While it is still a tough time of year for us right now, we have received good news over the last few weeks to help lift our spirits. As most of you probably know, Mike's sister, Cara, is expecting (yeah!), Connor our friend from CHOP became a big brother to twins and is doing well also and of course, Disney is only a short time away. So far, 2002 is far better than 2001. We hope to get to the movies this weekend, Tyler really wants to see Ice Age. Wishing you all peace and health!

Thursday, March 07, 2002 at 06:18 PM (CST)

I'd like to say that Tyler is all through with his cold but, unfortunately it looks like it's not over yet. He did get better for a couple of days and then started with a head cold on Wednesday. This one is a little different then the one he just got over. I'm sure this is just a cold too and both his brother and I were stuffy ourselves. Plus Tyler's white blood cell count is still low so he is susceptable to colds very easily. He stayed home from school today and we're going to play this one out for a few days. I still have cough/nose medicine left from last week anyway. Other than that, he is feeling well. His energy level is good and he doesn't have a fever or any backaches, etc. Bring on Spring so we can open the windows and clear out the germs! We did get some more information from the Make A Wish folks. We're officially going from 4/29 and returning 5/8. A limo will pick us up to take us to the airport and then be there to bring us home from the airport. Can't wait, the way time flies, it should be here before we know it.

Saturday, March 02, 2002 at 08:52 PM (CST)

Tyler's doing much better. Thank God, it must have been a cold. Just a few days after the antibiotic and he really seems like himself again. The rash never appeared again. Tyler got his hair cut for the first time since last year, it looks really cute. We haven't heard any more news about Disney yet. We go back to clinic on March 28th.

Tuesday, February 26, 2002 at 12:40 AM (CST)

Sorry I didn't get a chance to update last week. Tyler was complaining of back pain on Wednesday (bone pain is NOT a good sign) and came home sick on Thursday. I felt so bad for him, he stayed in school all day even though he didn't feel good. He was afraid to go to the nurse because he was afraid I would take him back down to the hospital. He was running a low grade fever when I took him to the doctor's office on Friday. Dr. Wohl said his throat was red and treated him with an antibiotic. I was pretty sure it was just a cold too but, on Friday night he developed a rash that looked exactly like the one he had when he was first diagnosed. It took them a long time to decide on the cause of the rash back then and they finally chalked it up to a severe allergy to penicillan but they could never be sure. I remember his oncologist saying that it actually may have been related to the leukemia. Needless to say, I was very worried all weekend. The rash disappeared by Saturday morning and Tyler started to feel better. By Sunday he seemed much better and today he seems pretty much back to normal. His white blood cell count was a little low so he is still prone to getting colds and infections but it is very worrisome whenever he has symptoms.Tyler got a letter in the mail today from the Make A Wish people! We're scheduled to go on April 29th. That's all the letter said, they stated we'll get another packet soon with more details.

Friday February 15, 2002 8:03 PM CST

We had our clinic visit yesterday and the results were all good. We were very relived to hear the results. Both Michael and I had been very apprehensive the last couple of weeks, I can't really say why. Just the little things like being tired or some bruising, which obviously can be totally normal can lead us to worry a great deal.It is coming up on the year anniversary of Tyler's diagnosis and I think that alone is causing us to worry about the smallest of things. This time last year is when Tyler started to get sick. He was so sick on Easter, we didn't even celebrate the holiday. He was too sick to dye eggs and just laid on the couch. I remember him asking me, "Mom, am I ever going to feel better?". We were constantly at the doctors in March trying to figure out what was wrong and just after the second weekend in April, Tyler was diagnosed and admitted to CHOP. I think that subconciously this is what was bothering Michael and I. I guess the next couple of months will be more stressful when it comes to clinic time. This time of year doesn't hold alot of pleasant memories right now. While we were at clinic Tyler met with the Make A Wish people. He made his wish for Disney World and they said we should hear in the next couple of weeks if it is all approved. It looks as though we should be able to go sometime in May. We're all looking forward to getting away and relaxing as a family. Getting ready for the trip will be a nice diversion from thinking about last year too. Both little Michael and Tyler are excited about going. We've heard great things about the trip from other parents who have went through the Make a Wish organization. If you would like to check out where we would be staying, visit the site at www.gktw.com.

Friday February 8, 2002 10:04 PM CST

Another week has gone by, they seem to be going so fast. We've been busy this week, Grandmom turns 80 on Saturday and we're having her over for dinner. We've had alot of errands this week and Tyler seemed a little tired. I'll be glad to go to clinic on the 14th to see our results for this month. Other than that Tyler is well. Doesn't look like we're going to get much snow time in this year. Oh well, we're looking forward to summer anyway. Tyler really missed the pool and is hoping to get to the beach this year and play in the sand. He wasn't able to do either last summer. I'll update after our visit on Thursday. Pray for good results!

Friday February 1, 2002 8:35 PM CST

Tyler brought home his report card today. We're so proud of him! He got all VG's and O's. In first grade they don't use the normal A,B,C type of grading. O is for outstanding and VG is for very good. Plus he received all +'s indicating strengths in many areas. I spoke to his teacher on the phone and she told me how great he's doing and how pleased and surprised she was at his progress. She had initially thought he might have had some trouble since he had missed the first month of school. There is no sign of that what so ever. Tyler is looking and feeling well. The family is doing fine and Michael did well on his report card. We heard from the Make A Wish people. Tyler is going to be interviewed at our next clinic visit and then they'll complete the paperwork. We go to clinic next on the 14th. Pray for continued good news.

Thursday January 24, 2002 9:26 PM CST

Just a weekly update, Tyler enjoyed the snow. I know he wished it hung around alittle longer but, he still got to build a snowman and have a few snowball fights with his Dad and I. He helped us shovel the sidewalks and our neighbor even "tipped" him for the good job he did. Tyler looks well and is feeling great. School is going very well as it has been all along. He loves school and his grades are wonderful. We haven't heard anymore about his make a wish yet. We did talk about some of the camps that they have during the summer for kids with cancer and he is very interested in going to one. We'll have to look into this more as spring gets closer. Our next clinic visit is on February 14th.

Thursday January 17, 2002 12:31 AM CST

We went to clinic today and made out well. All of Tyler's levels are well within the normal range. Dr. Leahy said Tyler looked great and was pleased with everything so far. So, another month out of the way. Tyler is doing great in school, we get report cards next week. Everything is going well at home. The kids are hoping for some snow so they can go out and play. We ran into two of our fellow AML buddies at clinic (Alyssa and Brian). They looked good and are recovering from their transplants. We have Connor's third birthday party to go to in February and it will be nice to see him and his family. We also ran into Tyler's primary nurse, Meredith at clinic. It was nice to see her outside of the third floor. We miss the nurses, they were all so nice. Tyler doesn't ever want to stop back on the floor to visit though so we don't run into them too often. I can't blame him though. I'm sure he wants to forget about most of that time. Well, I'll update again next week. Take care and keep Tyler in your prayers.

Thursday, January 10, 2002 at 10:02 PM (CST)

Just a weekly update, everything seems well. We all are fine and living our normal busy lives. Amazing how quickly you can can back to normal after such a life changing event. Well, I guess mostly normal. Michael and I always have that little nagging doubt there about letting ourselves feel totally normal. Plus the monthly visits have mixed emotions. While part of me wants to go for the reassurance that all is truly well, it still serves as a reminder of all we went through and the fact that our lives are still very much out of our control. Luckily Tyler as none of these feelings and is totally fine with everything. He's so good about everything. When I think back about all he went through, he really is such a trooper. Never complained, just endured it all and shows no sign at all of any emotional, mental or physical problems (thank God). He's a very special boy. We talked to the social worker about Tyler's Make a Wish. They are going to start the paperwork. We are thinking about going in May. Tyler's wish is for Disney World. We go back to clinic for our monthly check next Thursday. Please say a prayer for Tyler's continued good health.

Thursday, January 03, 2002 at 09:19 PM (CST)

Well, 2001 is over. Thank heavens! Hope everyone had a nice holiday. We're all back to work and school now. Trying to get back in the swing of things after a nice long vacation. Tyler is looking really good. Little Michael and I were fighting slight colds and a lot of the people we saw over the holidays seemed to be doing the same. So far Tyler has not caught anything and appears healthier than ever. We go back to clinic on 1/17 for our next monthly check.

Friday, December 28, 2001 at 11:37 PM (CST)

It's hard to believe that a week has gone by already since I updated. We had a truly wonderful Christmas and hope all of you did also. Christmas Eve was great having family and friends over and Christmas day was relaxing and fun. The kids were very happy with all of their presents and we just had our family polyanna dinner tonight. We couldn't have asked for a better holiday season, everything has been so nice. Still a lot going on with cousin Colin's birthday tomorrow night and cousin RJ's birthday Monday night. Tyler went to stay over his grandmom's house Thursday night and enjoyed himself. He's really had so much fun this past week. We're looking forward to saying goodbye to 2001. Thanks again to everyone for all of your thoughts and prayers. Enjoy the rest of your holiday and have a happy and healthy New Year.

Thursday, December 20, 2001 at 12:18 PM (CST)

We had our clinic visit today and received a clean bill of health! What a wonderful Christmas present. Tyler's lab results were all completely normal and his echo of the heart came back fine. He saw Santa in clinic and Santa gave him a present, Leggos, one of Tyler's favorites. He also got a present from the nurses, a pokemon, another favorite. Now that we know the results we can fully enjoy the holidays. Tyler is really looking forward to Christmas and has a number of plans lined up. His Aunt Cara and Uncle Brian take all the cousins over the upcoming weekend (god bless them!) and two of his cousins are having birthdays and sleepover parties the following weekend so he will be a busy little boy. We wish everyone a happy and HEALTHY holiday and New Year. Let's hope 2002 is better for all of us. We hope to see everyone over the holidays and remember we have an open house on Christmas Eve so everyone is welcome. We have much to celebrate. God Bless, all of us here in the Robbins household.

Saturday, December 15, 2001 at 02:16 AM (CST)

Tyler's cold was much better by Tuesday and he seems completely better now. We've been so busy lately as I'm sure everyone is, trying to get ready for the holidays. We go to clinic on Thursday for an baseline echo of Tyler's heart and lab work to ensure that he remains in remission. So please continue to pray for good results. The echo is just a normal check to make sure there is no heart damage from the intensive Chemo Tyler received during treatment.

Saturday, December 08, 2001 at 09:46 PM (CST)

Tyler has cold and went to the doctor's this morning. He has had a cough and runny nose for a couple of days and woke up this morning with an earache. He got an antibiotic and cough medicine so hopefully in a few days the cold will be gone. It hasn't slowed him down any and other then the normal cold symptoms he's been fine. We went and saw Christmas lights at Shady Brook Farm during the week and hope to get our tree tomorrow.

Tuesday, December 04, 2001 at 12:20 AM (CST)

All is well here. We went to Peddler's Village with Uncle Rob, Aunt Sandi and "baby" Tyler to see the Christmas lights and shop. Tyler and little Tyler had alot of fun running around and looking at the lights. We are going to see more lights on Thursday night at Shady Brook Farm. Been busy decorating for Christmas. Tyler goes back to clinic for his monthly visit on 12/20 so no news to report on that yet. He seems fine and healthy so we are hoping for a good report on the 20th.

Tuesday, November 27, 2001 at 09:02 PM (CST)

I took Tyler up the mall tonight to see Santa. It was late on a Tuesday night so I figured the mall wouldn't be crowded. We really don't want him around large groups of people, especially strangers with colds! I was right, the mall was empty. Tyler was able to walk right up and talk to Santa. He was really excited about seeing him for some reason this year. He got a nice picture and told him a few things on his list. I was able to finish my shopping over the weekend and Michael wrapped so we're done! I wanted to get it over with in case we end up back in the hospital for a cold or something. At least this way it's done and out of the way. Tyler's busy with school now that the Thanksgiving weekend is over. He got his report card right before the break. They don't give A's or B's in first grade on tests at his school, they give O's for outstanding, VG's for very good, G's for good, etc. He's got all O's and VG's and his report card looked great.

Saturday, November 24, 2001 at 05:10 PM (CST)

Things are going fine here. We've seen so many people over the holiday, that's why I haven't updated. We had a nice Thanksgiving with Mommom, Aunt Shirley, Aunt Angie, cousin Ryan and Dawn. Friday was Michael's 13th birthday and he had some friends stay over. They went to dinner and a movie first. Tonight we are having his aunts and uncles over for cake and ice cream. Getting ready for Christmas. Trying to get some shopping done and we'll decorate soon. Tyler is his old self, being a pain in the neck to his brother and playing with his toys. He's getting excited about Christmas coming.

Thursday, November 15, 2001 at 11:01 AM (CST)

We went to clinic today. All is well. I don't have Tyler's lab results yet, they are going to call me later. They drew blood and Tyler did great through the whole thing. He really takes it well. Even though they had to try twice to get enough blood. Good thing he is used to it I guess. His counts were so well last time that they gave him a flu shot today too. Now the whole family has got theirs. I hope he doesn't get sick from it. We don't have to go back until 12/20. We are now on a monthly schedule. On the next visit they will do an echo of Tyler's heart just to check for any heart damage from the Chemo.

Sunday, November 11, 2001 at 12:58 PM (CST)

The family is finally starting to feel a little better. Tyler is almost completely back to normal, just the slightest remains of a cough. He stayed over grandmom's house Saturday night. He was so excited! This was the first time in a long time since he had either been in the hospital or had his tubies. He's really been enjoying bath time too. He can't wait to go in a pool he told me. We go to clinic on Thursday for a checkup. That's about it for now.

Thursday, November 08, 2001 at 07:05 AM (CST)

I haven't updated in a few days as the whole house has been so sick. I guess that's what's Tyler's fever was. Dr. Reingold had said he might show the cold symptoms after we left the hospital and he did on Monday. Just a stuffy head and cough. Tyler stayed home from school on Tuesday and Wednesday but he is feeling much better now and he never ran another fever. I have it pretty bad though and now Dad has started.
It was so nice to read the entries from Ellen and Kristen! We miss you guys!

Sunday, November 04, 2001 at 02:04 PM (CST)

Well, we had an eventful weekend. Tyler had a headache on Friday as we expected from his Chemo on Thursday and his back was sore but late in the afternoon he started to look flushed and by early evening he was running a fever of around 102. I called the oncologist and they had us come in to emergency. He was admitted and started on IV antibiotics. We were in all weekend and released Sunday. Any time Tyler runs a fever we will be admitted for the next few months. It was such a shame, he just had his broviac out so, he had to get a line put in in his arm. They had trouble getting the line in and he had to be stuck three times before it worked. Then, when they take blood, he needed to be stuck again. Those tubies really came in handy. His blood cultures came back negative thank heavens so he didn't have a serious infection and he never ran another fever that's why they let us come home today. He's feeling better and his counts are great. Hopefully, it was just a slight virus.

Thursday, November 01, 2001 at 11:07 PM (CST)

Well, let's try this again. I had updated the page earlier this evening but when I just checked, I see that the entry didn't take. Hopefully, you won't see today's info twice. We went to clinic today and had labs drawn, Ty's counts are: WBC 3.1, stable; his platelets are 194K, normal; Hgb 12.1, normal; his ANC is 1457, up from last week but obviously still very low. However, this is very good. We had a long day but eventually Tyler had his last dose of Chemo, spinal tap, bone marrow aspirate and they took out his broviac!!! The best news of all came when we got home, Dr. Langmuir called to let us know that Tyler's marrow is clear of Leukemia cells and "looks wonderful"! We are extremely happy. Tyler has been free of Leukemia since his aspirate at the end of round one but it was of course, very important to still be clear now. This means today will be the anniversary date for remission. Tyler is doing well. A little sore where the broviac came out and his back is also a little sore but we're going to take it easy for the next few days. It is very strange to see his chest without his "tubies", his neck smooth without the feel of a line and not have to flush him or pin up his lines. It is a nice feeling to be done with treatment! He is my angel and my hero for all he has been through and put up with. By the way, Halloween was great. Tyler dressed as a ninja and went out with his cousins. We all had a very nice time.

Thursday, November 01, 2001 at 05:51 PM (CST)

Today is officially Tyler's anniversary for completion of treatment. Tyler's bone marrow is still completely free of Leukemia cells! He has been clear since the end of round one, but it is important to know that he is still clear at the end of treatment. They gave Tyler his last dose of Chemo, did a spinal and bone marrow aspirate and took out his broviac!!!! By the time we got home, Dr. Langmuir called to give us the good news. It is strange to see his chest tubie free and to not have to worry about flushing and pinning up his lines. I'm sure bath time will be a nice change. Tyler will be able to swim and get all wet and not worry about keeping his chest dry. Tyler is feeling well and does not seem any worse for wear. His chest is a little sore, as is his back. It was a long day but we're glad to be home. We're going to take it easy for the next couple of days. By the way, Tyler had a great Halloween. He went out with his cousins dressed as a ninja.

Monday, October 29, 2001 at 07:28 PM (CST)

Not much going on on the home front. Tyler is doing well although a little clutzy. We saw Bernie Parent at the Acme of all places and he got an autographed puck. Well he was playing with that and smacked himself in the eye. He's fine but he has a black eye now. That should go over well at clinic. On Sunday we went to Matthew Blair's house for a Halloween party. Matt is one of Tyler's AML buddies from CHOP. We had a great time. The kids played and painted pumpkins and went for a spooky walk in the woods behind Matt's house. We're getting ready for trick or treating. Tyler is going to be a ninja. I'll update on Thursday after our big day at clinic. Pray that Tyler's bone marrow aspirate comes out clear of Leukemia and all goes well with the broviac removal.

Thursday, October 25, 2001 at 11:08 AM (CDT)

We had clinic today and all of Tyler's counts are real good. His ANC is 961, not much of a drop since last week's Chemo. His Hgb is 12.3, normal; his platekets are 172, normal and his WBC is 3.1. He had his second out-patient Chemo and did well. We go back next Thursday for his last Chemo, his spinal tap, bone marrow aspirate and they will take out his broviac. If the bone marrow comes back clear, November first will be a new birthday of sorts for Tyler. That will be the anniversary date we will use each year to count off the years of remission. Once we get to two years, the chance of relapse greatly decreases and at five years Tyler is considered cured. Needless to say, this will be a very important date for us each year. Look for a very big party on 11/1/06! By the way, check out the new picture we added of Tyler and his hospital buddies. Click on the camera icon below to see the picture.

Sunday, October 21, 2001 at 03:17 PM (CDT)

Tyler's doing great. We went to the CHOP sponsored Halloween party today. It was down at the Embassy Suites by the airport. It was really nice. They had lots of prizes and the Phanatic and some Phillies were there. They had burgers, dogs and chicken fingers, face painting and games. Tyler went in his Halloween costume, a Ninja. He had alot of fun. Both channel 3 and Fox news were there but I don't think we made it on T.V. I'll update on Thursday after we return from clinic.

Thursday, October 18, 2001 at 01:08 PM (CDT)

Wow, can you say healthy counts! Tyler's Hgb (hemogoblin) is 11.6 which is totally normal. His platelets were 142, low normal. His ANC was 1680! He got his first out-patient Chemo and spinal tap. This is great news. This means he'll get another next week. The week after that, his last along with a bone marrow aspirate and they will take out his broviac. We are almost done treatment! We are so happy. Of course he looks great and feels fine. Keep those prayers going. We can alomost see the light at the end of the tunnel. We're looking forward to the upcoming holidays and some time away from the hospital.

Wednesday, October 17, 2001 at 10:02 PM (CDT)

Things are going well here. Everyone is back to the old grind, going to school or work, homework at night, packing lunches, etc. We go to clinic tomorrow. Hopefully, Tyler's counts will be high enough to allow them to give him the first of the last doses of chemo. He looks good and feels well. We have a Halloween party to go to this Sunday given by CHOP. Alot of Tyler's hospital buddies should be there for him to play with.

Monday, October 15, 2001 at 07:51 AM (CDT)

On Saturday Tyler and I and Aunt Chrissy and Jamie and Colin went to Sesame Place. Tyler had a great time. They had trick or treating and a hay ride and we saw all the shows. He really enjoyed himself. He had been looking forward to going all summer. He kept saying as soon as I'm out of the hospital I want to go to Sesame Place. On Saturday night we had Connor and his family over for dinner. Tyler was so excited to see them. It was so nice to see the kids be able to play without the hospital environment. We had a such a nice time. Sunday was kind of laid back. Uncle Rob and Aunt Sandi came over along with friends of ours, Al and Anne. I go back to work on Tuesday so we're starting to get back to "normal". We go to clinic again on Thursday. Hopefully, we'll be able to start the last three Chemos and then get his broviac out. Tyler's feeling well and had tons of energy on Saturday so that makes us feel good.

Friday, October 12, 2001 at 10:12 PM (CDT)

Sorry not to have updated yesterday. Got tied up with some errands. We went to clinic and Tyler's platelets were great. They went up to 96 on their own. This meant no platelet transfusion needed. This was especially good news since Tyler usually is slow in regaining his platelets. His Hgb was low at 10.0 but not requiring a whole blood transfusion and also holding stable. His ANC however dropped. It went down to 340. Therefore, we could not begin the last round of out-patient Chemo. Dr. Langmuir was not concerned and was happy with the way Tyler looks and feels (both great). He said it was not unusual to have the ANC fluctuate like this after round three and since all the other labs were stable or improving, we would just wait it out a little longer. We're fine with that, not that we have a choice :-). All it means is a little longer before we are officially done treatment and before Tyler's broviac can come out. We are still hoping to be completely done by Thanksgiving. Tyler is enjoying school and life at home. He even enjoys going to clinic and seeing his friends so, all is well here. We are going to Sesame Place tomorrow. Kind of spur of the moment since the weather has been so nice. Tyler is real excited.

Monday, October 08, 2001 at 09:11 PM (CDT)

Tyler had a GREAT day at school. He was not a bit nervous going and was up and ready bright and early. He couldn't wait to see everyone. His class gathered all around him when he got there to show him his desk and the pictures they had made for him. When I picked him up he must have told me he loves school five times. He is so happy to be back. He did wonderful and his teacher told me he was right on target with his class. Raising his hand the whole day and fitting right in. Surprisingly, he wasn't tired when he got home. He went to bed about 9:30. I thought for sure he would be pooped after his first day back.

Sunday, October 07, 2001 at 11:39 PM (CDT)

Tyler had a good weekend. He worked on the last of his homework to bring him up to date with school and got his book bag all ready. He's very excited about going to school for the first time. In fact, he is disappointed that he has to miss on Thursday for clinic. He told me he really loves school. He's feeling well and looks good. I'm so happy for him. He's getting excited about Halloween also. He picked out his costume, he's going to be a ninja. It's not so much the outfit I think but, the sword he likes so much.

Thursday, October 04, 2001 at 10:21 AM (CDT)

All went well at clinic today. Tyler didn't need platelets (his level was 40, real low but not requiring a transfusion) or blood (Hgb was 10.2). His ANC was 420. This was too low to start the first spinal/Chemo but it is high enough for him to go to school on Monday! He had alot of segs and monocytes which means his counts are on the rise. He will probably be able to start his Chemo next Thursday. He looks well and has his color back. He's excited about going to school and seeing his friends.

Wednesday, October 03, 2001 at 09:48 PM (CDT)

Tyler is still doing real well. He doesn't look as pale to me. We go to clinic tomorrow morning to get labs and we'll see if he needs any blood or platelets. If his counts are at least 800 they will do the first spinal tap with Chemo. We will also find out when he can return to school. It's hard to say, by looking at him I think his counts must be up there but then again he has looked this good all throughout the third round. Even when he was getting Chemo and they had told us this Chemo makes "the kids feel really awful". I'll update tomorrow with the results.

Monday, October 01, 2001 at 01:04 AM (CDT)

Tyler is doing well. He looks alittle pale to me but other than that he seems fine. He is hoping to get back to school next week. We'll have to wait until Thursday to see what the doctors say. We really haven't done anything since we've been home. With Tyler's counts being so low, he can't really be out and about. He's still so happy to be here though. He plays with his toys and watches t.v. I got him some movies and video games from blockbuster so that's been keeping him busy. We made cookies yesterday and he is getting very good at Legos.

Thursday, September 27, 2001 at 10:08 PM (CDT)

We had clinic today. Tyler's doctor told me how pleased he was with how well Tyler is doing. He had not seen us when we had been released on Monday so today was his first time seeing Tyler since last week. I told him I was surprised they let us go with Tyler relatively not having an immune system yet (not that I'm complaining since I feel safer at home with all the construction going on there). He said that they were really amazed at how well he did through this treatment. He told me it is highly unusual for a child to have no fevers or nausea or loss of energy or basically no adverse reactions to the Chemo. Tyler acted all through this round the same as when he was off Chemo. He laughed when I asked if I should worry that he did so well (you worry when their sick and you worry when their well). He said that his bone marrow was definitely hit as evidenced by his complete drop in counts and not to worry. They let us go since he really is extremely healthy other than he has a severely compromised immune system. He counts are starting to rebound, white count up, he's holding on to his platelets and hemogoblin. However his ANC dropped today to 16. I was so afraid they were going to keep us. Dr. Langmuir said that is still normal and since the other counts were alright we could go but no school next week yet. We are tentatively scheduled for the first of the three spinals/chemo next Thursday but chances are they won't be able to do it as his ANC needs to be around 800. Tyler feels great and is so happy to be home. He tells me that all the time. We are taking it pretty easy since his counts are so low. He really shouldn't be around alot of people. We feel so blessed that he did so well. We still have a long road ahead and I know it will be a long time before we can breath easily, so continue to keep Tyler in your prayers.

Wednesday, September 26, 2001 at 01:48 PM (CDT)

Tyler is doing great. He is so glad to be home. He laid in his bed Monday night and told me how happy he was to be home "and no more hospital!" I sure hope he's right. He still has to get back on a decent bedtime schedule. He was so used to being up late at the hospital with me right next to him. He wants me to lay with him and talk to all hours of the night. Part of me enjoys this but, he needs to get back to normal. We go to clinic tomorrow to check his blood levels and then we should know when the next three out patient chemos are scheduled to begin. He should be able to start school soon. He's really looking forward to that. His broviac should come out in a month or so. He's very nervous about that even though he knows he'll be asleep when they remove it. Let's hope he doesn't run a fever until that comes out or that means another hospital stay.

Monday, September 24, 2001 at 03:22 PM (CDT)

We got to come home today!!! Tyler's ANC was only 95 but Dr.Womer told us we could go home anyway and we sure didn't argue. They gave Tyler platelets before we left and we need to go back to clinic on Thursday morning. They probably will not begin the three out patient spinals/chemo until next week. Tyler's counts need to be at a certain level before they start that. He most likely will be able to go back to school shortly even if it's only half days at first. It feels good to hopefully have the hospital stays behind us. As soon as he can get his broviac out, we should be pretty close to back to normal.

Sunday, September 23, 2001 at 10:13 PM (CDT)

Well, we didn't get to come home today. Tyler's ANC is still 15 and he never ran a fever but they had hoped to see more of the helpful pre-cells. Unfortunately, we didn't get any of those in the counts today. Dr. Grubb really tried hard to let us go. He had Tyler's labs manually looked at to see if they could count any cells but there were none there. Mommom, Aunt Shirley and Angie came by this morning to visit and this afternoon Aunt Nona, Aunt Diane, Aunt Rose and Timmy and Joey came by. Tyler got a whole blood transfusion today and will probably get platelets tomorrow.

Saturday, September 22, 2001 at 02:23 PM (CDT)

When I checked this morning before I left to come home, Tyler's Hgb was low at 8.2 (he normally gets blood below 8) and his platelets were 55 (below 30 and he gets platelets). While both of these were low, they had stayed pretty stable from yesterday which is a good sign. His ANC was 15. So.. his Dad and I figured oh well, at least we got something. Maybe there is hope for us to get out by next weekend. Well, his Dad just called me and said that the nurse came in and said that they saw alot of "baby cells" in his labs. So much so that they stopped his antibiotic and were going to send us home today! They decided against it to wait and see how his labs look tomorrow morning and to see what he does being off the anitbiotic for 24 hours - which would be 6 am tomorrow morning. We were shocked!! I can't believe it and really hope we can get out of here. How great that would be. We still need three more weeks of out patient Chemo but, it would be really nice to get home! Say a prayer for us tonight and we have Tyler washing his hands every 5 minutes.

Friday, September 21, 2001 at 05:28 PM (CDT)

Tyler is still doing well and still has no counts to speak of. We're hanging in there but it does get boring. Tyler misses his buddies that got to leave, Connor and Matthew. We are glad they got to go home though. His other friend Brian is still recovering from his surgery on his lung so he can't come out to play. No blood transfusions today but he'll probably need blood either Saturday or Sunday. Probably more platelets on Monday.

Wednesday, September 19, 2001 at 04:38 PM (CDT)

Tyler is doing great. He did not have an ANC yesterday or today but, that is normal. While I would have liked to see it stay or go up, there's nothing we can do about it. We are hoping to see it again soon and hope it is strong enough to stay. There is a chance we could come home next week if his counts do start to return. This week is pretty much out of the question since it is already Wednesday. Tyler received platelets today and will get a whole blood transfusion tomorrow. He feels good and is still going to school here at the hospital and playing with his friends. His Dad brings him food from home or a pizza so he is eating well. He played Bingo yesterday and won, again. Tonight is his parent/teacher meeting for back to school so I'm going to that. His teacher is real sweet and sends notes that his class is thinking of him. I know he can't wait to get back.

Monday, September 17, 2001 at 08:42 PM (CDT)

We got an ANC today! That's really good news as it means Tyler's counts are responding. His ANC was 48. It needs to be at 250 or more for at least two days for us to get to go home. His Hgb has stayed the same again so it is stable and Tyler won't need a whole blood transfusion. His platelets dropped and he will probably need a platelet transfusion in the next day or so. I hope Tyler's ANC either stays the same or goes up so we know we are on a postive trend. Tyler's still doing well, eating and drinking with no fevers or nausea. He had school today of course and did his homework. We hope to get out soon and then we will have the three weeks of out patient spinal taps with Chemo given during the taps.

Sunday, September 16, 2001 at 11:49 AM (CDT)

Tyler continues to do real well. No counts to report on but it's a weekend and you really can't put much stock in the labs on a weekend. We've learned that the hard way and the onco docs will tell you that the most accurate results come during the week. We don't go off the floor anymore due to all the construction going on at the hospital. They advised us it would be safer to stay on 3 east. Unfortunately, there is a pretty severe fungus the kids can get from construction work. Wish we had known about this earlier! Oh well, so far Tyler has luckily not shown any signs of this fungus. It does mean no more trips to the Seashore house to play and limits our activities, so our stay is that much more boring. We can't complain though, boring is better than what we've went through during round one. Tyler has many friends and they play Nintendo games or wheelchair races. Tyler and his friends had a pizza party in his room last night. Some Eagles guys came to visit on Friday and AJ Feely (?) and Douglass Hughes played videos with Tyler in his room. They came with Swoop (a hugh mascot) and David Ackers (who the Moms don't mind looking at). Grandmom came this morning with Daddy and of course brought a new toy. Tyler received a package yesterday from his "Chemo Angel", Teresa and her son Dillon. Chemo Angels are a group I had heard about from Connor's Mom. It is a wonderful thing that Tyler and I hope to join once we have finished treatment. He received a stuffed bear he named "Blondie" and books and a bubble set and toy cars. He really enjoyed it and it brightened his day. He told everyone the gifts were from his guardian angel.

Friday, September 14, 2001 at 08:12 PM (CDT)

Tyler continues to do real well. He goes to school each day and plays with the kids after that. He is only hooked up for meds 3 times a day for about an hour a time so that's not so bad. Still no ANC and he got platelets yesterday but the blood levels are showing monocytes which are apparently a precursor for the ANC returning. Uncle Brian, Aunt Cara and Michael came down tonight with Daddy to visit. Our friend Matthew finished his treatment and was released today so each of the kids we went through this with are starting to finish and leave. It's so nice to see a light at the end of the tunnel.

Thursday, September 13, 2001 at 12:37 AM (CDT)

Tyler's doing great. His cultures have all come back negative and he never ran another fever except for the one Sunday night. He's able to be unhooked most of the day and play. Tyler, Matt and Connor (who came back Tuesday night due to an infection) ran around the hallways playing hide and seek most of the night. Still no ANC but it is still too early to think of that yet. I'm just glad he's feeling so well. Daddy and Uncle Paul came down tonight to visit. Tyler had quite a bit of homework tonight. He was having so much fun playing with the kids he asked me if I would get up early and do it for him before school tomorrow. I told him nice try.

Monday, September 10, 2001 at 10:45 PM (CDT)

Tyler continued to do well on Sunday. He and Daddy played at the Seashore House playground. He got a whole blood transfusion on Sunday. That night at midnight he ran his first fever. They drew the blood cultures and started him on three antibiotics. I kept him in the room today and will until we receive the results of the culture. He is still doing well and eating. He says he feels fine. Alittle bored since he is room bound and hooked up to his IV pole now. The good news is that as of midnight Monday the cultures are still negative and they have already discontinued one of the three antibiotics. Hopefully, the culture will remain negative. This would mean whatever caused the fever was mild such as a slight cold or virus that we would have blown off. They'll keep him on the one antibiotic until we're released but that would be ok. He could still be unhooked most of the day that way. No ANC but it is still way to early to hope for the counts to return yet. Connor got to go home today. We are very happy for him but we will miss him and his family very much. He was so cute when he was leaving giving out hugs.

Saturday, September 08, 2001 at 04:11 PM (CDT)

Tyler is doing great. He's enjoying school and having fun with his little friends. They knock on his hospital room door each morning and ask if he can "come out to play". Uncle Don, Aunt Nona and Michael came down with Daddy yesterday so it was nice to have the company. Tyler is getting platelets today and should be getting Uncle Chalie's (if your out there Uncle Chal, thanks!). He got Uncle Don's earlier in the week! I don't know if he'll ever be the same after these two transfusions! Thanks guys for donating. He will probably get whole blood tomorrow. Tyler's two buddies Connor and Matthew are scheduled to go home early next week so I'm sure that will be sad for him. He will really miss these guys and I will miss their parents. It's very nice to have the company during these long days and nights. Tyler is doing so well that we are only waitning for his counts to rebound. If this keeps up and they come back next week we might get out in another 2 weeks. Thanks for the prayers, so far we couldn't ask for a smoother ride.

Thursday, September 06, 2001 at 07:52 PM (CDT)

Everything is still going well. Tyler started school on Wednesday. He likes it and the kids look so cute sitting at the table watching the teacher. He goes an hour a day while at the hospital. Still no fevers or nausea and his counts dropped down to zero on Wednesday. They were still zero today so thats good, in at least it means we did bottom out so there is no where left to go but up. It usually takes 2 or 3 weeks for the counts to return so we're hoping for as quickly as possible and we hope to make it through this period without any complications. Tyler met the Eagles kicker today and got his autograph (I think it was David Ackers??). We went for our daily walk to the Seashore House play yard. Tyler will probably need platelets again on Saturday and whole blood on Sunday.

Tuesday, September 04, 2001 at 11:32 PM (CDT)

Things are still going well. Tyler won at Bingo today (so far I think his record is like 12 out of 13 times and he blames the one loss on grandmom). We really need to get him down to AC. Not much to report on, Tyler looks great and we're still waiting for his counts to drop. They actually went up today, UGH!! It seems so silly to be wanting them to go down but, that's the way it works. Tyler's one friend (Tyler) came back today to begin treatment for his bone marrow transplant. Unfortunately, the boys won't get to see much of each other since we're not allowed in the BMT area and Tyler won't be allowed out of the BMT area but it's nice to see his Mom and Dad. Tyler and alot of the kids on the floor had fun with the music therapist this afternoon. They all had an instrument and were wailing away and singing. That was a sight to see and hear. Especially since I can safely say we have no budding Mozarts on the floor. Our other friend, Connor got some counts today which is great news. Hopefully, ours will start to come back as quickly (if they ever get on the ball and drop!) This evening was fairly quiet, Aunt Chrissy and Uncle Paul came to visit (with Daddy of course). Since Tyler's not on any meds now and no longer hooked up to a "pole" we walked them out to the car. Tyler got a kick out of walking them down to the garage then racing back up 2 floors to see the car come up out of the garage and leave.

Monday, September 03, 2001 at 11:58 PM (CDT)

Hope everyone had a nice Labor Day. We were given our permanent room tonight about 9pm. It's a nice large single room. Tyler and I were able to get setup and hang up his posters and stuff. It always makes it nicer when we have our own room. We're still waiting for Tyler's counts to drop all the way down to nothing. So far they're still hanging in there. Usually we can't wait for them to come back now, we're anxious for them to leave. He's doing really well...no fevers or nausea at all. He's eating and drinking well. He played with Matthew one of the other little boys with AML who is his age most of the day. This evening he played tennis in the hallway with his friend Connor the two year old with AML. He's running around and keeping busy. School will start next week I believe, in the hospital for Tyler. Once his counts drop, we wait for them to return and hope that during the wait no infections pop up. So far no mouth sores although the doctor said today it usually takes a week after Chemo ends for them to begin showing up. Hopefully, we'll bypass this side effect because that really effects his eating and drinking not to mention the pain they cause.

Saturday, September 01, 2001 at 02:16 PM (CDT)

All went well at clinic on Thursday and we were admitted and into our room about 4pm. We currently have a double room until a single room opens up. Hopefully, this will only be for a few days. It's not too bad though since it is one of the larger double rooms on 3 east. Tyler finished his IV Chemo at about 6am Saturday morning and got his last shot of Chemo about noon. We hope that this is the last in hospital Chemo he will ever need! He received a whole blood transfusion on Friday and a platelet transfusion today. So far no nausea and he is eating well. We brought lots of food from home since he will not eat ANY of the hospital food. Not even their toast! He's feeling pretty well and playing with his friends at the hospital. He's looking forward to art therapy again and of course, Bingo. Here's hoping for an uneventful stay!

Thursday, August 30, 2001 at 12:18 AM (CDT)

Well, it's Wednesday night at 1:30am. I'm just about ready to give Tyler his last IV antibiotic infusion. We go back in tomorrow morning at 9am to be admitted. Tyler will get the last of round three's Chemo and it should finish sometime on Saturday. After that hopefully it will be the last of any in hospital Chemo forever! The gameplan is to finish Chemo which will again bring all his counts down and leave him open for the dreaded infections. We then play a waiting game for his counts to come back up naturally. He will not receive the hormone shots this round. On one hand that's nice because Tyler hates them. On the other, they help to get the counts up quicker. We will probably be in the hospital all of September. After that, Tyler gets three weekly spinal taps as an out patient with Chemo given in the spine while they are there. Then that's it. We go for monthly checkups to be sure he remains cancer free. We enjoyed our day and half home. Tyler got to eat steak and shrimp tonight for dinner. That's all I heard about for the last week we were in the hospital so, I had to be sure to stop by the store and pick up steak and shrimp to make for dinner. Most of the day was really spent packing and getting ready for the long haul coming up. Thanks to everyone who has been writing in the guestbook. Tyler likes to read the messages. It gets pretty boring and lonely in the hospital so it helps to brighten his day. We can usually get up to the family center and check the site a few times a week. I really don't get a chance to write back but know that we appreciate it.

Tuesday, August 28, 2001 at 12:49 PM (CDT)

Ugh!! We just got home today. Very long story...On Saturday they decided that we needed to wait the full 24 hours for the results of the blood cultures. They said we could leave at 11:15pm. At 11:00pm they came and told us that Tyler's cultures had grown back positive for a bacteria in one line. Since it was only in the one line and he has two in his broviac, plus he had not run a fever since, they felt we could go home on Sunday. It was a resident who had told us this. She felt that the result was a false positive due to a contaminate in the culture. On Sunday one of the regular doctors came in and told us that since they had already started Tyler on the IV antibiotics he needed to stay on them, even though she did agree that the culture was probably only a contaminate. She said there wasn't anything she could do on Sunday but she would check out Monday morning to see if we could go home on the IV antibiotics. On Monday we didn't see a doctor by noon so I asked the nurse to page one. By 2:00 pm we were still waiting and both Tyler and I were very disappointed and had very fragile nerves. This would make it three times we were packed and ready to go and nothing. By the time Tyler's regular doctor came in at 2:30, the poor thing received the result of both our anger. I had a slight meltdown to say the least. By then it was too late to do anything so we stayed again. We had pretty much resigned ourselves to not getting a break and being kept in for another month or so. They either felt sorry for us or my meltdown was worse than I thought because they came in this morning and told us we could go home until Thursday. For most of you, you are probably thinking why bother but when your cooped up for that long, every minute at home counts. They trained me on how to administer the IV antibiotics at home and sent us on our way. We go back in on Thursday for another long haul but, hopefully that will be our last one.

Saturday, August 25, 2001 at 01:58 AM (CDT)

We got to clinic about 9am on Thursday and were admitted. We had to get a room on 7north since all the beds on 3 east were taken. It is a nice large room so it really isn't a problem. Actually we had the room to ourselves until about an hour ago when they admitted a 9 year old girl at 2 am. Tyler started getting his Chemo at 3pm on Thursday. He did really well and has not gotten sick at all. He did have some problems with his blood pressure about 6pm on Thursday. It was very low (98/23). This went on throughout the night on Thursday but he was fine through it all. We really don't know what caused his pressure to drop so low. Since he was absolutely fine and playing, they just watched him through the night. Friday morning he started acting alittle funny. Very fidgity and alittle loopy. I had the doctors look at him and they said it was a common side effect of one of the anti-nausea meds he was on. Since he was not feeling sick at all they discontinued this one drug and he has been fine since. His pressures have been fine since Friday morning also. Tyler has been running around and playing and really doing great and we were on target to go home early Saturday. However, at 11 this evening he started running a fever. This is a very common side effect of the Chemo he is on so it is more than likely related to that. They drew blood cultures to be sure and have started him on two antibiotics. Now I'm not sure if we'll get to leave though. They may make us wait to get the results of the blood cultures which take 24 hours to come back. I hope not, I'm hoping they just send us home on the antibiotics but I won't know until the docs do their rounds tomorrow. Hopefully the next time I update we are home.

Tuesday, August 21, 2001 at 09:10 PM (CDT)

Tyler is doing well. He's eating and sleeping fine. Enjoying our last few days of freedom. We go in on Thursday to begin round three of Chemo. As I updated before, Tyler will get two days of high dose Ara-C via IV and then a shot of another Chemo drug on Saturday. If all goes well, we will be home again Saturday evening until the following Thursday. This drug is known to cause high fevers and has caused swelling of the brain. If we get through this round only half as well as the last I would be thrilled. In making my rounds through some sites, I came across a poem written by a teenage cancer survivor. I thought I would share it on the site since I found it very appropriate. If any of you have come to visit us in the hospital, you will know what I'm talking about...the one thing that never ceases to amaze me about these children is their strength. They are go through these terrible treatments and tests and for the most part never bat an eye. They take horrible tasting medicines with little complaint, they are hooked up to poles with more tubes they I ever thought possible and yet run down the hallways (pole, tubes and all) playing with each other. They throw up so violently, it hurts me to watch and when done, ask for a hot dog. Tyler had a nosebleed one day so severe he needed a blood transfusion and a specialist to come in and cauterize it and the whole time he kept asking the nurse to move her hand (which was on his nose with gauze pads) so he could see his cartoons. You rarely hear a child cry on our floor and in fact hear alot of laughter. Here's the poem...
The Warrior
Gazing in the mirror,
I see a warrior's face.
Fully clothed in armor,
no tears and no disgrace.

A tear it never offers,
a smile it always gives.
No sadness does it show,
but what a life it lives.

Needles going in
as blood is taken out.
But still no sign of pain,
no cries to make you doubt.

Each day you see this person
and think that they're so brave.
Each day you see us laughing,
the tears are ours to save.

So when you see our armor
and think we're calm and mild,
remember this one thing,
the warrior is a child.

Terra Phillips

Saturday, August 18, 2001 at 06:56 PM (CDT)

Tyler has been doing fine. His ANC was almost 600 and his platelets were holding steady at 79. Actually, I had come home from the shore with a cold so we haven't really been doing much. We went out on Friday to get Tyler and Michael's school shoes and supplies. We are due to go back in to the hospital on Thursday. We should be in until Saturday. Tyler will receive Chemo all three days. We should be able to come home on Saturday and stay home until the following Thursday. Once we go back in then, Tyler will finish round three of Chemo and we will stay in until his counts come back. We will probably be in the hospital all of September.

Wednesday, August 15, 2001 at 08:07 PM (CDT)

We got home from the shore this morning. Tyler had a wonderful time. He played miniature golf three times with his Dad, Michael and cousin Breana. He went on ALL the rides, even the "big" kid rides. The faster the better. He even went on the roller coaster. We got to stop by and see our dear friends Steve and Colleen who live down the shore and Tyler had fun with their kids. We ate pizza and ice cream and went to the big wooden playground on 34th Street. We lucked out and missed the rain down there. It was too overcast for the beach but we weren't going to beach it anyway since Tyler can't get wet or sand near his broviac. At night we watched movies or played games. Tyler really liked the house we stayed at (our other friends, Karen and Dennis, who were so sweet as to lend us their house). He thought it was very cool to be so close to the boardwalk and beach. We had a really nice time. One thing we all found really funny but Tyler didn't, was that a giant seagull pooped all over Tyler's shirt. He was quite unhappy about that! Oh well, they say that's good luck. It was very strange to almost be normal for 2 1/2 days. Seeing this little bald headed kid run around the boardwalk laughing brought tears to my eyes. Tyler had labs drawn today but I don't have the results since we had to go right down to orthopaedics for Michael's appointment. I'll call CHOP for the results tomorrow.

Friday, August 10, 2001 at 08:45 AM (CDT)

We went to clinic yesterday and got there around 9am. Tyler had his labs done and was examined and his doctors were very pleased with everything. His ANC was 315 a large drop from Monday but, that is normal for once you stop the GCSF shots. It takes a few weeks to start to come up again without the added help. His platelets were 16k all of which the doctors say is fine. Since his platetlets were so low, his doctor decided to give Tyler a transfusion so that we could be safe to go down the shore. We then had to wait 2 1/2 hours for the platelets to come up and another 45 minutes to transfuse them. We were just getting ready to leave when we stopped to talk to one of the nurses. While we were talking, Tyler complained about itching. The nurse brought him right back in and called the doctor. Here, he had started to get a reaction to the platelets. We had to stay while they gave him some medicine to stop the reaction. Luckily we hadn't gotten to the car yet. It ended up being a very long day. It was fine though since Connor and his Mom and Aunt were there to be admitted. We were able to spend the day with them. Also, the art therapist was there so the kids could draw and make kites. Tyler really didn't mind being there at all. Tyler's doctor gave us the ok to go down the shore for a few days. We go back to clinic again on Wednesday.

Wednesday, August 08, 2001 at 12:04 PM (CDT)

Tyler has been doing well. He's a little pale but other than that, he is fine. His back is no longer bothering him from the bone marrow aspirate. He sleeps good at night and has been eating. We go back to clinic tomorrow to draw labs and check his levels. He may need to get a transfusion. We are hoping his counts are high enough that we can get down the shore for a couple of days. We have a friend (Karen) who owns a home down in Ocean City and she graciously offered their house to us. We are hoping to go down Sunday and come home Wednesday morning. Both Tyler and Michael need to be back at CHOP for appointments Wednesday afternoon. Michael is finally seeing another doctor about his shoulder. We decided to take him to CHOP too since we were not getting anywhere with the doctors at St. Christophers. Since we are down at CHOP anyway, it seemed easier to take him there also. It will only be for a couple of days and Tyler can't go in the water or play in the sand but it will be nice to take him on the boardwalk and just get away for a change. I really hope his levels are good enough that we can go. We are going to see Jurassic Park tonight.

Monday, August 06, 2001 at 06:02 PM (CDT)

We got to clinic this morning about 8am. Traffic actually was fairly light this morning. They drew Tyler's labs and examined him. His ANC was 4840 which is the highest it has been since treatment began. Therefore, we no longer need to do the nightly shots that Tyler hates. His platelets were very low at 21k but they held off on a transfusion because they think he might rebound any moment. If Tyler begins to bleed, we'll be making an emergency trip down to CHOP. Otherwise, we go back to clinic on Thursday. The spinal came back fine and the preliminary studies for the bone marrow aspirate also came back clear. They found no trace of the leukemia in Tyler's marrow. Tyler's back is a little sore but other than that he's fine.

Sunday, August 05, 2001 at 09:33 PM (CDT)

Tyler is doing well. We've been doing his shots each night and hopefully when we go back to clinic tomorrow they'll tell us his counts are high enough that he can stop them. We are hoping to get down the shore for a few days next week. This will be the first time Tyler has been down in quite some time. We're going to try to see Jurasic Park 3 tomorrow night. Not much to report, all in all it's been an uneventful few days which is fine with us. We rented some movies and went out for ice cream. We'll update tomorrow with the results of Tyler's tests.

Thursday, August 02, 2001 at 11:27 PM (CDT)

Tyler had an ANC today of 646. They let us come home! We got to leave about 1:30 even though we were ready by 10:00 but that's CHOP time. We have to go back to clinic at 8am on Monday morning to draw labs, maybe get platelets and to have a bone marrow aspirate and spinal tap. We will probably be there most of the day but that hopefully will be the last visit unless we need another transfusion. They are letting us use the home nurse for our blood work again which is great. I told Tyler's doctor that we wanted two weeks off and he said that would be fine. Once we go back for round three, Tyler will get two days of high dose ARA-C via IV and get a shot of L-asparaginse. This is different Chemo than what we were given during the first two rounds. We'll get to come home for 5 days as long as Tyler doesn't run a fever. Then do the same all over but this time the Chemo will deplete his counts to zero one more time. We then need to wait it out again until the body rebuilds. Infection will once again be our biggest fear. This medicine is known to cause fevers itself, so we hope to get those 5 days in between. We really sailed through this last course unbeliveably well. Tyler never got nauseous and had no pain what so ever. The only slight thing was three days of mild fever. We were so lucky. Two of Tyler's friends made a trip up to the intensive care unit and another one had lung surgery. Today as we left, yet another is fighting pneumonia so we really need to count our blessings. Once we are done round three, we need to go back weekly for three weeks for spinal taps and then we will have Tyler's Broviac (chest tubes) removed and be released for monthly followups. It's hard to believe that the end may be in sight. Once again we want to say thank you to all of you who made us food during these past five weeks, came to visit or called or provided rides or donated blood/platelets. It really is deeply appreciated. Everyone has been wonderful and we are forever in your debt. Tyler is feeling great as he has been since May. He looks wonderful. He's eating well and actually enjoying his summer. Since he was feeling so well this round he took advantage of most of the activities the child life specialists offered each day. He went to art therapy and made a model house out of wood, he went to the library and rented movies or played on the PC. We made daily walks through the hospital out to the roof top playground and played kickball. Although this last activity caused quite a bit of black and blues with the low platelets and all. He has lots of friends there and has a love/hate relationship with a few of the nurses. They really torment each other. The one young resident was very sweet and would come and play Pokemon nintendo games with Tyler at night since he was such a night owl and the resident would be up anyway. We hope that round three goes even half as well.

Wednesday, August 01, 2001 at 02:01 PM (CDT)

Well, the counts for this morning were pretty good. Tyler has an ANC of 210, a WBC of 3.5 and platelet level of 92,000. They want to see what his ANC is tomorrow but, Tyler's doctor told me that he is pretty confident that we'll be able to go home on Friday! That would be great. They cancelled the bone aspirate and spinal tap for tomorrow. They are looking to have us come back to clinic on Monday and if his counts are high enough, they'll do both then. Most likely we will have to come home on the hormone shots which we didn't have to do last time. Tyler really is not thrilled with the shots but hopefully, we would only have to do them until Monday. I told the doctor that we need to be home for two weeks before we begin round three and he had said that would be ok. Tyler and I just need to get a break and mentally regroup before we start another course.

Monday, July 30, 2001 at 10:35 AM (CDT)

Tyler's ANC was 0 today but there may have been a problem with the labs. We're still pretty confident that they are on the rise so we'll see what tomorrow's counts are. They did postpone Tyler's bone marrow aspirate and spinal as I had thought they would. They will be rescheduled depending upon what his counts are over the next few days. Tyler is in the library now as I update the site. He is playing on the computer. Pretty boring stuff going on here, not much to report. I'll update again later.

Sunday, July 29, 2001 at 03:45 PM (CDT)

We got an ANC this morning of 84!! Hopefully, this one will stay and continue to rise. Tyler's WBC has risen again also. He is getting blood today. Still feeling great, no fevers or nausea. I'm not sure if his counts will be high enough to do the procedures tomorrow. We'll have to wait and see. If not tomorrow, then most likely on Tuesday. I can only thank God we have come through this so well. It is unbelieveable that we had no complications. Two of Tyler's friends have AML and one (Matthew)just went home after having to have surgery to remove a piece of his lung due to a fungal infection and the other (Brian) is in intensive care now fighting an infection. We also heard today that a little girl (Briana) that had ALL and was fighting for almost three years passed away yesterday. Please pray for the families of these children and give yours an extra hug tonight.

Friday, July 27, 2001 at 10:53 PM (CDT)

Well, still no ANC yet although Tyler's other blood levels are great. He actually had 115k for a platelet level and a WBC of 2.2. While these counts are low for a normal person, they are pretty good for a kid just coming off Chemo whose counts were down to zero. We hadn't had levels like those since we had been home on the beginning of our last break. They are counting young cells in his blood so they think it will be any day now. Tyler is tentatively scheduled for a bone marrow aspirate and spinal tap on Monday. The bone marrow will assure us that all is well and that Tyler remains in remission. The spinal will make sure that the Leukemia has not spread to his spine and they'll also give him a shot of Chemo while they are doing the spinal. Tyler is still doing great, no fevers or nausea. He enjoys playing with the other little boy named Tyler here on our floor. They play Nintendo or Knex. Their most recent project is working with the art therapist with wood. They are each building a "house". Our other friend, Connor, went home yesterday (yeah Connor!), his counts came up enough to allow him to start his second break. We're still hoping to get out of here soon. The time just feels like it is dragging this time around. Tyler is looking forward to seeing Jurassic Park 3 and getting down the shore to go fishing.

Wednesday, July 25, 2001 at 12:20 AM (CDT)

Just getting a chance to update tonight (Tuesday), Tyler's ANC did drop back down to zero. This happens all the time and did happen to us during the first round also. His white count and HGB are holding their own and this is good, it shows that his counts are still rebounding. We're hoping for an ANC again tomorrow. Hopefully, once it returns again, it will start to rebound fully and quickly. His platelets are low in the low thirties and he'll get a transfusion tomorrow. He's doing great though. No fevers in almost two weeks and he feels fine. We actually get a little bored since he's feeling so good. He's playing and getting around. Most times he's pole free since he really doesn't get many meds. Just a couple of antibiotics he gets at noon, 6pm and then he's hooked up from midnight to morning. The doctors told me he's the healthiest patient they have on the floor right now. We had a visitor today from the Phillies...Ricky Batalico (I'm sure I spelled his name wrong). He came on the floor and visited with the kids and gave each a hat. I didn't see it but Michael said he saw the visit on channel 10. They were here taping his visit. Tyler wasn't on t.v. though. Unless we get some really big counts tomorrow we'll be here until at least next week. Hope those counts come back soon!

Saturday, July 21, 2001 at 11:18 AM (CDT)

Great news...Tyler has an ANC today!!!!! This was totally unexpected as he is a few weeks ahead of schedule. It took him two weeks and a day to rebound after the first course and I had hoped for the same this time around. This would have put us at next Friday. The doctors had told us that the second round can take longer and were expecting an extra 2 to 3 weeks on top of that. I still hoped for the same as last though. I pray every night to St. Peregrine (the patron saint of cancer) and my prayers were answered and then some! The nurse came in early this morning to give me the good news. We are thrilled. The ANC is only 16 but it's there. Hopefully over the next week his counts will continue to climb and we could get out as early as the week after that. As long as he stays healthy and fever free. Keep us in your prayers and remember to pray to St. Peregrine for Tyler.

Friday, July 20, 2001 at 11:11 PM (CDT)

Another good day, no nausea or fevers. Tyler ate lunch and dinner today and drank better. They cut his liquid nutrition down to run over 18 hours today and hopefully they'll cut it down to 12 tomorrow. Tyler is still on a few antibiotics but he was able to be let loose from his pole for a whole four hours today. His brother Michael is sleeping over with us tonight. They had a nice night. They played Nintendo, we rented a movie and they talked and got a chance to see each other. I was a little aprehensive that there would be arguments (cooped up in a small room and all) but surprisingly, it was a very pleasant evening. I just settled them down to bed at about midnight. The nurse told me that they are beginning to see the makings of some cells in Tyler's blood work. Hopefully this means we'll start to see some counts by late next week!

Friday, July 20, 2001 at 12:34 AM (CDT)

It's Thursday night about 1:30 and Tyler is sleeping. He has had a good few days. No fevers and his recent blood cultures have been negative for infection so I think he beat this one. He is still on the antibiotics and will remain on them until his counts return. The doctors are very pleased with his progress so far. He is doing great, a 1000 degree turnaround from the last time. He is only eating a little but they are supplementing him with the liquid nutrition. He did eat some steak tonight with some strawberry milk. His one six year molar is coming in so really I think that is part of the problem with his eating. He has had no nausea at all this go around and the diarrhea is very slight. They will probably cut his nutrition down tomorrow to only 12 hours a day. that would allow him a few hours each day to be "pole" free. He played outside of the room alot today. We went over to the Seashore house (next door) to play on their playground on top of the building. The Seashore house is part of CHOP. Tyler couldn't do very much since he was hooked up but, he got out at least. He has alot of friends here. Most of the afternoon he played with a fellow AML child also named Tyler. They are about the same age so they have alot in common and had a real nice time. Once our company left this evening, Tyler invited another boy named Tyler (yet a different Tyler) in to play Nintendo. This Tyler has a brother in the transplant unit. His family is from Oaklahoma. Our Tyler just loves this Tyler(8) and his brother Trevor(11). Still no counts to report yet. We're hoping for them to begin showing up late next week.

Tuesday, July 17, 2001 at 11:03 PM (CDT)

Tyler's blood cultures came back and he has what is called a staph epi. This is a relatively minor infection compared to what he had the last round. The doctors have him on two antibiotics and think it should be cleared up in a few days. He has not had a fever for two days now. He did develop two minor ulcers in his mouth from the Chemo. This has caused him to stop eating so they have put Tyler on the liquid nutrition for now. If he starts eating again they'll wean him off that. Still no nausea and he is feeling pretty well. He has a little diarrhea but nothing compared to the last time. All in all, he is feeling good. Bingo was today and guess what, Tyler won again! I think I need to take him to play for money. They had to give Tyler whole blood today since his Hgb was down to 7.8 and he'll most likely receive platelets tomorrow. Still no ANC and the daily shots are going ok. Tyler really hates them as do all the kids on the floor. Amazingly they go through much worse with no complaints but they all dread these shots. From what they say, the medicine burns a great deal going in. Tyler is passing the time building with his Knex and playing his board games. Hopefully he'll eat tomorrow, he requested spagetti and steak and Dad is bringing that down with him.

Sunday, July 15, 2001 at 03:02 PM (CDT)

Tyler continues to have the fever. During the night it got up to 102*. It does break with the Tylenol but it doesn't seem to be leaving. He also had stomach cramps during the night and was very uncomfortable. The diarrhea is back and we're not sure if that is related to the antibiotics or if that is due to the infection yet. They are running tests to see if they can determine the cause. Still no nausea which is a good thing. He's not eating great but he is still eating a little bit. He did much better with his shot last night so I hope he has come to terms with getting that again. Hopefully we only have another week and half of those and we'll start to see some counts come back. Once his counts come back he seems to do so much better. We bought him a few new games since he's pretty much in bed. He likes to play checkers, guess who and battleship.

Saturday, July 14, 2001 at 12:31 PM (CDT)

Tyler continued to run a low grade fever throughout the night so they have started him on three different antibiotics now. We'll have to wait for the results of the blood cultures to see if the infection is anything more serious. If so, he'll get started on yet a fourth one. That one would be the strongest one they have that he had been on the last round. It is terribly hard on the body and Tyler gets very high fevers from that one along with convulsions and high blood pressure so I hope we can avoid that one. We'll have to wait and see. He still is feeling fine though and that is the important thing. So far no nausea or diarrhea. He's continuing to eat well and drink. He'll be alittle limited for playing since he's back hooked up to his pole but we'll manage. He's getting platelets now as I write this and his counts are all low as to be expected. It will probably be another week or two before we see any of his counts start to come up. I'll update more tomorrow.

Friday, July 13, 2001 at 11:51 PM (CDT)

So far this stay has been uneventful although, I hope I'm not speaking too soon. Tyler has been responding wonderfully. He has not been sick once and is eating and drinking well. He has only needed a whole blood transfusion once and platelets once (both last Sunday). His counts are very low and his ANC is 0 which means he is terribly open to infections. With his platelet count so low, he will most likely need transfusions very soon. But he is definitely doing better than last time. He is playing and having a good time with his friends from the hospital. He had a low grade fever last night (100*) but it only lasted an hour and tonight he has another as I write this at 1am. The doctors are going to check his blood for an infection at 5am and if he still has a fever at 4am they are going to start antibiotics. Tyler started getting his GCSF shots on Thursday. He really hates that but it helps his body rebuild and gets those counts up so that we can get home again. He gets these nightly until we get released again. Keep your fingers crossed for us and say a prayer that things continue to go so smoothly. Love to all, Noel

Wednesday, July 11, 2001 at 05:43 PM (CDT)

Ok, I know it's been a while since I updated, I'm sorry. I was not near a pc or was tied up so I'll start from Friday. We got to the clinic about 9:15 and stayed there waiting for a room to open up until 6:30 pm. Finally we got booted out of there because the nurses wanted to go home. We then went to the 3rd floor and sat in the family room while we waited for a room. We were able to get into a room about 10pm. We got probably the worst possible room. It was no bigger than a shoebox and there were two patients in the room. I couldn't even fit in a folding chair. Tyler started his Chemo on Friday and we hoped for a better room on Saturday. On Saturday, they told us that the room we were in was not really supposed to be for patients but to be used as a treatment room. Unfortunately, there are so many kids on the floor they had to start using it for patients. Both of us were pretty miserable on Saturday as we didn't get any sleep, there was no room to play, the cable broke on the tv and the phone didn't work. Good news is that Tyler didn't get sick at all and was eating. On Sunday it was not much better and I was about at my wits end. Luckily the other patient and his parents were wonderful. Sunday afternoon the nurse came in and told us that a room was opening up and to pick a number between one and ten. Whoever picked the right number would get the room. Luckily we got the right number!!! Also, we are back in the same room we had for the last few weeks before we left. Ty and I liked that room. We got to move in about 10:30 Sunday night. Tyler finished Chemo Monday afternoon and got unhooked from his "pole". He has been eating great and has not been sick once. He realyy keeps me going. We are constantly doing something. He's even been up late watching movies. He won at Bingo again Tuesday night. He's one hot bingo player. He is really taking advantage of the things that CHOP offers to the kids this time around like story time, etc. I'll try to update again soon.

Friday, July 06, 2001 at 07:06 AM (CDT)

We're leaving in about a half hour to go back to CHOP. We'll most likely be there for six to eight weeks this time. Tyler will finish round two of Chemo, we'll wait for his counts to drop down to nothing and then return to decent levels again before we can come home. He'll begin his GCSF shots on Wednesday. These shots help the body to rebuild. Once again he will be extremely susceptable to infections. We can only hope for an uneventful stay. Tyler will be back to getting the multiple blood/platelet transfusions so if anyone has any platelets to spare, we could use them! We hope to get on the third floor this time but we hear that there are many sick children currently there and the floor may be full. We may have to get one room and then transfer once another room opens up. If we get on the third floor, I'll update the journal page. Otherwise, I may have to ask Aunt Chris to update when she can. See you all soon. Love, Tyler, Noel, Mike and Michael

Tuesday, July 03, 2001 at 08:08 PM (CDT)

While we were in the hospital last week, the onco kids had a special visitor. The Hershey Kiss mobile came down from Hershey Park to see all the kids and "Cody Cocoa Bean" stopped by the floor. Tyler couldn't wait to talk to him and really enjoyed the visit. He loved it so much, he wanted to go to Hershey Park so we went up there today. Tyler had a great time. He really enjoyed himself. Afterwards we stopped by Aunt Cara and Uncle Brian's house. Michael had Uncle Brian shave his head and Tyler wanted to be just like him (of course). This worked out well since we had been trying to get Tyler to shave his head. While he did keep some hair, it was very fine and alittle long in spots so it looks much better this way. Now it can all grow back in evenly. Tyler has been fine on our break, he hasn't even needed the nausea medicine they gave us a prescription for. He's eating very well and having a good time. Happy July 4th to everyone. We're just going to hang at home tomorrow since Tyler can't be around alot of people up close and can't go swimming. I'll update again on Thursday.

Saturday, June 30, 2001 at 09:24 PM (CDT)

We're Home! Tyler made it through round one of round two great. He tolerated his Chemo very well this week. He was sick in the mornings on Wednesday and Thursday but nothing on Friday and Saturday. He gets the majority of his Chemo through IV but there are a few he must take orally. Since he learned how to swallow pills on our last break we switched his oral meds to pills on Wednesday and he did fine the rest of the week. We take the pills and I cut open a gummy bear and insert the pills in the gummy. Tyler then swallows the gummy whole. It works like a charm. Tyler ate like a pig this week even though he had the dental surgery. The doctors couldn't believe he ate so well and never once complained about mouth pain. I was not able to update the site since we were not on the oncology floor and I did not have access to a PC. We go back in on Friday and will get the rest of round two. This should finish on Tuesday morning. He'll get another lumbar puncture on the Monday after we go in. This is the rough part. All of Tyler's "counts" will drop down to nothing again and he will most likely get very sick and weak as he did last time. It's a real trauma on the body when all the counts go down. He'll probably be back to getting the daily blood transfusions and the wait will begin for his body to rebuild itself. We'll most likely be in the hospital another 6 weeks at that point. We hope to get a room on 3east (the oncology floor). These rooms are private and since Tyler and I are so familiar with the floor it's more like home to us there. In the meantime, right now Tyler's ANC was over 4400 and his platelets were over 280,000. His color is good and he is still strong. I'll update again before we go back.

Tuesday, June 26, 2001 at 09:17 PM (CDT)

Tyler was admitted to CHOP today. He had his dental surgery at 1:00. All went well, he had the 3 teeth and a spacer removed. While he was in the OR, they also did a lumbar puncture. He came through both procedures with flying colors, and was back in recovery by 2:30. By 3:00 we were in a room. All Tyler's lab results were wonderful. The spinal fluid was free and clear, his ANC, believe it or not, is up 2263, and his platelets are great at 283. As always Tyler came through it all like a trooper, and was happy to know that his first day back was Bingo day. Tyler is the Bingo king, he has won a prize everytime he's played but once. And yes, he won again today! His spirits were good most of the day, except for medicine time, he's got to re-adjust to that routine. Tomorrow he'll try pills instead of liquid, and hopefully that will make things a little easier. If all goes according to schedule, Tyler should be coming home Saturday evening, and be scheduled to return for the long haul on Friday, July 6th. Tyler is in room 7463, unfortunately, there are so many kids in the oncology unit that they had to send the overflow up to the 7th floor. Pray that all goes well, so Tyler can be back home on Saturday.

Monday, June 25, 2001 at 03:55 PM (CDT)

Well we are on for tomorrow. Finally! We need to report to Day surgery at 11:30. Tyler's dental surgery should begin sometime around 1pm. Hopefully, we'll be in our room by 5pm. I'll try to update the site tomorrow night with the room number. Keep you fingers crossed for a smooth day tomorrow. Tyler is still fine. He's a little sad today knowing he is going back in.

Monday, June 25, 2001 at 02:15 AM (CDT)

Technically it is Monday, but it is 3:16 a.m. and I just put some pictures on an AOL homepage for Tyler. What a hassel it has been to get some pictures to take! I will eventually get some of Tyler and Michael together and hopefully a few closeups of Tyler. That will have to wait for another day since my photoshop is not working well and if I don't quit for a while I'll throw the PC out the window. Just click on the link below and you should be able to see some "normal" size pictures (for those of you who had seen the "Jumbo" Tyler, you'll know what I mean!) In a few hours I'll call CHOP for the latest update on our being readmitted and update the site again. I do hope we can go in on Tuesday. We did have a nice weekend though and Tyler is doing great.

Friday, June 22, 2001 at 08:55 PM (CDT)

So far it looks as though we are still on to be admitted back into CHOP on Tuesday. Tyler and I went to see Dr. Dolittle 2 today. Tyler liked it. After dinner, we played hockey. Lately he likes to play hockey in the driveway against his father or I. He has his own hockey stick and net. He also rode his scooter around the neighborhood. We'll try to enjoy this last weekend and prepare for Tuesday. Keep your fingers crossed that nothing else comes up to delay us any longer.

Wednesday, June 20, 2001 at 06:38 PM (CDT)

OK, change of plans again since I last updated this afternoon.....Tyler's doctor called to let us know that the dentist wasn't quite ready on such short notice. He had already been booked for surgery tomorrow. Sooo, we are now scheduled to be admitted on Tuesday instead. Same agenda, teeth fixed and then start Chemo but it will be Tuesday instead of tomorrow. Oh well, we'll get another weekend and this way we might be home over the fourth of July holiday (not that we'll be able to do anything since Tyler will not be allowed to be around many people). Sorry for all the confusion. We'll keep the site updated. Needless to say, Tyler is fine with an extra few days.

Wednesday, June 20, 2001 at 12:59 PM (CDT)

We got the results of Tyler's labs from yesterday and his ANC is up to 1116! We're are going back into the hospital tomorrow to have his teeth fixed and to start the second round of Chemo on Friday. I'm glad that his counts went up as this means there is nothing wrong within his marrow. It's also nice to get going again as the sooner we finish, the sooner we can come home for good! Tyler is not quite as happy to be going back. He understands that it is necessary but he sure has enjoyed his time at home. He is still in good spirits though. Pray that all goes well for us and there are no complications. They said if everything is going well, we can come home Tuesday afternoon for a few days and go back for the long haul on Monday, July 2. They would finish round two of Chemo and then we would stay in until his counts come back up again. This is usually 4 to 6 weeks. That means we could get home for our second break sometime in August.

Tuesday, June 19, 2001 at 05:46 PM (CDT)

We got the results of Friday's labs on Monday. All of Tyler's counts still look good except his ANC. It dropped slightly again to 456. The home nurse came out this morning and drew labs again, we should have the results tomorrow afternoon. We're still on standby to go back into the hospital. Tyler and I washed the car today and played hockey. He's feeling great and sleeping well. Of course, we need to be careful since his ANC is so low about infection. Hopefully his ANC will begin to rise with today's labs.

Friday, June 15, 2001 at 12:18 AM (CDT)

We received some mixed news yesterday...Tyler's labs came back with the results of his blood work. While most of the results were wonderful, in fact, increasing quite nicely, his ANC had dropped. The ANC measures his ability to fight infection. When we were released it had been at 1512. It dropped down to 300 after we came home but this was to be expected. It then rose to 400, then to 652 last Thursday. The ANC needs to be at 1000 for us to be readmitted to begin round two of Chemo. Since it had been back on the rise, it looked pretty definite we would return this Thursday as planned. The results from Tyler's labs on Wednesday had the ANC at 530 so it had dropped back down. Therefore, our readmission had to be cancelled. I spoke with Tyler's doctor and he was very pleased with the other results (his platelets were at 226,000 and Hgb was at 10.8). At one point Tyler's platelets in the hospital were actually down to 8,000. He told me that they do see this and that the ANC can be the last for the body to heal and respond too. Since all his other levels were fine he said not to worry and to try to enjoy our extended break. If the other levels had shown a decrease this might be a sign of a problem but they are responding sooo...They will draw more labs on Friday and next Tuesday. Once the ANC is at 1000, we will go right into the hospital so we are on standby. Tyler is doing well otherwise. Eating up a storm, no fevers, playing and enjoying himself. We'll keep you posted.

Tuesday, June 12, 2001 at 12:47 AM (CDT)

Time flies...I try to update the site every two days while we're home but time just seems to slip away. Tyler is doing great, all is well. How about those Devils losing! Tyler being the true fan he is, switched alliance mid way through the game. Once it seemed apparent the Avalanche were going to win he decided that he had two favorite teams. We teased him relentlessly and told him we would have to take back all the Devils stuff he got. He still loves the Devils and has all the stuff around. He wouldn't part with any of it. I guess he just didn't want to admit defeat (wonder where that comes from). We have the home nurse coming to draw the labs Tuesday morning so we should know by evening whether we are still on to be admitted back into CHOP on Thursday. I'm pretty sure we will. That's ok. We had a nice break and had a chance to rejuvenate, we're ready. Tyler has a new favorite movie, "The Emperor's New Groove". It's really cute and there is a good line during it where the emperor in about to go over a waterfall says "bring it on". That's us, bring it on.

Friday, June 08, 2001 at 02:19 PM (CDT)

Tyler graduated kindergarten today! He went to school yesterday for a few hours to practice with his class. He sat in the front row for graduation and sang in the song "June June". He was glad to see his friends and teacher one more time before school ended. Afterwards we went to McDonald's for lunch and saw the movie "Animal". We got his lab results back and his platelets were up to 114,000. This is wonderful. His ANC is still low at 652. This means he is still open to infections but he is doing very well. We are scheduled for more labs next Wednesday and to return to the hospital next Thursday to begin round two of Chemo. They say if Tyler does well, they'll let us come home for a couple of days again after the first 4 days of Chemo. After that we'll have to go back for the long haul of 4 to 6 weeks. Tyler is eating well and playing and back to sleeping well. Tonight, more scooter riding is on the agenda. I'm still working on uploading some pictures. Trying to get it to work right. There are 2 there but for some reason, they come up huge.

Wednesday, June 06, 2001 at 01:09 PM (CDT)

Tyler's had a good couple of days. Still riding his scooter around the block and playing with all his new toys. The home nurse came out this morning and drew his labs and we changed his dressing. Surprisingly, this went real well today. I think Tyler is finally getting used to it. We should have the lab results later on today. Because they drew labs today, we don't have to go down to CHOP tomorrow, yeah. Tyler is going to school tomorrow for a half day to practice for graduation on Friday. He is very happy to be allowed to graduate with his class.

Monday, June 04, 2001 at 08:57 PM (CDT)

Yesterday we had a small birthday party for Tyler with his Aunts and Uncles. He really enjoyed himself. He slept very soundly last night until 10 am this morning! We had a lazy day today which was nice. It really was our first one since being home. Tonight we're watching some new videos Tyler got for his birthday...102 Dalmations and The Emperor's New Groove. We're really enjoying the normal everyday routines we used to take for granted.

Saturday, June 02, 2001 at 08:19 PM (CDT)

Tyler is doing great. We went to the movies yesterday to see "Shrek". He really liked it. He rode his scooter again today and went to the food store with me. He's really enjoying his break at home. He's eating well and fell asleep tonight watching his Devils play. Dr. Langmuir (Tyler's oncologist) called us yesterday and told us our break is being extended an extra week. This is great. While we're anxious to get the second round of Chemo started, our break is going so fast. I'm going to talk to his teacher on Monday, since we'll be home I'm hoping Tyler can graduate with his kindergarten class next Friday. We're to go back to hospital on June 14 to have three of his teeth removed to prevent infection, have another spinal tap and begin Chemo the next day.

Thursday, May 31, 2001 at 09:08 PM (CDT)

We had a very busy day today, we went to clinic early this morning. Tyler's doctor is very pleased, his platelets have started to rise by themselves. These are the last to respond,especially since he has been off his shot while at home. They went up 10k since Tuesday from 25 to 35. We are on track to return to the hospital on Thursday. Tyler's doctor actually said we did not need to return to clinic prior to Thursday which is good news. Although he said he would call us to check on him. After the doctors we stopped by daddy's work to give him the good news then went to St.Anselm's to visit Tyler's kindergarten class. All his friends were so happy to see him and he held court explaining to his classmates about his "leukemia germ" and his chest tube and his shots. He had never really talked about this to anyone except me before so I was very surprised to hear him being so verbal about everything. Then after dinner Tyler went riding on his scooter then we went to Diary Queen for a treat. Tonight we're watching Tyler's team as the Devils are still in the running for the Stanley Cup. All the nurses tease Tyler about liking the Devils. He keeps a pennent above his pillow on his hospital bed and they hide it on him or cover it with Flyers emblems while he is asleep. This really tics him off and is funny to watch.

Wednesday, May 30, 2001 at 10:01 PM (CDT)

Tyler had a wonderful birthday. He was very glad to be home and got lots of toys. He couldn't decide what to play with first. Thanks to everyone at Prudential for the tons of presents. He played power rangers and playdoh and used his art supplies and played Buzz Lightyear on Nintendo. He is always using his CD player, so we now have enough batteries to get us through our next stay (we go through a pair a day). We were all overwhelmed by everyone's thoughtfulness. Little Michael was so excited that he had presents too and it wasn't even his birthday! Everyone has been so kind it makes me cry just to think about it. Tyler's visiting nurse came out today to help me with changing the dressing on his chest tube or "tubies" and "friend" as Tyler calls it. This is the one thing that gets to Tyler. He really dreads this each week and it was a bummer it had to be done on his birthday but, it was over quick. We went to Applebee's for dinner since this is Tyler's favorite place to eat for some reason. All his aunts and uncles called to wish him a happy birthday and he built his new Matchbox tuneup center with Aunt Diane. Glad I got out of that one. Plus Aunt Diane owes him a dollar since he did eat that giant slim jim! The time home is going so fast. It's back to clinic tomorrow and we hope to get home early enough so that we can stop by school. Tyler wants to say goodbye to his class before the school year is over.

Wednesday, May 30, 2001 at 01:09 AM (CDT)

This journal page is really for Tuesday. Even though the website is on central time, you know me and my late hours...I still couldn't technically beat Wednesday morning. Tyler went to clinic today and actually had fun. We met his other friend (Matthew) there and they got to play with each other in between their tests. This worked out real well and helped to make his first visit an easy one. I think that helped to alleviate some of his fears. For those of you who were not aware, Tyler has been up talking for the past two nights into the wee hours of the morning. While I appreciate his company, he has been cramping my style. I'm usually the only one up at 3am! I think he was apprehensive about what would go on at clinic when we go. Now he knows and he slept well or should I say is sleeping well so far. After we got back from clinic he ate McDonald's (of which Michael and I never want to eat again - there's a McD's in the hospital) and played. His "best friend Colin" came over and they played and argued and played again just like always. He's really enjoying his time at home. His counts were stable, no real fluctuations up or down. Therefore, we did not need any transfusions today. His counts should start going up soon though.

Monday, May 28, 2001 at 10:40 PM (CDT)

Tyler had another good day. We went to the mall this afternoon to buy his brother sneakers. He rode his new bike for the first time. Santa gave him the bike for Christmas. He was only able to go around the block once as his legs got tired pretty fast. He ate well again. We go to the clinic tomorrow morning to have labs drawn. While we're there we are going to stop by the Onc. floor and visit his friends and nurses.

Sunday, May 27, 2001 at 09:04 PM (CDT)

Tyler had a good day today. The home nurse came out a drew a cbc. CHOP called me with the results a short time later. All of his counts came down slightly. While this is alittle disappointing, it is to be expected and the doctors told us this would happen. He is not getting his GCSF shot (which helped his body to produce cells) since he came home. His platelets only came down by 2000. Really this is a much smaller drop than usual. He usually drops 20k or more. They consider this stable and told us not to come down for platelets. They actually were quite pleased with this. Tyler ate like a pig today (yeah). He requested corn on the cob and "steak with a bone" which of course he got. We also got good news that our friend from the hospital, Connor, had his counts appear for the first time.

Saturday, May 26, 2001 at 11:17 PM (CDT)

Well we made it through Tyler's first full day home. He slept well last night, more than I can say for us since we worried about him and checked on him quite often. He had more energy today and enjoyed playing with his brother. They still argue so some things never change. He has a very runny nose and coughs frequently, hopefully this is just due to allergies. He has no fever so they say it's ok. The home nurse will come out tomorrow morning to draw labs and check on him. Chances are pretty good we'll end up down in the CHOP ER for platelets then come back home but, we can hope that his body has started making platelets on it's own. I just don't have a good feeling since he has needed a transfusion pretty much every three days. The doctors say this is normal and that the platelets are the last to return. At least we're home and back to semi-normal. Thanks to everyone who has signed the guestbook with their prayers and thoughts. We are waiting for some film to get developed and I'll upload some pictures soon. The site allows for three. Tyler has two friends from the hospital that have AML. One is a six year old boy named Matthew Blair who is currently home on his break waiting patiently for his counts to come up so that he can begin his second round of Chemo. The other is a two year old boy named Connor Holmes who is still waiting for his counts to come up enough so that he can start his break. Having been there as long as AMLs are, I know they can sure use it. When you say your prayers, add these two little guys also. We'd like nothing more than to have the three boys be friends for a long, long time.

Friday, May 25, 2001 at 01:48 PM (CDT)

Tyler was diagnosed with AML a severe form of Leukemia that they say only 500 children a year are diagnosed with.I guess you could say we won the wrong lottery. Tyler was admitted to the hospital on April 17, 2001. He began his first course of Chemo treatment on 4/19/01. On 5/4 he got an severe infection in his blood and started an extremely potent antibiotic that has side effects almost as bad as any disease you can think of. He had extremely high blood pressure and heart rates and spiked very high fevers. On the night of 5/9 Tyler had two seizures due to a fever of 106*. The doctors were afraid he had had a stroke and we were moved to the ICU. We came back to the oncology floor on the night of 5/11. The next week Tyler was very ill with terrible bouts of vomiting and diarrhea. The Chemo had thankfully killed all of the leukemia cells but also all of Tyler's healthy cells as well. His little body was very weak. Tyler had lost 9 lbs and when you only started out at 50 lbs that's pretty significant. On 5/20 we got the good news that Tyler's body had begun to make healthy blood cells on his own. He has progressed so well that they have now sent us home on a two week break! We received word today that he is officially in remission!!We still have a long road ahead, they will remove three of his teeth in two weeks to prevent an abcess which would be very dangerous for him and begin his second round of Chemo the next day. We will be back in the hospital for another 6 to 8 weeks at that point. God willing, his next bone marrow aspirate and spinal tap at the end of that round will again show that he remains in remission. We should get another short break and then begin the third round of Chemo. Tyler's break could not come at a better time, he will celebrate his sixth birthday on 5/30 and he will be home where he wanted to be. We would like to thank our family and friends for their support. Without it we would never have made it through these past 6 weeks. All of the prayers, food, gifts, rides and calls are deeply appreciated. We could never begin to express the gratitude we have for everyone. We can only hope one day soon to reciprocate with a party to celebrate Tyler's full recovery. Thank you all from the bottom of our hearts. Love, Noel & Mike and Michael

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