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.

Here is the link to the form, please take a minute.
https://secure3.convio.net/hhf/site/Advocacy?cmd=display&page=UserAction&id=111

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

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!!

WILLIAM HAS A WHITE BLOOD CELL COUNT

The transplanted stem cells are growing!!!

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

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

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