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"For I know the plans I have for you," declares the Lord, "plans to prosper you, plans to give you HOPE and a future." Jeremiah 29:11
ANDREW'S STORY
Andrew was born to Brian and Ellen Bowman on June 2, 1996. At 16 months of age Andrew was diagnosed on October 27, 1997, with Mucopolysacchridoses Disorder III-A, Sanfilippo Syndrome. MPSIII-A causes severe mental and physical regression and early death, 10-15 years. Brian and Ellen, who both worked in Special Education, pushed Andrew to learn as much he could, as quickly as he could, while praying for a cure for the horrible disease that possessed their son's body. Quickly, Andrew made his parents proud by scoring a 74dq, therefore, keeping up with his peers. Andrew fought the effects of MPSIII single handedly by working hard. He became fluent in sign language, reading by picture symbols and could hit a 10 ring with a bow and arrow all at the age of four.
After several years of praying, The Bowman's found “a fraction of a hope” for their son on March 1, 200l with Dr. Joanne Kurtzberg at Duke University Medical Center. Knowing that the window of opportunity was closing, a few months later, on May 18, 2001, Andrew was the second child and the oldest with MPSIII to under go an experimental Unrelated Umbilical Cord Blood Transplant at Duke University Medical Center in Durham, NC, in hopes of stopping the progression of the disease. Because of this courageous step, Andrew has helped pioneer hope for many children through out the world.
In May 2005, Andrew and his family returned to Durham, NC for Andrew's four year follow up visit. At this visit it was determined the Sanfilippo Disorder had not been stopped. On Friday, May 13, 2005, all hope was lost when the news was delivered by Dr. Kurtzberg that Andrew’s brain continues to show progression of the disease. After developmental testing, it was revealed that Andrew had lost 2 years and 3 months of cognitive skills over time frame of one and a half years. The Bowman’s left Durham, NC knowing that they had done everything possible to save their son’s life. They continue to pray that their efforts would one day help another child and their family in finding success in stopping the progression of MPSIII.
To know one’s dismay, Andrew's journey hasn't been an easy one. However, Andrew’s Journey is not over. His parents will continue to fight the heartache as this disease conquers their son’s body over the next several years. Andrew has endured many complications, surgeries, test and setbacks. He remains on several medications and continues to make frequent trips to his physicians in North Carolina, as well as, in his home state of Alabama. He undergoes monthly treatments as his local hospital in order to keep him as healthy as possible. He receives daily, OT, PT and speech therapy to work towards maintaining and hopefully regain skills lost over the last four years.
Andrew's Hope didn’t come without a cost. The new stem cells Andrew needed to replace his present bone marrow kept him and his family in North Carolina for 8 months. The cost of the procedure alone exceeded $600,000. In addition to the costly procedure, Andrew has had several medical complications, including emergency brain surgery and VP shunt placement, due to post transplant treatment and the effects of the disease, blood infections, replacement of infusa ports and central lines. Thus, resulting in costly medical bills and lengthy out of town living expenses, as well as, travel expenses. The days, weeks and months The Bowman's have spent in Durham, NC totaled more than a year over the last several years.
If you would like to help the Bowman Family you may make tax deductible donations for Andrew to:
Pennies for Nicoll Foundation
PO Box 60843
Colorado Springs, CO 80906
Make Checks payable to Pennies for Nicoll Foundation.
Write Andrew Bowman in the memo of your check.
Your prayers of strength and wisdom are greatly needed. The Bowman’s face a future of uncertainty and possibly many obstacles while they continue to care for Andrew. Pray for their joy to be restored, as well as, their hope and future for their son.
“For I know the plans I have for you declares the Lord, “plans to prosper you, not to harm you. Plans to give you hope and a future.” Jeremiah 29:11
Journal
Thursday, January 10, 2008 7:31 PM CST Hi all. This is Ellen's friend, Carrie. She wanted me to update you all about Prince Andrew. He has had a rough few weeks, so here is all the info. Please keep the Bowmans in your prayers!
12/17/07
Very quick update:
Tuesday of last week, Andrew’s doctor called and told us that his EVB blood work (for Mono) was still elevated. Our next step is to do an abdominal CT scan. After a waiting and fighting with insurance, we are going this morning for the CT scan. Andrew cried all day yesterday. We’re hoping that something will show up. The CT tech called this morning (she’s wonderful); we were unaware that he will have IV contrast in addition to the barium contrast. Because Andrew is Andrew… we’re having to move his CT scan to the hospital instead of the outpatient CT scanner. All this normally this would “wig” me out, but our former study school teacher will the nurse helping with Andrew’s CT Scan at the hospital. He’s awesome too. Brian was able to take off work and… between Lamar and Brian, they will make sure the best is done for Andrew. We’re hoping to be able to use his Infusa Port for his IV access and that the Ativan will help relax him in order to get a good film. We will take all our needles and such... oddly you might think, but sometimes our wonderful hospital does not have Andrew's gauge of needles for his port in stock. If we are unable to use the port, then they'll have put in an IV. Which is not an easy task. If you get this before 10 am please send up a prayer for Andrew. <>
12/22/07
I know many of you were thinking that I fell off the face of the Earth. Well, I did. And… the climb back up was a doozy. For starters, Andrew’s CT scan showed that his bowels are backed up into his small intestines. Yeah, pretty bad huh? What do we do? Lots of crap… (smile). It’s probably more information than you want. Several days ago, we started a regimen to help clear him out. Sadly, it is not helping liked they had hoped. Brian talked to Andrew’s pediatrician today. She added few things and asked us to visit the office on Christmas Eve (Monday) to get an x-ray. Because Andrew is in so much pain, Brian is taking off work tomorrow. Praise God for sick days.
Many of you have asked about the twins. They are improving every day. They still have many issues to overcome, but overall, we see them improving daily. Manda is sleeping through the night without night terrors. She is also potty trained and is learning to ask for things instead of screaming. “The Queen” still likes to be in control. Matt is waking up a few times during the night, but his night terrors are much better. Potty training is slow for him, but is impressed with himself when he succeeds. He still thinks his charming smile will get him out of trouble. And… honestly, it does sometimes. The last several days, we have had their older brother, Andrew 11yrs old, visiting. They have really enjoyed their time together. It has been a challenge distinguishing between the two “Andrews” and everyone has had fun with it. He will go home to his aunt’s house tomorrow and then visit again sometime before school starts in January.
Until next time… keep praying for Andrew.
HAVE A VERY MERRY CHRISTMAS!--<>
12/26/07
Quick update:
Christmas morning Andrew had a big seizure (jerking, stiffness, twisting, and stopped breathing) that lasted a several minutes. We got him in bed, gave him some meds and let him rest. This was the first really big one that we've ever seen. About four hours later, he was stirring. We got him out of bed to finish opening up Christmas gifts. We had finished up and I started with Christmas lunch while he slept on the sofa. A few minutes later, Brian yelled for the oxygen because Andrew as having another big seizure. We gave him a medication to stop the seizure and he has been out (asleep) ever since. He missed a dose of his seizure medication Christmas Eve. Also, we think that due to the laxatives he been taking, his body might not have absorbed enough of his medication. We talked with his pediatrician and his neurologist. If he is not better by morning, we will do a CT scan of his head to see if there is a malfunction with his shunt or other issues. I’ve been able to get him awake enough to give him his medications and to get him to drink a little. The RN in Brian is a little more concern than I am. He has been doing a lot of research on seizures and medications during his down time at work. Personally, I enjoy staying stupid. I have to say, I did not want to spend Christmas morning hearing Brian say, "Breath Andrew, come on buddy breath!" And honestly... now, I don’t like looking at his life-less body. It is our hope that he still has the effects of the medication in his system and he’ll be bright and cheerful in the morning. So, before you go to bed tonight, say a prayer for Prince Andrew. <>
12/27/07
Quick update:
I woke Andrew up around 9 a.m. and put him in the bathtub. He is doing better (awake and moving), but is still sluggish. He’s not able to walk or stand on his own. But, he did sit at the table and eat breakfast and lunch. Right now, he is asleep in his beanbag wrapped in an electric throw blanket. We will hold off on his CT scan for now, since he is showing improvements. The seizures and meds just took a toll on his body. If he has another seizure, we’ll call his doctors and schedule a CT scan. His pediatrician will do an x-ray on his abdomen in a few days if his bowels don’t start moving again. Everything is a juggle when it comes to Prince Andrew. Brian will be off work until Monday… thank God again, for SICK DAYS!!! It's nice not to have to fly solo during times like these. I can't thank God enough for Brian and Simon, both. They are wonderful. I have to brag on Simon the Great, through this all, he's offered several times to sit and hold Andrew. He's been there to entertain the twins. Matt, my sensitive little one, has brought Andrew toys to hold. Manda, well... I think she tries to stimulate Andrew by standing in front of him and scream and cry. I'm waiting for him to feel good to sit up and push her out of his way. Last night, she did offer to rub his tummy, but her hands on him, just made him fuss even more. She's all girl and Andrew is the big brother, regardless of how he feels. Thanks for the prayers! And the e-mails. Until next time, keep praying... <>
1/3/08
Update:
Today Andrew had a hospital visit to have his infusa port flushed and petamodine treatment. Andrew’s pediatrician ordered labs, an abdominal x-ray and urine test. Andrew screamed, cried and moaned the entire time. While Brian wrestled with Andrew at the hospital, the twins and I sent Simon and Andrew (the twins older brother) off to a church youth retreat. The twins and I arrived to the hospital just at the peek of Andrew’s unhappiness and just in time to give Brian a hand… and lunch. Upon seeing the nurses in masks as they finished drawing blood from Andrew’s port and hearing Andrew crying, Amanda Grace said, “What happen to him? We need to help him?” I thought, Oh, honey… if only we could. If only it was that easy. We headed home to wait for our doctor to call with the results from the test. I have to say that we are blessed to have some wonderful nurses and doctors. Our first phone call came to tell us that they ordered some additional meds and Dr. Brown would be calling. The second phone call came to say that they scheduled us an appointment with a GI specialist at Children’s Hospital for next week. The third phone call came from Andrew’s doctor telling us that his lab work showed some abnormal white blood cells. Since this concerns her, tomorrow she will ask the Pathologist to view the slides again. The other labs and test came back normal. She is going to write a detail letter to the GI specialist. She will forward his CT scans, labs and x-ray reports to GI specialist and to Duke, since his blood work may indicate the Mono is still active. In the meantime, Andrew is still uncomfortable. Trying to get his bowels regular and “normal” is a task we have yet to accomplish. So… please be in prayer for Prince Andrew.
Until next time…Keep Praying,
Ellen
1/8/08
Andrew’s Prayer Request:
All I can say is… I feel as though I have been living a nightmare for the last 10 years. I keep pinching myself, trying to wake up. Long story short… we saw the GI specialist at Children’s in Birmingham today. We thought we would come out with a prescription for laxatives and a possible date for an endoscopy, instead our GI specialist is concerned that Andrew has “Prograf induced Lymphoma”. (Prograf is a drug Andrew is taking to prevent GVHD, which lowers his immune system… which could have resulted in him getting mono.) Dr. Saeed has heard of a patient (or had a patient) who was taking prograf for a kidney transplant and developed lymphoma. He, therefore, wants to rule this out for Andrew. Andrew has lost 15 pounds in 6 months, his A-typical white cells continue to be elevated, and his CT scan showed enlarged lymph nodes. Our day consisted of several phone calls back and forth from Duke, his pediatrician, his neurologist and the pharmacy. (We have to most amazing team of professionals on Andrew's side! Tears comes to my eyes to think of how much they each care about Andrew... we're blessed!) The story doesn’t end there… Andrew had another ‘grand-mal’ seizure last night. Of course, this is a concern. While at Children’s today, Andrew’s neurologist ordered a CT of his head. In the meantime, we’re waiting for the results of Andrew’s CT scan, additional blood work that Duke wants and for Children’s radiologist to “re-read” Andrew’s abdominal CT Scan. As far as the rest of Andrew’s GI visit, he will have additional test next week. Depending on what that test shows, Dr. Saeed may do an endoscopy or an advance test where Andrew will swallow a small camera type capsule and it will transmit films as it pass through this GI Track. As far as Andrew’s seizures, Dr. Rutledge changed his medication. We will wait on the report from his CT scan and the result of his labs to see if he in fact has lymphoma. OUR PRAYER is that all the above is because the Mono is still active (and JUST Mono). The weird thing is that Mono can be a precursor for lymphoma. Tomorrow, Brian will take Andrew to our local hospital to have boatload of labs can be drawn. Once we know what direction this is going, we will lay all our options on the table to do the very best for Andrew. Since things are unknown, and we, too are clueless, have chosen not discussed this with Simon. He's been through enough and does not need this burden. If you happen to talk to him, please know we are choosing not to discuss this with him, at this time. While we wait, … please be in prayer for Prince Andrew. <>
1/10/08
Latest Update:
There is not much to add, other than Andrew’s CT scan did not show a bleed or any shunt malfunctions. It did show the progression of MPSIII in the form of atrophy. At this point, we do not have any blood work back in order to rule out Lymphoma. It will take several days. We have a list of “IF’s” and will cross each off once we know what direction this is going. We have a super team of professionals who are double-checking, x-rays, labs and consulting other professionals. Andrew’s pediatrician is having three different hospitals read his abdominal CT scans. The radiologist, neurologist, and neurosurgeon are reviewing Andrew’s CT scan of his head. When Brian talked with one of the BMT doctors he works with on UAB’s BMT Unit, he said that if he had prograf induced lymphoma, then he would want Dr. K as his doctor. IF he thinks she is good, he needs to meet her NP! We feel comfortable with the professionals we have and respect their opinions. Someone ask what is the best case and worse case scenario. Best case—Andrew’s body is fighting this off himself. Worse case— He will have a bad form of Lymphoma. “IF” the labs come back positive, we will return to Duke so we can lay ALL our options on the table. In the meantime, we will continue to work through Andrew’s bowel issues and see his GI specialist next week. We will continue to manage his seizures and change his seizure medications. We will continue to pray and ask you to do the same. Thanks for the phone calls, e-mails and prayers. <>
NEED-- We need an LPN or RN. They would work through a nursing company and provide 13 hours a week for respite. If you know of one in our area that would be interested, please let us know.
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