We are 33 days post transplant and there are a lot of changes for Mr. William! His doctors are saying he will be discharged NEXT WEEK!! It seemed to take forever for the stem cells to engraft, but once they did time has flown by! We've been here since January 2, and we are soooo ready to go. He is getting one set of his central lines removed on Monday; he will be discharged with one set remaining until we go home to Utah in 2 months or so. William is such a fighter, I don't know how I could love him anymore and then I do!! Being a mommy is absolutely fantastically amazing. ❤❤ Thank you from the bottom of our hearts for all of your prayers, thoughts and heartwarming gifts. We couldn't do what we do without your support! I was telling Robert the other day how difficult it is to see William in his hospital room day after day, then he reminded me that we have so many wonderful people that love and care for us that are carrying us through this crazy wild journey. We love you all!!!! When we get out of this darn (but wonderful!) hospital I think I'm going to write a book!
Xo, The Branches 👪
Thursday, February 26, 2015
Saturday, February 21, 2015
30 days post transplant
Sweet baby is getting so big! We are 30 days post transplant and we are on the road to getting discharged, probably in 2 maybe 3 weeks. We will stay in the Ronald McDonald House for 2-3 months after we are discharged so William can be close to his doctors and we can make sure he's ready before we head back to Utah (and have all the adaptive equipment in hand). Papa Ron and Gogo Marcia got here the day Megan and Sara left. We are almost completely off of needing pain medication, he isn't needing blood or platelets as often, and he's much more alert. I missed him; he had been "out of it" when on pain meds and sedatives to keep him comfortable, its nice to see his eyes shine once again!! He is moving his arms and legs a little bit (which gives us a few more options when he is ready for a communication device), and his eyes speak louder than any words could. He is eating a tiny bit orally but he will get all of his needed nutrition through his g-tube indefinitely. I hope he can take food orally (swallowing is affected by Krabbe Disease being a motor skill) because eating is delightful!! 😊
We are not sure what William will be able/not able to do at this point. The doctors are certain he will never walk, possibly never talk and will need care 24/7 indefinitely. Robert and I are holding very high standards for our little boy and will never give up trying to teach him those things and not letting the doctors tell us what he can and cannot do. Simple as that. I did that while I was a classroom teacher, too; you are going to try your hardest and never give up, regardless of what a doctor or specialist said you can or cannot do.
William will keep his vision, hearing and receptive language skills as a result of the transplant. Life expectancy is still a little gray; however, of the transplants that have been completed, all are still living the oldest being 18 years old.
William's doctors and nurses rock!!!!
Our motto: never give up, especially on the ones you love. EVER.
We are not sure what William will be able/not able to do at this point. The doctors are certain he will never walk, possibly never talk and will need care 24/7 indefinitely. Robert and I are holding very high standards for our little boy and will never give up trying to teach him those things and not letting the doctors tell us what he can and cannot do. Simple as that. I did that while I was a classroom teacher, too; you are going to try your hardest and never give up, regardless of what a doctor or specialist said you can or cannot do.
William will keep his vision, hearing and receptive language skills as a result of the transplant. Life expectancy is still a little gray; however, of the transplants that have been completed, all are still living the oldest being 18 years old.
William's doctors and nurses rock!!!!
Our motto: never give up, especially on the ones you love. EVER.
Friday, February 20, 2015
Fundraiser
"William's Warriors" have started a fundraiser via Godsfeet; $6.00 from each purchase goes to William's medical expenses. Check out the link below!
http://www.godfeet.com/featuredfamilies/williams-way/
http://www.godfeet.com/featuredfamilies/williams-way/
Tuesday, February 17, 2015
well in Pittsburgh!
Hi, folks!
Everything is going well in Pittsburgh. William is no longer neutropenic (he can now fight off infections on his own), his white blood cell counts are growing, he is tolerating some feeds through his g-tube (he ate a little bit of sweet potatoes yesterday!) and is getting loved on by his Aunties Sara Hoffman andMegan Egerton Hirko! They have been such a huge help being my extra hands for the past 5 days which has allowed me to get more sleep than I have been able to get since William got sick! They have the "mommy touch." 💕 I also haven't laughed this hard in a long long time.
William still has some neck control (pretty much the same as before we got here 6 weeks ago), kicks his legs some and moves his arms a little. Now that he's not on a continuous pain medication, he is focusing on books and showing interest in colors and sounds.
What needs to happen before we are discharged from hospital:
*William must be able to tolerate bolus feeds through his g-tube (how much a bottle-fed baby would drink in 30-60 minutes every 3-4 hours);
*He must not need a platelet or blood transfusion (he is needing one at least every other day right now);
*He will get another spinal tap to see how much of the donor blood he has versus his own blood (his blood type will change to the donor blood type, eventually);
*He will get one set of his central lines removed, but will be discharged keeping the other set (before we go back to Utah, he will have all central lines removed).
There are several other smaller issues that need to be stable before William leaves the hospital and lives with us in the Ronald McDonald House for a few more months. We are still taking it day by day, sometimes hour by hour for William to show us what he needs. Thank you for all of the thoughts and prayers! I love checking the mail everyday for New surprises for William.
XO, The Branches
Thursday, February 12, 2015
Day 2 Engraftment
Hello from freezing Pittsburgh!
William had a good day today. They have stopped his continuous pain medication and just have it on an "as needed" button. He received platelets again today (second day in a row). His doctors say that is normal during the engraftment stage to need several platelet and blood transfusions as the body heals. His white blood cell count continues to rise which means the donor stem cells are multiplying where they are needed.
Did you know that Hunter's Hope advocates screening for six Lysosomal Storage Disorders (LSDs) in states across the U.S., including Krabbe, Pompe, Gaucher, Niemann-Pick, Fabry and Hurler Syndrome? Currently, Missouri and New York are the only states that screen for these diseases. If you haven't already, I highly urge you to fill out the form, it only takes a few minutes (literally a few, the form is made for you) to send an email to your state's representatives. I found out that Alabama (where William was born) has turned down adding this to the newborn screening for 2 years in a row. What if they would've said yes...what if.
William had a good day today. They have stopped his continuous pain medication and just have it on an "as needed" button. He received platelets again today (second day in a row). His doctors say that is normal during the engraftment stage to need several platelet and blood transfusions as the body heals. His white blood cell count continues to rise which means the donor stem cells are multiplying where they are needed.
Did you know that Hunter's Hope advocates screening for six Lysosomal Storage Disorders (LSDs) in states across the U.S., including Krabbe, Pompe, Gaucher, Niemann-Pick, Fabry and Hurler Syndrome? Currently, Missouri and New York are the only states that screen for these diseases. If you haven't already, I highly urge you to fill out the form, it only takes a few minutes (literally a few, the form is made for you) to send an email to your state's representatives. I found out that Alabama (where William was born) has turned down adding this to the newborn screening for 2 years in a row. What if they would've said yes...what if.
Here is the link to the form, please take a minute.
https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111
https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111
Wednesday, February 11, 2015
day 1 of engraftment
Day 20 post transplant and day 1 of engraftment. Yay! William's white cell counts continue to grow and he is now slowly being weaned from his pain medication and sedative. We decided to try his feeds again (clear Pedialyte to begin with) through his g-tube, and he has started showing interest again in his pacifier. One day, one moment at a time. The nurses and doctors are doing an amazing job with William and Grandma Carolyn has logged some serious hours in William's hospital room. And for that I am ever so grateful!
Thank you to everyone praying and sending William positive energy and vibes. The power of prayer is clearly evident and please keep praying for William as his body slowly heals from this process.
Love, Robert, Abbey and William
Thank you to everyone praying and sending William positive energy and vibes. The power of prayer is clearly evident and please keep praying for William as his body slowly heals from this process.
Love, Robert, Abbey and William
Tuesday, February 10, 2015
19 days post transplant
Good afternoon, friends and family of our little boy!
We are 19 days post cord blood transplant and William's white blood cell counts continue to grow. Medically, tomorrow they will call this "stem cell engraftment" because he would of had 3 consecutive days of cell growth (this should happen tomorrow, anyway). Engraftment means the transplanted cells (cord blood stem cells) are growing within the host (William.) Look at me talking all fancy!
William will continue to be in isolation for another 6 weeks or more. He hasn't been able to leave his hospital room since January 2nd, when they started to prepare him for chemotherapy. There is a big window in his hospital room and he loves looking outside. I cannot wait to be able to take him with us camping and other outdoor adventures. I'm actually itching to do a fair share myself; I haven't kayaked since before my pregnant belly got too big to fit in my boat. There are several rivers around here and I have already been to the local REI store putting "feelers" out to let people know we'd like to rent/borrow some gear. So if anyone knows anyone that has kayaking gear around here, let me know. One guy at REI said we could float in the river and watch the Pittsburgh Pirates play at their stadium. Sounds like a winner to me.
After we are discharged from the hospital in 6 weeks or so, we will have to stay local for up to 3 additional months as William will need to be within arm's reach of his doctors. We are planning on staying at the Ronald McDonald House (its a quaint one bedroom apartment) for that time. Robert continues to travel to Salt Lake City weekly for his job. He's not a big fan of leaving us behind in Pittsburgh.
William will continue to need transfusions, either blood or platelets for a little while. He is getting a blood transfusion today (his 5th since we've been here). He got platelets yesterday. All normal and expected as his body begins to heal.
He rests a lot and he doesn't move on his own very much. PT and OT come in weekly to help stretch him and keep him moving as much as he can tolerate. He does move his limbs on his own sometimes, but not very much. He moves his arms a lot more than his legs and can still give me a "high five," although he really has to think about it before he does. He never gives up. He is so incredibly strong-willed. Even with the transplant, his motor skills with continue to decline (its called peripheral nerve damage, all part of the evil Krabbe Disease that cannot be cured, but hopefully the deterioration will slow down dramatically because of transplant). However, because of the transplant, he should keep his perfect vision, hearing and receptive language skills (ability to learn and comprehend what is going on around him), whereas without the transplant he would start to lose at 12 months old. William is only the 25th baby to undergo this type of chemo regimen pre-transplant (they have done 200 total cord blood transplants), so his future is pretty much unwritten. We do know he will have VERY limited motor skills and will need a special wheel chair (when they are children its called a KidKart). He was measured and sized for one last week, so he will have his own custom-made chair in a few weeks. He will need a lot of assistive devices in the future; Dr. Escolar's team will help us in the future with equipment. I cannot fathom what we will need post-hospital stay, but we have a lot of help getting our ducks in a row.
William is not running fevers, his heart rate and blood pressure are all normal.
That's it in the nutshell. Everyone has been so supportive, I cannot put into words how thankful we are to have hugs coming from all over. We keep moving forward and letting our little man dictate what he needs. He's a such a sweet strong little fighter.
Robert and I are hanging in there taking it day by day. There are more emotionally strenuous days than others, but we have family and friends that are giving us much needed "breathers." Grandma Carolyn has been with us the past few weeks after my parents Ron and Marcia left (they will be back soon). I'm looking forward to my good friends Megan and Sara coming to visit this week! My sister Ronna and brother Adam are both planning visits, too.
Love, The Branches
Just an FYI - I was in the same town as Garth Brooks this past weekend! I didn't see him, though!!
We are 19 days post cord blood transplant and William's white blood cell counts continue to grow. Medically, tomorrow they will call this "stem cell engraftment" because he would of had 3 consecutive days of cell growth (this should happen tomorrow, anyway). Engraftment means the transplanted cells (cord blood stem cells) are growing within the host (William.) Look at me talking all fancy!
William will continue to be in isolation for another 6 weeks or more. He hasn't been able to leave his hospital room since January 2nd, when they started to prepare him for chemotherapy. There is a big window in his hospital room and he loves looking outside. I cannot wait to be able to take him with us camping and other outdoor adventures. I'm actually itching to do a fair share myself; I haven't kayaked since before my pregnant belly got too big to fit in my boat. There are several rivers around here and I have already been to the local REI store putting "feelers" out to let people know we'd like to rent/borrow some gear. So if anyone knows anyone that has kayaking gear around here, let me know. One guy at REI said we could float in the river and watch the Pittsburgh Pirates play at their stadium. Sounds like a winner to me.
After we are discharged from the hospital in 6 weeks or so, we will have to stay local for up to 3 additional months as William will need to be within arm's reach of his doctors. We are planning on staying at the Ronald McDonald House (its a quaint one bedroom apartment) for that time. Robert continues to travel to Salt Lake City weekly for his job. He's not a big fan of leaving us behind in Pittsburgh.
William will continue to need transfusions, either blood or platelets for a little while. He is getting a blood transfusion today (his 5th since we've been here). He got platelets yesterday. All normal and expected as his body begins to heal.
He rests a lot and he doesn't move on his own very much. PT and OT come in weekly to help stretch him and keep him moving as much as he can tolerate. He does move his limbs on his own sometimes, but not very much. He moves his arms a lot more than his legs and can still give me a "high five," although he really has to think about it before he does. He never gives up. He is so incredibly strong-willed. Even with the transplant, his motor skills with continue to decline (its called peripheral nerve damage, all part of the evil Krabbe Disease that cannot be cured, but hopefully the deterioration will slow down dramatically because of transplant). However, because of the transplant, he should keep his perfect vision, hearing and receptive language skills (ability to learn and comprehend what is going on around him), whereas without the transplant he would start to lose at 12 months old. William is only the 25th baby to undergo this type of chemo regimen pre-transplant (they have done 200 total cord blood transplants), so his future is pretty much unwritten. We do know he will have VERY limited motor skills and will need a special wheel chair (when they are children its called a KidKart). He was measured and sized for one last week, so he will have his own custom-made chair in a few weeks. He will need a lot of assistive devices in the future; Dr. Escolar's team will help us in the future with equipment. I cannot fathom what we will need post-hospital stay, but we have a lot of help getting our ducks in a row.
William is not running fevers, his heart rate and blood pressure are all normal.
That's it in the nutshell. Everyone has been so supportive, I cannot put into words how thankful we are to have hugs coming from all over. We keep moving forward and letting our little man dictate what he needs. He's a such a sweet strong little fighter.
Robert and I are hanging in there taking it day by day. There are more emotionally strenuous days than others, but we have family and friends that are giving us much needed "breathers." Grandma Carolyn has been with us the past few weeks after my parents Ron and Marcia left (they will be back soon). I'm looking forward to my good friends Megan and Sara coming to visit this week! My sister Ronna and brother Adam are both planning visits, too.
Love, The Branches
Just an FYI - I was in the same town as Garth Brooks this past weekend! I didn't see him, though!!
Sunday, February 8, 2015
Saturday, February 7, 2015
Newborn screening form
Letter to your state representatives to ask for Krabbe to be added to the newborn screening:
https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111
https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111
16 days post transplant
Hello friends of William near and far!
We are currently 16 days post transplant. It takes, on average, 28 days (sigh) for the white blood count to show up on his blood work. We were hoping that they would start to show up after about a week post transplant due to William's current status (his mouth sores were healing on their own), but it is taking a bit longer. Nothing out of the ordinary according to William's care team, but we were really hoping it would be sooner than later for our peace of mind and for a quick(ish) recovery. We are right where we should be based on averages.
Just a little FYI on what the blood draw actually measures: currently, William's white blood count is measuring <300 mm^3. His doctor on the BMT (Bone Marrow Transplant) team looked at his blood work microscopically and it actually displayed immature cells, just not enough to show up on the WBC. The reason his mucositis is healing on its own (mouth sores, GI sores), is because the few white blood cells that are growing are going to the areas that are needed the most. I'm sorry for my laymen ability to explain pediatric nursing, but this is how I processed it all.
He currently is on continuous medication to help a variety of things, and his pain, infections and overall comfort seem to be under control. Grandma Carolyn has been a tremendous help for us; Robert and I have been able to escape the confinement of the hospital and tour the town now and then (Pittsburgh is amazing!) Robert continues to fly to Salt Lake City from Pittsburgh for work weekly. Our friends' and families' generosity donating sky miles has covered his flights for the month of February. We are going to be reevaluating William's condition in a few weeks to see how March thereafter needs to be approached with Robert's travel plans.
Sara Hoffman and Megan Egerton Hirko are going to come visit next week! Yay!!
We have received numerous gifts, care packages and decor for William's hospital room. The nurses and doctors are amazed by the amount of love and support that our sweet boy has. We are truly thankful for everything everyone has done for us. This has been a crazy ride and will continue to be and we couldn't do it without the support.
Love, The Branches
We are currently 16 days post transplant. It takes, on average, 28 days (sigh) for the white blood count to show up on his blood work. We were hoping that they would start to show up after about a week post transplant due to William's current status (his mouth sores were healing on their own), but it is taking a bit longer. Nothing out of the ordinary according to William's care team, but we were really hoping it would be sooner than later for our peace of mind and for a quick(ish) recovery. We are right where we should be based on averages.
Just a little FYI on what the blood draw actually measures: currently, William's white blood count is measuring <300 mm^3. His doctor on the BMT (Bone Marrow Transplant) team looked at his blood work microscopically and it actually displayed immature cells, just not enough to show up on the WBC. The reason his mucositis is healing on its own (mouth sores, GI sores), is because the few white blood cells that are growing are going to the areas that are needed the most. I'm sorry for my laymen ability to explain pediatric nursing, but this is how I processed it all.
He currently is on continuous medication to help a variety of things, and his pain, infections and overall comfort seem to be under control. Grandma Carolyn has been a tremendous help for us; Robert and I have been able to escape the confinement of the hospital and tour the town now and then (Pittsburgh is amazing!) Robert continues to fly to Salt Lake City from Pittsburgh for work weekly. Our friends' and families' generosity donating sky miles has covered his flights for the month of February. We are going to be reevaluating William's condition in a few weeks to see how March thereafter needs to be approached with Robert's travel plans.
Sara Hoffman and Megan Egerton Hirko are going to come visit next week! Yay!!
We have received numerous gifts, care packages and decor for William's hospital room. The nurses and doctors are amazed by the amount of love and support that our sweet boy has. We are truly thankful for everything everyone has done for us. This has been a crazy ride and will continue to be and we couldn't do it without the support.
Love, The Branches
Wednesday, February 4, 2015
Day 12
Twelve days post transplant. William is doing as well as expected, and we are waiting for his white cell counts to rise (still at <0.3). He received platelets today, third time this past month and his pain seems to be under control. He received blood yesterday, fourth time in the past month. All "normal" under the doctors' radar. Thank you so much for all of the get well cards and care packages. It gives us something to look forward to. Keep those prayers coming, and thank you for your support. I've said this before, but please know we couldn't do this emotionally, spiritually, physically or financially without you. 💙
The Branches
The Branches
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