History

Saturday, April 11, 2009 7:02 PM CDT

Five years.

I miss you, Sasha.

Thursday, December 18, 2008 3:03 PM CST

Saw this and couldn't help but think about how much it describes how I feel.

"The sorrow of the dead is the only sorrow from which we refuse to be divorced. Every other wound we seek to heal, every other affliction to forget; but this wound we consider it a duty to keep open, this affliction we cherish and brood over in solitude. Where is the mother who would willingly forget the infant that perished like a blossom from her arms thought every recollection is a pang? Where is the child that would willingly forget the the most tender of parents, though to remember be but to lament? Who, even in the hour of agony, would forget the friend over whom he mourns? Who, even when the tomb is closing upon the remains of her he most loved, when he feels his heart, as it were, crushed in the closing of its portal, would accept of consolation that must be brought by forgetfulness? No, the love which survives the tomb is the one of the noblest attributes of the soul. If it has its woes, it has likewise its delights; and when the overwhelming burst of the grief is calmed into the gentle tear of recollection, when the sudden anguish and the pensive meditation on all that it was in the days of its loveliness, who would root out such a sorrow from the heart? Though it may sometimes throw a passing cloud over the bright exchange it even for the song of pleasure or the burst of revelry? No, there is a voice from he tomb sweeter than song. There is a remembrance of the dead to which we turn even from the charms of the living."

Washington Irving, 'Rural Funerals'

Thursday, October 22, 2008 2:38 PM CDT

Happy 12th birthday, my little angel. What would I give to celebrate it with you.

Tuesday, August 26, 2008 5:20 PM CDT

It's so hard to come back to this page, but not a day goes by that I don't think of my little girl. I miss you with all my heart. Thank you for all your loving guestbook entries, it warms my heart to know Sasha is loved and remembered.

Wednesday, April 11, 2007 3:54 PM CDT

I can't believe it's been three years. I hate the thought that it's been three years since I've seen you and that the time will only grow longer and I will never see you again.

I miss you every day, my Sasha.

Mom

Monday, April 11, 2005 10:14 PM CDT

My kiska, it's been one year and twelve hours since you went away, and it might as well have been yesterday.

I'm sorry I could not bring myself to update this page, it was just too hard. Still too hard, but I feel like I owe it to you and to all those who've been there for us for so long.

I hope you like the memorial marker I designed for you, and it is so nice to have a vase to put the flowers in so they keep longer. I hope the squirrels are keeping you good company, I know they come and sneak away the Fruit Rollups I keep bringing you, but that's probably a good thing.

Funny how time doesn't really change anything, they lie, it doesn't make anything better, only now it is a little easier to think a little more about the good days instead of the hell days.

Good night, baby, sleep tight.

Mom

Sunday, April 11, 2004 7:59 PM CDT

Sasha passed away at 10am this morning, April 11, the Easter Sunday.

She fought hard all night and we fought right alongside her, but her body was just too weak and her heart could not take anymore. I held her in my arms and she slipped away quietly. After the tubes and lines were gone, she looked so peaceful, with a tiny smile on her face.

The service and funeral will probably be on Wednesday, I'll post the details here. For now please let us grieve privately.

Thank you all for all that you've done.

Friday, April 9, 2004 10:16 AM CDT

Two steps forward one step back. Hopefully not the other way. That's probably the best way to describe progress since Tuesday.

The doctors really kept their word on revising Sasha's treatment and being much more agressive on the path towards recovery. By Thursday night, we have come down to 23 on the ventilator and quite a bit down on the blood pressure meds, although we've had to go up and down on them depending on how Sasha was doing.

Thursday morning the doctors said she is moving in the right direction; her kidney functions have slightly improved, possibly thanks to more fluids, and her spleen appears to be a bit smaller. There is still quite a bit of concern due to consistently high levels of lactic acid in her blood, indicating that her cells are not doing well with using oxygen and nutrients; this is a very serious problem on the cellular level that we cannot do anything to fix and can only wait and hope that it will improve (i.e. we can make sure there is enough oxygen in the blood by regulating the ventilator and that the blood is circulating adequately by monitoring the blood pressure medicines, but we cannot force the cells to take the oxygen out of the blood and use it for energy).

There haven't been any more episodes of VTAC, instead now she gets tiny arythmias, you can barely notice the irregularities in the beat and can only see them because her pulse would suddenly jump by about 20 points - and none of them last any more than 5-10 seconds. Frankly I much prefer that to the really scary VTAC. They've been doing a good job managing her potassium and electrolytes; Sasha is also getting insulin because her sugar gets pretty high probably due to the steroids she gets before receiving platelets and maybe because of the same cellular inability (or damaged ability) to utilize nutrients. Time will tell.

I haven't been to the house in two weeks sleeping at the PICU, and I haven't left the hospital building since the VTAC episodes started several days ago. Aunt Nancy was visiting us from Atlanta and, before leaving, got us a room for the night at the Crown Plaza across the street from TCH to take a break while staying close. Sasha was doing really well so my mom stayed with her and I stayed over at the Crown - thank you Nancy!! So that's what uninterrupted sleep feels like :) It was really a much needed break. But by morning I started having anxiety dreams, apparently not without a reason. This morning we had a little setback, seems like. The nurse was changing out one of the syringes with Sasha's blood pressure medicine, and for some reason Sasha decided to forget about the paralyzing medicine and try to take a breath of her own over the oscilator. Her oxygen level dropped quickly to mid-80s, and they had to go back up on the oscillator pressures and oxygen concentration, up to 27 from 23 and 70rom 50xygen; that's about where we were a couple of days ago. I'll let you know what happened and if the plans have changed as soon as I find out some more details from the doctors. No wonder I never want to leave the hospital, every time I go even for a little bit Sasha wants to play tricks on her poor grandma.. ;)

Again, huge thank you to everyone who came to see us, you guys always brighten up our day! Keep in mind that the PICU unit gets shut down between 6.45pm and 7.45pm for shift change and they usually don't let anyone in during that time.

Please continue to pray for Sasha, this truly has been a week for miracles - after all, both Passover and Easter talk about amazing miracles, what better time to ask for one than now! Keep us in your thoughts, and make sure to hug your children a little more and a little tighter today.

Love,

Yuliya

Tuesday, April 6, 2004 11:02 PM CDT

What a day.

Good day, actually.

For a change :)

Now I have enough knowledge in my mind to support the hope in my heart I have had despite everything we've gone through.

This early afternoon the wonderful Dr. Dreyer came in asking if I wouldn't mind meeting with the whole treating team together. (Dr. Dreyer has been treating Sasha's leukemia pretty much from the start in July '03 and has been involved in her treatment one way or another this whole time). We went to a PICU 'retreat' room where I'm sure patients and there families would not normally be allowed. Assembled there were a group of the PICU doctors headed by Dr. Loftis (who turned out to be the sister of one of the senior partners at my firm, what a small world) and three (I think) of our hematology-oncology team.

To start with, although rather alarmed I was relieved to see the big team in the same room at once talking to each other; I'm sure they do that through the day but actually being at the same place at the same time must make it much easier.

The purpose of the meeting was to revise Sasha's course of treatment in view of her improvements over the last week.

Cool.

Huh?

Didn't realize that much changed since yesterday when we were told no other courses of treatment were available because she was too sick for any clinical trials and could not survive any more medicine. But hey, that sounds like good news, I'll take it. Here's what they had in mind.

First, it appears that her leukemia is dormant after all, at least for now. Of course nobody can say for sure how long this may last for, but at least at the moment it appears that her bone marrow is aplastic (it is not making anything at all), which is almost close to what preparations to a transplant would require. Moreover, it also appears, although impossible to confirm without invasive tests, that the leukemia in her organs is also either dormant or dead and although the liver and spleen are still hugely enlarged it may not be necessarily due to active leukemia in them. Don't ask.

Additionally, her jaundice may be due not to active leukemia in her liver as we initially suspected but to the fact that she has been receiving blood products that are normally incompatible with her B- blood type after getting Winro to allow that. Again, don't ask, I'm not sure how that would work but I'll take it.

Her organs are still functioning, although marginally on the verge of failing sometimes but functioning. We had another 2-minute episode of VTAC today, but it was triggered by switching out the syringe of her blood pressure medication and went away quickly; in fact instead of dropping, her blood pressure got really high for a minute and then went back down to normal. Her blood pressure does not plummet anymore every time they turn her, although it did go really low when they took an x-ray at 6 am (but not since). Her ventilator pressure settings got turned down twice today, down to 27, her oxygen saturation is 99-100% (mostly 100 lately) and after they finally took her blood gas (showing how well her lungs eliminate CO2, the flip side of the oxygen saturation) it wasn't as bad as they feared it to be, about 60 (it used to be higher before, 70s and up). Moreover, we've been weaning her off the norephinephrine, one of her three blood pressure meds (other two are ephinephrine and dopamine), and we're not even hours away from being done with it, and her blood pressure (knock on wood) is doing great so far.

So, a few things came out of the positive developments over the last few days and today. The team spoke to Dr. Krantz, the head of transplant here at TCH and Sasha's transplant doctor(-to-be). His position is that she still needs to be completely off the ventilator - not just the oscillator but any ventilator. If we can get her off the ventilator and keep her organs in good enough shape, we may have a shot at a haploidentical transplant with semi-myeloablative conditioning.

English: haploidentical = half-matched transplant from a parent (remember, each parent contributes 50% of DNA, so normally each parent will be only a 50% match, a 3 out of 6 parameters, but we were a bit lucky and both Tom and I are matched on 4 out of 6 parameters); semi-myeloablative = less toxic than the ordinary four days of chemo plus four days of twice a day full body radiation treatment to destroy the body's immune system and prepare it for receiving the donor's stem cells. Because it is not as strong, the conditioning is also not quite as effective but Sasha couldn't survive the full-blown course and this still offers us a very real chance. I'll take it.

Now, is it likely that we'll get there? Hmm.. probably not very. But most importantly we now have a purpose, a goal, a place to go to, instead of sitting and waiting for my baby to die, if not from heart, lung or kidney failure than from untreatable leukemia that will inevitably return. Yes, the chances for a good outcome in a transplant where the donor is only partially matched and the conditioning has not destroyed everything that needs to be may not be really good, but they sure as heck better than, I'm sorry if I hesitate to say that bluntly but that's the truth, a certain death.

We also discussed a number of other things involving Sasha's treatment, most important being that we have scrapped the 'direction of care' orders issued Wednesday after the 'verdict' and now doctors have the disrection of doing everything necessary to get Sasha to where we are going, barring the CPR/chest compressions/petals. Basically they are finally back to treating her like a normal patient, not a hopeless dying child - with meds up or down as necessary, labs as often as necessary, blood products as often as necessary, close observation of her electrolytes (low), glucose (high), blood gas (high),sodium (high) and whatever other things that need to be monitored super closely.

Her today's chest x-ray showed that there may be a small leak of air from her lungs into her chest. I am not sure how serious it is at this point since they haven't made a whole lot of hoopla about it yet. But we've discussed a potential procedure where they have to put a small tube in her chest to relieve the air leaking from her lungs into her chest to prevent it from collapsing her lungs.

Of course the procedure can be very risky, since Sasha's platelets are very low and the risk for bleeding is really high; but again, not perfoming it if necessary will cause certain damage and likely death, whereas perfoming it may be risky and do the same but still has a chance for saving her life. I ok'ed it; hopefully if needed it can be done in a non-emergency context where the surgeons could essentially catheterize the wound to stop the bleeding.

We've talked about many other things, including weaning her off the ventilator a little quicker (turning it down every 12 hours instead of 24); getting her off norephinephrine and, if necessary, replacing it with another blood pressure drug that may be a bit more beneficial for her platelet retention; as for her antibiotic coverage, it was decided to wait with giving her any until she shows signs of needing it, like fever, labs or drop in vitals.

I'm sure there were more issues, but as you can imagine some hope for transplant and going back to adequate level of care are the two most important ones. She is still very critical, and I realize fully well that any little change or even no change at all can still cause any of her organs to fail and for her to go.

But I am once again living to see my child get better, not waiting for her to pass away. There is still too much I need to tell her, too much I need to teach her, and too many things to do. Mainly I just need to tell her not to be scared no matter what, that there are people who love her and will take care of her on either side, no matter if she decides to stay or leave. But she'll get the puppies if she stays.. do you think bribery will work? :)

Love,

Yuliya

PS Tom, happy belated birthday, sorry it had to be such a difficult day. Thank you everybody for food (Larry, that bbq is amazing!), fruit and chocolates, and the care package from my favorite V&E people was amazing, I never knew I needed those things till I had them! Shel and Tammy, I've been sleeping under your blankie every night since I had it and it made the ICU floor a million times more comfortable.

Most importantly - Andy, thank you for being here for me every minute, I don't know how you do it working at the shop every day and then coming here feeding me and staying at the hospital every night. You are amazing and I know you were sent to me for a reason.

Monday, April 5, 2004 5:41 PM CDT

I'm sorry I haven't posted yesterday. The last couple of days have been very difficult for me, I guess things have caught up to me a little.

In short, there haven't been any major improvements and in some way there has been further deterioration. Two more VTAC episodes yesterday, including one at midnight that lasted over 3 minutes. More VTAC today, together with huge drops in blood pressure, practically every time she is moved or they take her xray or switch out her blood pressure meds, but some times for no reason at all. Any episode of VTAC can turn into a lethal ventrical fibrillation. It may not be a bad way to go, but even though in my mind I know she can go any second you can never really be ready or prepare yourself for it so every time it happens my heart stops and I just pray that this is not it, not yet.

I'm sorry I can't give you any good news. My heart still hopes for her recovery, that maybe she can turn around, her organs can get better, we'll get off these machines and meds and finally get our go at transplant. My head tells me that I know that's probably not going to happen, that she is dying like all the doctors keep telling me, that there is nothing they can do but watch and make her comfortable. For the first time my heart is not agreeing with my head over something that important and I'm not quite sure what to make of it except just keep on hoping, no matter what reason may tell me.

She is comfortable, and that's the most important thing right now. She doesn't want to go, I know that, she will fight till the end. I don't remember if I told you, but that's so much like her. When she couldn't pee and they were getting ready to put in a catheter, she said 'but I can go myself' and actually did.. it may not have been enough to prevent them from putting in the catheter, but it's so much like her. And right before she was about to get intubated, she asked 'mommy, what are they going to do to me' and I tried to explain, and she said 'but I can breathe' - with that mask over her nose, high pressure air whooshing out of her mouth every time she'd try to speak, and she was still fighting. I know that's what she is doing now - 'what do you mean I was supposed to die on Wednesday? Watch me, I still want to live.'

We had another big meeting with a bunch of our ICU and hematology-oncology doctors. They came in to tell me (again) that she hasn't made any improvement that would allow them to give her any more drugs agains her leukemia, that her leukemia is probably coming back and may explode again in the next few days, and that there isn't anything they can do. They didn't tell me anything I didn't know already, they just didn't tell me anything I actually wanted to hear. Her organs are all functioning only marginally, although none have failed completely as of yet. She really looks like herself now, having shed liters of fluids, but her skin is really jaundiced, yellow, most likely from the leukemia in her liver.

I have been very frustrated with some of the level of care she's been getting here, similar to her not getting xrays anymore after the 'verdict.' Our leukemia doctor came in to talk to us with all the other doctors and didn't even know about her big VTAC episode from last night, that's pretty embarrassing, I wonder if they even bother to read her chart anymore. ICU attending last night told me he was pretty much 100% sure that her VTAC episodes were caused by low levels of electrolytes in her blood (chronically low potassium and lowered magnesium), but nevertheless after her last night's long episode of arythmia the doc on call didn't even want to check for the electrolytes even though her last lab was over eight hours old.

I actually had to go and insist on it; turned out they only do her labs twice a day, and that's for everything - blood CBC, meds levels, electrolytes, etc. I told them of my frustraction at today's morning meeting, that I've had a feeling that they all concluded she was a dying child and washed their hands of her, that I think she deserves a higher level of care than that and that I'm getting tired of being her doctor, nurse and specialist 24 hours a day and they need to start doing their job for a change. There was a lot of polite nodding in response, let's see if anything's going to change. I'm going to fight for her until there is no more fighting to be done; I'm sure many of the doctors here are parents themselves and I'm amazed why it is so damn hard for them to understand what I am talking about.

Saturday, April 3, 2004 10:42 PM CST

Day Three of the "Verdict".

I was planning to post earlier this afternoon and tell everyone what a good quiet day it's been but Sasha decided to give me a runaround first. But all is quiet for now.

The morning started great. Our hemonc doctor and the PICU doctor came in at about 7-8am to tell me that her morning x-ray looks better than yesterday, lungs are more expanded and there is less fluid. Ever since they took her off the fifteen thousand useless and toxic antibiotics and antifungals on Wednesday that weren't doing squat anyway, her kidneys perked up and pumped out lots of extra fluid. She was so swollen, and now she finally looks like herself, although since Tuesday she lost all her hair that has grown since January. Her kidneys got rid of so much fluid that they have cut her Lasix drip (diuretic) by 1/3, and she's about even now on her fluids.

Since Sasha handled the turned-down ventilator so well they turned the pressure down on it again. I'm still struggling with understanding the physics of the high-frequency oscillator but her settings are now at 50% oxygen, down from 60% and 100% earlier this week, 30 for pressure, 75 amplitude and 33 volume, still on 180 breaths a minute. She's handled the change very well, her oxygen has been on 99 or 100% all day.

When I asked a respiratory technician to tell me what the goal is, where do we want to get with the settings to wean her, turned out we are still a long ways to go - 40% oxygen, 10-15 pressure, 40s for amplitude. Taking one step a day with pressure it will take us over two weeks to even try and get back to the other ventilator, but I'm so scared to look anywhere past one hour that I'm just not going to worry about that right now and just enjoy the fact that she is showing all the doctors the finger :)

She's been a super trooper all day. Good steady pulse in mid-150s, blood pressure nice and stable, 99-100% oxygen. So I figured it's safe to run off for thirty minutes and take a shower at the Ronald McDonald house upstairs before they throw me out for contaminating the place. I tell her not to pull any tricks on Grandma while I'm gone and take off. Not even twenty minutes later I barely hear the phone ring from the shower, didn't get to it on time; it rings a second time and the front desk of RMH tells me I need to come down to my daughter's room. So I pull on clothes as fast as I can and run.

When I get down everything is back to stable, but turned out that Sasha had a 2-minute episode of VTAC, ventricular tachycardia, that went away by itself. Never heard of it before, nurse explained that it's a very dangerous and potentially fatal condition when the lower part of the heart and ventricles do not contract in synch with the rest of the heart. Sasha's heart rate went bouncing between 120 and 200 beats a minute, and the peaks on the heart monitor looked very irregular, very tall mixed in with very short ones.

We breathed a sigh of relief that it was over, but Sasha of course had a different opinion. I wonder if she figured that if I wanted to know what it was she'd show me - and show me she did about forty minutes after the first episode. I have to confess I felt close to having a heart attack myself, and all I could do was take her by the hand, stroke her bold head and tell her to calm down, that it's ok. The second episode lasted no longer than a minute, but that certainly was one of the longest minutes of my life.

Another thirty minutes later Sasha's blood pressure fell from stable 130/70 down to 70/30 in no time at all.. Talk about holding your breath.. But slowly but surely it climbed back up to 130/70 over what seemed like eternity but could not have been any more than ten minutes.

Our doctor told us about VTAC and said that this is probably signaling that Sasha's heart is getting very tired. Well after all those poisons they've pumped through her, what did they expect?! It was perfectly healthy even a month ago.. She said it can kill very quickly, and combined with the strong sedation is a quick and painless way to go. A way to get a patient out of VTAC is electric shock (petals, I assume) and the doc would not recommend it as it would signify that she is ready to go; but Tom and I have decided agreed against the extraordinary measures, they are too painful and too damaging and even buying time at that point would be pointless.

But the doc also explained that among the multitude of reasons that could cause VTAC are a couple of simple ones, such as low magnesium/potassium or possibly too much blood pressure medicine that was pushing her heart too much. Sasha's magnesium was a bit low, 1.4 instead of 1.6, so she got both some extra magnesium and potassium. The nurse also said that the quick drop in blood pressure followed by recovery could be explained by the fact that she changed out syringes with blood pressure medicine, although that happened about 30 minutes before the incident and I don't know if that's likely.

Since then she has also received more platelets (she also got platelets and blood in the morning, and even before the transfusion her platelet count was 22, highest pre-transfusion in weeks!) and she is also getting TPN, food in a bag, although somewhat diluted since they didn't think she could handle the full concentration. I'm glad, even though it's additional volume of fluids she could use some yummies for her tummies even if she can't taste it, she hasn't had any nutrition for a while.

So.. I don't know if magnesium/potassium did the trick, but all has been stable since the 4.30pm and 5:20-5:30pm incidents. Knock on wood. Today has been better than the last couple of days because at last instead of waiting for my child to die I can't wait for my child to get better. Screw caution, if the worst were to happen I don't think it could be any less devastating whether I still had hope or not. I can't wait for my beautiful sweetie to get of the darn ventilator and show everyone what true love and will to live can do.

And most importantly - thank you. Please know that I read the guestbook every day, and although I'm not able to respond for now I try to read my emails every few days as well. Your support means the world to us. I can't wait for Sasha to wake up so I could read her all the letters and notes. Keep doing what you've been doing - thinking of her, praying for her, sending her energy, I do believe that for things to happen you have to put it out there into the world.

Thank you those who gave her blood, platelets and white cells, we owe you her life; her family has just grown by of you blood-brothers and sisters out there. Thank you those who came by to see us, your presence lights up our day, even if it's just for one hug. And thank you those who came by to see Sasha, I know how much courage it takes, I know how difficult it is to see her like this, and still coming not just for you but for her - this might be your one chance to tell her how much she means to you.

Love you all.

Yuliya

Friday, April 2, 2004 1:22 PM CST

Sasha is showing them all.. I don't think anyone here had any idea who they are dealing with lol I don't know where she's been getting her strength from but she has no intention of going anywhere any time soon.

Ever since the 'verdict' on Wednesday, Sasha's been very stable with good vitals - 98-100xygen and pretty good pressure and heart rate (high at times but that's what keeps her going in part). Two good stable quiet nights in a row, that would make you wonder.. Although to be honest I always wondere.. If they never figured out what caused her lung disease in the first place and what it was that was making her lungs so wet, why would they be so sure that it could never be fixed, at that based only on some fuzzy x-rays and number settings on the ventilator?

Like my mom warns all the nurses in advance: "her mother is a lawyer and I'm a bitch, so be careful" - we've learned to know what is going on and to participate in every major decision. Understanding, paying attention and being on top of things has paid off multiple times, from preventing medications meant for a different child from being administered to insisting on doctors taking their time in their decisions and giving her a chance they thought she did not have. Well it may pay off again.

They stopped taking her x-rays yesterday (and stopped tha antibiotics) and doctors (except our wonderful hematology-oncology docs) stopped coming in at all. Well, I don't think so Tim. They wouldn't know a miracle even if someone gave it to us this way.. I had a talk with our attending hemonc and they restarted taking x-rays and monitoring her properly. Of course my primary concern for close monitoring is adequate sedation more than anything, she must not suffer in any way. But you never know what else you may find out if you just don't give up.

I am afraid to hope again, and I warn you also not to raise your expectations too high. The worst can still happen at any second for all too many reasons. But..

Last night I crawled into bed next to her, sang her her favorite lullaby and was talking to her. I kept telling her how much I love her and how incredibly proud I am of her. I am thankful that I have always told her that every day of our life, but it seemed even more important now. And I told her that when it came to really important things I've always wanted her to decide what she wanted to do, what made her happy. And this was one of those times. I told her I didn't want her to fight and hurt and suffer because she was holding on just for me, because I wanted her to stay behind more than anything in my life. I told her I wanted her to decide for herself, that I'll be ok, that she needs to decide whether she wants to stay or go. And I asked her to let me know if she could, because without hope I was dying with her in that room every minute. And then I told her of my dream for her from the other night, us coming home and playing with the puppies and making their bed in her room and taking them for a walk.. happy things we both would d..

When I finally fell asleep closer to morning, I had a dream that felt about as real as they get. I was dreaming that I saw her sit right up in bed, vent tubes and everything, and she had no pain, in fact she was kind of a little groggy and silly like she gets when they give her a little sedation, and she tried talking to me, something funny, I can't really remember.

Next thing I know, Tom is nudging me on the back telling me to wake up because doctors needed to talk to us. The usual powwow of ICU and hemonc doctors piled in to tell us that - Sasha's x-ray is looking better this morning and they'd like to try to turn the pressures on the ventilator down by one setting a day.. Huh? Whatever happened to 'she won't make it past Wednesday or Thursday'? Nevermind, I'm not even going to question that, I'll take it. :)

So right now we are a little better than yesterday, for I have a tiny speck of hope. Nothing else changed, the cancer is still there as agressive (although it may be just me, but last night I thought her tummy looked a bit smaller, and she is definitely not as swallen today as she was yesterday). High fevers still come and go, and even if her lungs could get a little better it may take weeks if not months to get off the ventilator, time we may not have because of the cancer. So again, don't get your hopes up, but maybe someone just gave us this little speck of hope to get through this time an hour at a time not feeling quite so helpless and hopeless as we have been since Wednesday.

This morning's Xray showed that her lungs expanded a bit more, although they are still wet, whatever that may mean for us. They turned the ventilator pressure down a bit this morning, and Sasha is staying really stable and taking it well.

No matter what, we'll go down swinging.

Thursday, April 1, 2004 12:05 AM CST

We've run out of time.

Yesterday Sasha was really struggling with maintaining her oxygen and keeping her blood pressure up. They had to keep increasing her blood pressure medicine to keep it from dropping below 50/30, and increasing the pressures on the oscillator. The PICU doctor finally came and layed it out. She has irreversible injury to lungs that will soon cause her heart to fail. She has maybe hours, and we have to decide to what extent we are willing to go with extreme measures..

If her heart stopped or if she went into a respiratory failure, they could do CPR, use shock, but that would probably not result in anything and pushing hard on her chest would cause her severe trauma and bleeding.. it's a painful way to go. Or we could either withdraw support, she is pretty much on the highest level of life support, they said they've never seen a child her size be on the ventilator at such high pressures - or we can choose not to escalate support any further and just let things run its course.

All the doctors - the ICU, hematology-oncology, the whole pow-wow came by later and confirmed the conclusions.. Even if there was a silver bullet that could cure her leukemia (and even five days of destructive transplant-like chemo didn't do the trick), she still could not survive because her lungs progressed to the point where they could not heal. All other organs are really damaged too, liver, spleen, kidneys, heart, and that disqualified her from transplant - so even if we fixed what we can't fix, there is no place to go. We had to decide what to do.

Now what kind of &*^%$ choice is that?! This is not fair, asking a parent how their child should die.. They took all hope from me. Even one miracle would not be enough. We can't withdraw support, it's not human, it's too painful, how can you ask someone to do that? She is on highest oscillator pressure settings, 100% oxygen, can't go any higher - so we just wait.

Our two sweet night nurses moved her a bit so I could crawl into bed next to her for the night. I held her hand in mine and put my other hand on her chest and kept dreaming about us all coming back home in Andy's big red truck, walking through the door and maybe there would be two little puppies waiting for her downstairs like she always asked for, and she could take them upstairs with her to her room and play.. It was such a clear picture in my mind, it was real, and I kept asking for a miracle in my head, because I'd give anything for it.

She showed them all thought.. despite the deterioration during the day, she stayed so stable all throught the night, great blood pressure, great oxygen, good pulse. I know she wants to stay too.. One time when we were driving to the hospital we were talking about her disease and it must have dawned on her that it could kill her, and she started crying and told me that she did not want to die.. all I could say is she is not going to, we've got the best doctors, everything will be alright.. and to think I actually believed it then..

She lived throught the night, despite what the ICU docs thought, and she is still fighting. We are all fighting with her, because no matter how futile it may seem even the 'we are sure' doctors always leave a one percent possibility for miracles and acts of God.

Tuesday, March 30, 2004 4:35 PM CST

I don't know what to say. Or how to say it. Basically they told us nothing is working. We can still wait two more days and maybe the chemo from Saturday and Sunday will do something more, but barring a true miracle there is just nothing left.

There are other meds and there is radiation, but she is just so sick they cannot give Sasha anything else unless she gets a bit better by Friday. But she is getting worse with every day. This morning they put her on the oscillating ventilator after a whole day and night of very high fevers and watching her oxygen drop.. by this morning she was on 100% oxygen and barely managing saturation rates in 80%-range. Her kidneys are on the verge of failing and they are talking about dialysis. They say it's a miracle she's gone this far. Leukemia is just everywhere; the disease came back the worst where it started - her gums and her spleen. The tummy is even bigger, I couldn't imagine this was even possible, and her gums are just like huge purple bags, and her mouth is constantly bleeding. But her lungs are the sickest, and they think all the signs are pointing towards a respiratory arrest at some point.

I've been surviving all this days on the tiny speck of hope that her lungs will clear up and they'll take her off the ventilator and we will go to transplant. Transplant, even with all its dangers and side effects, now is not even a distant reality anymore, more like a dream.. What haunts me the most is the last thing she barely whispered to me before they sedated her and put her on the ventilator - 'Mommy, what are they going to do to me?' I told her about breathing, and kept saying how much I loved her, but all I can think of is how I failed to protect my baby and how much this hurts.

Please pray for her.

We need a miracle.

Yuliya

Monday, March 29, 2004 1:20 AM CST

Saturday night was quiet, I think I got at least 6 hours of uninterrupted sleep lol. Vitals have been looking pretty stable for a couple of days; occasional fevers bring heartbeat up, but that's about it.

Got a good look at Sasha's gums and almost wish I hadn't.. they look almost worse than what they were when she just got sick.. terribly swallen, little pouches and bags, seeping blood because of low platelets - leukemia cells like to gather up there and cause terrible swelling, it's called gingival hyperplasia, not uncommon in Sasha's type of leukemia (AML M5). There's blood seeping from her mouth quite a bit, but at least it seems that the amount of blood/mucus/whatever suctioned from the vent tubes has decreased. X-rays look the same - but hey, at least not worse. Same pressure for second day, peep 13, so at least we are not backtracking.

She got her chemo on Saturday (did I mention the docs decided to give her the fourth and fifth doses of ifosfamide and VP-16) and seemed to have tolerated it ok, fluids being the main issue she managed to stay almost perfectly balanced, i.e. she peed out as much as she took in (I'm telling ya, I've never been so happy to see my child's pee :) ). She really needed this chemo, even after three huge doses her white count started climbing again within only a few days.

This is now a real race, we need to get her better, off the ventilator and to transplant before the disease takes over completely and we can't control it with anything. I take some comfort in the fact that a lot of bright minds are thinking about this and trying to figure out solutions.

I told them time and time again that so long as there is a chance, no matter how small, of getting her better we will not stop, and I think we are all on the same page about that. She surprises doctors all the time, some of them never expected her to come even this far or to keep on fighting as hard as she has been despite all the complications, poisons and infections that fate has been throwing at her. I need her back with me and I'll be fighting for her and with her however long it takes.

Last couple of nights being so quiet and good, I went home for an evening and let Tom stay over at PICU. I've been feeling like a truck ran over me, or, more accurately, like something sucked out all the living energy out of me.. To be honest I was struggling to walk now, in addition to struggling to eat or sleep.. couldn't leave the hospital either because it just got worse, at least being with her I had some peace of mind that I knew what's going on and she knew I was with her. But I'm feeling a lot better now, today I had some peace even being away for a bit, athough I kept calling to check on her. I'm ready for more, so bring it on :)

Saturday, March 27, 2004 3:14 PM CST

Quiet night. Stable vitals, no fever (a slight fever in the morning, probably due to meds and platelets), who would have thought a tiny air mattress can be comfortable when the alarms don't go off every few minutes. My friends Shel and Tammy made us two awesome blankets, I've been sleeping under one of them the last few nights, so comfy.

Sasha is still on the old respirator, so far so good. Doc said the x-ray looked a bit better this morning. She sure has been peeing a lot - I tell ya, I've never been so happy to see my child pee in my life! Her swelling has gone noticeably down, especially in her legs, although her tummy is still very large. She peed out almost two liters negative (i.e. 2 liters in addition to all the fluids they've been giving her) for the last two days, the diuretics seem to be working.

They still don't know what's going on in her lungs. They are still very wet and require quite a bit of pressure from the ventilator. It is possible to drain them somewhat with the diuretics, but there seems to also be some inflammation going on that releases fluids into the lungs. They have her pretty much on every med possible, but no cultures have grown so far so still don't know what the infection is, if any.

Forgot to mention, Tuesday apheresis of my stem cells went well, they got enough in one 5-hour sitting - 12 million cells! That's 12 million good guys waiting to go into Sasha and kick some bad guys' butt.. Can't wait.. I'm just praying at this point that we'll get that chance, that we'll get to transplant soon.

She will get two more doses of strong chemo in addition to what she has already received. They saw a slight increase in blasts a few days after the second dose and needed to give her the third; fourth and fifth hopefully will buy even more time, but it will still be a matter of maintining a delicate balance with her fluids. She needs enough to counteract the bad effect on her bladder, but not so much that she retains a lot again. I'll keep my fingers crossed.

Thursday, March 25, 2004 11:43 PM CST

Hell continues. Things were continuously getting worse since early afternoon. I had to leave the hospital to go get my root canal for the tooth that's been keeping me awake for weeks now (I didn't want to go sooner because I was afraid the medicines or infection could interfere with collection of stem cells for the transplant, but now that's all done). I stopped by the house on the way back from the dentist to take a quick shower and ended up crashing on the bed for a couple of hours, unable to move.

When I was already driving back to the hospital, my mom called to say they were getting ready to move her to a more intensive ventilator. How I didn't get into any accidents or didn't get any tickets I don't know, but if a blue rabid Rav-4 pissed you off in the med center today, I apologize.. They talked about the possibility of putting her on the other machine, hi-frequency oscillator, the last few days but it was a distant possibility that suddenly got very real. Apparently the high pressure of simulated breathing from the current machine, if maintained for a long time, can cause a barrel injury to the lungs where air leaks outside the lungs and can collapse the lungs due to the pressure (it is treated by inserting tubes into her chest, obviously something we want to avoid). This other ventilator sends high frequency jets of air into the lungs, and for some reason it is easier on the lungs and may be better for their recovery, although before coming off the vent completely she'd have to return to the old one first.

Initially the doctors were saying that going on the other ventilator may significantly delay things, that some kids stay on them for weeks and weeks - we don't have weeks and weeks, we barely bought us a few days from leukemia taking over, maybe a couple of weeks, with the chemo, and at a very high price at that. But the ICU doctors say that it shouldn't delay things at all, just a different type of machine - i.e. if she needed to be on a ventilator for a week, she'd be on it for a week regardless of the machine, it's just that this one is easier on her lungs given the high peep pressures required.

They were ready to move her to the new machine when I got here, ICU doctors wanted to hook her up right away and the machine got calibrated and ready to go, but at the last moment our hemonc (hematology-oncology) doctor said let's wait and give her another chance to eliminate the extra fluids in her body, as it seemed that her urination has been alright. Her fever hit 102.9 under arm for a while, and it was around 101 most of the day, although we finally managed to bring it down a little to 99-something.

Needless to mention, I spend pretty much every minute of my time here holding her hand and glued to the monitor showing her oxygen saturation levels. Right now she is breathing 85% oxygen, and her saturation levels are only about 92-93% (before she was breathing 60% oxygen with close to 100% saturation). The x-ray from this afternoon looked even worse, chalk lungs, i.e. lots of fluid in them making lung tissue cloudy in the x-ray. We'll keep watching her really closely all night and possibly move her to the new machine during the night. Wish us luck.

Yuliya

Thursday, March 25, 2004 5:42 PM CST

We took a step back unfortunately. Sasha's lungs showed more fluid and her oxygen rate kept falling low so they had no choice but to turn the ventilator back up to high peep (13-14) on Wednesday. The leukemia doctors agreed to finally give her the last third dose of chemo that they couldn't finish Saturday, that went in last night, and there were still some fluid rentention issues so they also put her on a continuous diuretic drip.. today sounds like she is getting the fluid out better, but her lungs are still wet.

This morning the ventilator got turned down to 12 peep, and her oxygen saturation levels dropped from a good 100 down to low to mid-90s. Her pulse also jumped up quite a bit, it was in the 90s to low 100s, now it's up all the way to 160-180s sometimes, but docs say they are not too concerned for now. We'll see.

Platelets were critical yesterday and the blood bank had none, the last dose we could get was from St. Lukes of B+ pooled, so they gave her special medicine (same they give to pregnant women with Rh- who carry Rh+ babies) against antibodies so she could tolerate the Rh+ blood. It should last 2-3 months, so at this point we'll take any platelets we can. We really have to support her platelet levels and clotting factors, she is still bleeding, and there is still occasionally quite a lot of blood in her urine (most likely side effect of one of the chemo drugs). They also started giving her an anti-viral for CMV, which she may or may not have, we'll know for sure in a couple of days.

Tuesday, March 23, 2004 6:11 PM CST

I'm sooo tired.. this may have to be a bit shorter. The last couple of days have been not bad. I'm really afraid to get my hopes up but we are very cautiously optimistic. Man I'm so tired I don't know if I can spell anymore.. lol The X-rays have been showing certainly no deterioration at all and some slight improvement day to day, athough today's showed lungs to be a bit more 'wet' than yesterday (most likely due to more fluid retention). There is no one identifiable site of inflammation in the lungs, just blotches of fluid and/or small areas of collapsed tissue that are probably recoverable; even though the cultures haven't grown any bacteria or any of the treatable viruses so far, it is still to early to rule out lung infection (but keep in mind that Sasha already is on three strong antibiotics and two anti-fungals, so they couldn't do much better than that anyway).

Her blood counts keep dropping, white count now being about 170 (compared to 43,000 before), so that's good news, we may have bought some time away from leukemia to take care of this. She still gets two platelet transfusions a day and at least one, sometimes two transfusions of packed red cells, but they seem to hold a little longer than before, so that's good too. There is still blood in urine as side effect of one of the chemo drugs that irritates the bladder, but she is getting medicine for that as well as quite a bit of diuretic to try and flush all the extra fluid she's been retaining. Thankfully her kindeys are being real sports and doing their job very well; but even in the worst case scenario, if we need to give them a break, dialysis is easily available, but I hope it won't come to that.

Sasha had a bit of a fever Sunday night and some more Monday night, but it went away fairly quickly. They stopped Dopamine, the drug that was helping maintain her blood pressure, and she is maintaining the pressure very well on her own. Her oxygen levels dropped a bit today, from 99-100 down to 93-94, but the doctors don't seem to be overly concerned for now and are just watching her closely. Oh, and they also turned down the peep on her ventilator over the last two days, down to 12 on Monday and down to 11 today (we need to get down to about 5). Overall we seem to be taking tiny steps in the right direction, with occasional scare here and there.

Another good news today, after getting GCSF shots for four days my CG-34 levels were finally 67, high enough to harvest the stem cells for transplant, and I spent about five hours on the pheresis machine until they got what they thought may be enough cells. Only about half the cells they get from pheresis are CG-34, so they wanted to get about 20,000,000 cells so they could have 10,000,000 that they needed for Sasha. They'll let me know tonight after counting them up whether they have enough or I need to come back tomorrow for more. The procedure is the same as for giving platelets, just longer, and even though I don't like needles as much as the next guy I've never been so excited or looking forward to it. Doc said I'll feel tired afterwards, which I am, although I'm not sure if it's sleeping on the floor of the ICU rooms I don't know how many nights in a row or stress or anything else. Who cares, half the preparation for transplant is done, now we just need to get Sasha ready!

More later :)

Love,

Yuliya

PS Pete, I'm still gonna say it - you're burning the candle at both ends! LOL :p

Sunday, March 21, 2004 8:09 PM CST

Today is better than yesterday, although considering yesterday it's not saying much. But hey, that's all I can ask for, at least.

Our doc came with some good news this morning. Chemo is definitely working, even though Sasha only got two doses of each instead of three. Her white count continues to drop, which is a double-edged sword but I'll take every bit of good news.. What's good about it is that chemo has finally began to kill the large mass of leukemia cells in her body, which gets leukemia under control for a few days, if not weeks, buys us some time for Sasha to recover and get off the respirator without also worrying about cancer taking over completely, and it hopefully means that the drugs may finally decrease the size of her liver and spleen that are still huge - and that may, in turn, help her breathing by taking of the additional pressure of enlarged organs.

The downside of course is that chemo also killed all her good cells as well and her marrow is not functioning for now. That means that she again has no immune system and is especially susceptible to infections (and now that she has a catheter and three more I.V.s as well as fluid in the lungs there are more places where that can easily happen) and she's not making her own red cells or platelets.

We are continuing with transfusions, yesterday for example she got not one but two bags of red cells, a bag of FFP (plasma that has some clotting factors in it) and two platelet transfusions. Most days she receives at least one, lately two platelet transfusions.

I am forever grateful for everybody who has given Sasha and platelets, she is lucky to have all these sisters and brothers out there.. Kelly (and Pete) have been amazing with rounding up and organizing donors, I know I could not thank them enough but I hope they know how much it meant to us. The bank has been working hard to find us platelets when the designated ones are not available, but it's an uphill battle. Sasha's type (B-) is so rare that is close to impossible to find matching platelets and a lot of times they have to give her pooled units (from several donors, usually larger volume with fewer platelets, and increased risk of reaction because of all the mixed up antibodies from several people) and even gave her A- a few times - but we've been lucky so far and she has not had a reaction in a while.

For now Sasha is fairly stable, her saturation is between 95 and 100100ost of the time really (and they are happy with anything over 92, really, so hey, they're happy I'm happy), and pulse and pressure are looking pretty darn good too. She is heavily sedated and paralyzed with drugs so that she can rest and not fight the respirator for a few days. The respirator pressure (peep rate) is set pretty high right now to help her lungs recover, dry up a bit and fill up the small sections that looked collapsed, but over time they hope to reduce the pressure and sedation to let her breathe with the machine. But again, one day at a time, I don't want to get my hopes too high too soon, but I believe she'll be off the darn thing eventually.

I got my third dose of G-CSF today (granulocite colony stimulating factor, I think..), it's a drug that stimulates your bone marrow to produce more stem cells and throw them into the stream. Tomorrow at 8am they will check my levels and hopefully they'll be high enough for collection tomorrow or Tuesday through apherisis (same process they use for gathering platelets, IV in each arm and they take the out of one, spin and sort it through a machine to separate the stem sells, and put the rest back in). To be honest I've never been so looking forward to injections, shots and pokes as much as I have been to these! They can gather the stem cells and freeze them until Sasha is ready for transplant, which I pray will be soon! I just keep feeling that if only I can get her to transplant and give her some of my stuff everything will be ok.. I know, it's kind of selfish, and I'm not the perfect donor, only 4 of 6 match, but I just have this strong feeling that I've always wanted to protect and care for her so much that parts of me, even on cellular level, will do the same - that is go in and kick some serious cancer butt! I hope so much we can get there..

Sasha's dad is here from Kazakhstan after being away for a few days, I'm glad he made it over. Doctors say she can hear us well so I've been talking to her, reading books, and I know she can hear her dad too and is happy he's there.

Gotta run back to the room, more tomorrow (I hope).

Yuliya

Saturday, March 20, 2004 8:23 PM CST

I don't think I'm afraid of hell any more, because it could not even touch the last two days. Whoever thought watching a stock market is stressful - try watching the little sinus curves and numbers for your baby's pulse, respiration and oxygen for hours at at time, going up in the red and down to almost normal, that would stop your heart more times than you can imagine. It's the most elaborate known, bringing your hopes up many times a day only to crush them quickly.

That pretty much describes our last two days here. I thought the most painful days of my life were already behind, the day I found out about Sasha's diagnosis, the days I suspected she relapsed, the day the biopsy confirmed the relapse, the day we knew chemo did not work and one of the doctors told us outright she will not survive.. but no, it's just getting worse and worse. You don't survive it a day at a time, you survive it a minute, sometimes a second at a time, half the time only because the brain refuses to comprehend just how serious these things you're witnessing are or for that matter how real.

Friday Sasha started having more trouble breathing, even with an oxygen mask. She was really struggling, moaning and grunting with every breath. X-ray of her chest showed fluid in the lungs, possible pneumonia, plus her tummy was so huge it was pushing on the lungs as well. So they gave her a different oxygen mask, a blowby of some sort, that seals around her nose with straps that go around the head and forces pressurized air into the air passages. Uncomfortable does not begin to describe it, but she worked hard and managed to make it work for her, even though it requried a lot of work out of her. She is an amazing fighter, doctors were surprised that she tolerated it even for a few minutes, leave alone over a day that she had it.

Friday late at night breathing became more difficult, she had a little panic attack gasping for air with her mouth and not allowing the pressurized air do its work through the nose.. I calmed her down, and things settled for a little while. Doctors told us that the next step would be to intubate her, and they wanted to avoid that as much as possible because few of these kids who go on the ventilator ever come off. So when the ICU doc wanted to intubate her right there after the episode, I told him to get everything ready but wait, because her oxygen levels stabilized and she was more comfortable. I'm glad I did, as she fell into a nice groove of breathing with the blowby, and her oxygen saturation stayed at a great 100% and respiration rate dropped from 60 breaths a minute down in the 30s. Her ankles were still hurting and she was pressing the PCA button occasionally for some morphine relief and kept asking me to massage her ankles.

All went more or less stable, and at 7am our oncologist came with some good news, that the two doses they managed to give her of the two drugs appear to be working and her white count is dropping (including the cancer cells). But at the same time Sasha began struggling for breath again, pulse in high 180s, respiration high 60s, and they decided (and after a lot of thinking I agreed) that she needed to be intubated soon, without waiting for a respiratory crisis where her brain and other organs could be damaged. Xray of her lungs showed even more fluid and confirmed pneumonia; chemo has damaged her vessels and fluids have been leaking into her body - lungs, abdomens, everywhere.

Mid-day today Sasha was sedated and intubated; procedure went fairly well (i.e. no extra complications), they inserted additional I.V. lines so now she is getting all her meds, fluids and products as soon as she needs them. Unfortunately she just spiked a fever, 101.7 under arm, well over 102, I bet it's the damn pneumonia. She appears to be comfortable, she does not have to fight to breathe anymore, nobody should have to go throught that.

I'm not giving up on hope that they will clear up her lungs and body, let her recover a little and get her off the ventilator in a couple of weeks. She is just so strong..

Saturday, March 20, 2004 11:27 AM CST

Sasha is being intubated, they are putting her on a ventilator. She fought to breathe on her own with a forced oxygen blowby, but after well over a day on it her body was getting tired, her saturation levels kept dropping, there's fluid in her lungs and confirmed pneumonia. They will sedate her, hopefully she won't feel a thing. Docs made it all to clear that these kids rarely get off the ventilator, but hey, Sasha is a fighter, we'll clear up the lungs, get her breathing on her own and do the transplant.

Thursday, March 18, 2004 2:09 PM CST

We've been in the Pediatric Intensive Care Unit at Texas Children's since Wednesday afternoon. We got a great room, actual room instead of a partition behind a curtain, far away from the rest and very quiet (except for all the beeping from a dozen monitors and pumps hooked up to my sweetie..) There is a very nice nurse who seems to take care of only Sasha and one other patient, so Sasha is getting her almost undivided attention.

The first night went surprisingly well. We had a minor issue with a nurse wanting to start another I.V. line on her as the two ports from Sasha's central line were not enough to give her all the meds, fluids and products that were ordered.. I said no way, for one thing you don't want to come even close with anything resembling a needle, especially when she's not feeling so well, but more importantly her platelets were so low, she's covered in bruises, and her veins are notoriously difficult to access that who knows what sort of bleeding issues we'd have with them trying to stick a big needle in her hand. Fortunately the doctor agreed and the nurses worked really hard to figure out a meds schedule that would fit everything more or less on time.

Otherwise, all went very well. Sasha got her first helping of the two chemos at about midnight, and was up partying with me most of the evening all the way till 2 am. We watched the Spirited Away DVD on my work laptop and a bunch of silly cartoons while snacking on little Doritos out of a container that looked like a plastic thermos with a cap. Her ankles were (and still are) really hurting her and I was massaging them most of the evening and the night; even morphine didn't seem to work well until after a few doses. She slept well throught the night every hour and a half or so (boy I've never been so happy watching my child pee lol it's really important for her to be getting her fluids out especially with suspected fluid in the lungs). The respiration got much better too, respiration rate dropped from mid-50s down to low 30s, and heart rate went down too, I'm sure her getting more platelets and red cells this morning helped as well. She demanded a chocolate milkshake from McDonalds, so I'm pretty sure she's feeling well.

The morning counts showed a lot of leukemic cells in the , in the 20s, 70% blasts, but it's possible that most of it are just cells released from the marrow and spleen that have been trapping them all that time. Her tummy seems a little bit smaller, but maybe it's just my wishful thinking.

And then the best part was, our favorite Doctor Lee came in and told us that they may have a few other ideas on how to control the leukemia to make sure she goes into transplant as planned. One involves an antibody, which can give her a pretty good fighting chance of getting the number of cancer cells down before the transplant; the other is a medication they use for ALL (acute lymphocytic leukemia, the more moderate form of leukemia) that they think may work well without any additional side effects because her leukemia cells have certain protein indicators that suggest they may be susceptible to it. In any case, I was thrilled to hear that there may be more things we can do even if this extra large three-day course of chemo doesn't do the trick (although I have a good feeling about it..)

Oh, wanted to say a couple of words about the place I'm writing this from - the Ronald McDonald House at TCH. What an amazing place! They have set up 'family rooms' that look like really nice hotel rooms, with queen beds and showers and everything, for families of patients in ICUs. You can spend the night here, or you can come here between 1 and 5 pm to take a shower and have a nap. It's a real lifesaver as the ICU rooms only have a rather uncomfortable chair for the parent, and it's rare that you can get any sleep there at all (I got luckly last night, curled up at the foot of Sasha's bed and actually got some shut-eye). The RMH has a computer with internet for patient use, a large family area with food, coffee, fridge and most things you need to fix a meal, volunteers round the clock, and they provide this service free. I'm grateful to all these people, I hope they know what a difference they make.

Till later,

Yuliya

Wednesday, March 17, 2004 5:28 PM CST

Up and down we go again. Platelets given this morning held for a little bit at 42 despite the reaction (highest in two weeks), and she perked up a little, had some Godiva icecream with chocolate hearts (her favorite) and two pixie sticks (now how's that for healthy nutrition.. lol) and watched Lion King 1 1/2 for the fifteenth time. Her oxygen saturation level is better without the mask, but she doesn't want to part with the oxygen mask, it must be making it easier to breathe.

However, the doctors think that the disease is progressing too quickly and the mild chemo is not doing the trick. They are planning to give her much stronger chemo, VP16 and something else she hasn't tried before. So, we are moving down to ICU tonight for better observation while she is getting the strong stuff over the next three days.

Wednesday, March 17, 2004 12:24 AM CST

Yesterday (Tuesday) the rollercoaster continued. Sasha received platelets the night before that brought her levels from 3 to a whopping 6 (normal is 150) - so more platelets in the morning, followed by red blood cells. She livened up a little after receiving blood, but that was short lived, just like the blood itself, which brought her levels up to 8.5 (normal 11) but dropped within a couple of hours back down to 5.8 or so. Seems like all the blood products they are giving her are going into a black hole. Apparently her spleen is mistaking the blood cells for hostile cells and is trapping everything.. it is huge, her tummy is just enormous, she can barely sit up. She was having a hard time breathing (with hemoglobin being so low she is anemic, not enough blood to carry oxygen so the respiration and heart rates are pretty high), short of breath with any even minor physical effort.

Her white count doubled in a day, going from about 8 to almost 18, most of it being leukemic cells; there are more leukemic cells trapped in her spleen and other places in addition to just peripheral blood. They've started her again on more "mild" chemo, Cytoxin, ARA-C (four days 12 dozes each), Vincristin (one doze she already got on Monday) and Prednisone (pills 12mg 3 times a day), same protocol they tried the week before last that seemed to have contained her disease somewhat. This is just bridge chemotherapy, just to control her leukemia to get her to transplant in two weeks.

This morning she got more platelets and when she got up to go to the bathroom she couldn't breathe and the docs put her on oxygen as her oxygen saturation levels dropped. Haven't seen her counts for today yet, but they took a chest xray, preliminarily looks like there is some fluid in her lungs, hopefully some diuretic (Lasix) will help with that. She's been sleeping all the time.

The docs are planning to hook her up to a PCA (patient/parent controlled analgesia) with morphin; even though she hasn't complained of pain in the last few days, they think she needs it and it may alleviate some discomfort. They are also additing TPN (total parenteral nutrition aka food in an I.V. bag).

Between morphin, demorol that she gets with her Amphoteracine B, benadryl several times a day as premedication for blood products, and TPN my fear is that she won't feel like waking up at all now. For the most part she sleeps all the time already except for a couple of precious hours in a day, usually late at night, when she is back to her old lovely self. I hope they won't take that away from us, but if that's what it takes to keep her comfortable and pain free we'll just do what we have to do.

I'm going to get GSC-F injections Friday, Saturday and Sunday to produce more stem cells, and they will try to collect enough Monday and/or Tuesday for the transplant and freeze them until she is ready. Unfortunately there still is no definitive plan as to the timing of transplant. It's a catch-22 almost, they want to get Sasha's disease more under contol before she goes in to increase her chances, but at the same time they are really struggling with controlling the disease and the more time goes by before the transplant the worse she seems to be doing; although doctors are trying to assure me that it's not bad, just observing her it seems that things are not improving at all. She does not get out of bed anymore, not even to go to the bathroom, she doesn't even want to watch TV, she hasn't wanted me to read a book to her in the longest time, forget about going to the playroom or around the hallway.. Hopefully it's just all the chemicals they keep pumping into her.

That's ok, we'll get through this. We don't have an option, now, do we? She's the strongest human being I have ever met, and her spirit remains strong no matter what. Maybe tomorrow the rollercoaster will bring us some good news.

Later,

Yuliya

Monday, March 15, 2004 9:32 PM CST

Looks like I can add entries from my Blackberry - ahh, gotta love modern technology, this makes things even easier. Today was a typical rollercoaster day. Could not sleep the night before, finally stumbled in Sasha's bedroom again at 6am for Voriconazol infusion. 8am clinic appointment, can't seem to wake her up, she's cranky, everything hurts, can't get comfy. Clinic shows her platelets at 1, record low, explains all the bruising. Back to the hospital we go, room 917 this time.

Monday, March 15, 2004 9:42 PM CST

To be honest, I'm almost glad she's in the hospital for now, she really didn't look well this morning. A bump on a belt buckle caused a huge purple bruise and bump.. But after platelets she got a unit of red cells, and it was like someone poured life into her. She wakes up, talks, demands food, plays a little.. Still short of breath and tummy terribly swollen, but what a turnaround from morning when she wouldn't even respond except for occasional nods.. Up and down we go, hopefully more up this time.

Monday, March 15, 2004 9:42 PM CST

Monday, March 15, 2004 9:32 PM CST

Monday, March 15, 2004 0:34 AM CST

A wonderful nurse at the Texas Children's Hospital told us about Caring Bridge. Wow, this should really make things easier on me.. :) I have a constant sense of nagging guilt for not responding to all my emails and phone calls.. But I want you to know that even though there is a lot we have to deal with day to day and you may not hear from us for a long periods at a time, we know that you are here with us and we are grateful for the friends and family we have been blessed with. I never knew just how many friends we had until we were in real need. Thank you. This page is for you.

Yuliya

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