5 days post transplant

Hey, folks!

William's uncomfort is now under control (at least until it needs adjusted again.) I can't talk highly enough of Children's Hospital of Pittsburgh. They know exactly what to do and when to do it and have several support units for family to talk to about concerns. William has a physical therapist, occupational therapist and speech therapist that come to see him twice weekly (they do very little with him right now, as he's not feeling to well but I want him exercised as much as possible). He had custom made hand and feet splints for correct alignment (his fists try to stay closed and his ankles try to bend inward, all part of this awful disease). I could go on and on about our experience thus far, but I'll save that for another day.

I am feeling much better. I was feeling so bad, actually, that I got a hotel room so I would keep the germs away from my family. I went to an Urgent Care yesterday and was so dehydrated and nauseous, they hooked me up to an IV just to get fluids in me asap. I can't remember being this sick since my first year of teaching 10 years ago. Anyway, my pity party is now coming to an end and I am feeling much, much better (physically anyway).

Grandma Carolyn is giving Papa Ron a rest from all night baby duty tonight and staying with William in the hospital room. My parents are planning on heading home tomorrow and needed to get some good rest for the drive. Wish Carolyn luck, although I'm pretty sure she won't mind some extra snuggle time.

Thank you for your support and prayers! I know William is in good hands, but being away from my little boy was quite possibly the hardest thing I have EVER done.

Love, The Branches

4 days post transplant

Dear family and friends of Sweet William,

William is proving time and time again how strong he truly is. It has been a rough past couple of days, which was to be expected by the doctors, but nothing could really prepare us for how difficult it was been for our little guy. He has the common side effects from chemo, and his pain and restlessness has been difficult to manage. His little body doesn't tolerate "the good" pain meds like Morphine; his blood pressure, heart rate and body temperature would fall as a result, even on a quarter of the minimum dose (which did nothing for the pain). Fortunately, there are several different combinations to try, but it takes time to find the balance. However, he did amazingly today with little pain medicines and sedatives, so I believe he is starting the slow uphill climb.

In addition, I came down with a stomach virus, great timing 😒. So, I am unable to visit my little man until I feel better due to his body not able to fight off viruses right now. Gogo Marcia, Papa Ron and Grandma Carolyn are on round-the-clock baby duty while I'm resting and Robert is at work. 💙

Thank you for your continued thoughts and prayers. It will be about another week until his body accepts the donor stem cells, grow cells grow!

transplant complete

Transplant complete! William did great!

transplant day!!

Transplant will be starting any minute. William was having a lot of uncomfort a few minutes ago, but his rockstar pain management team and nursing staff has him comfortable now and he's resting (they've done this a time or twelve). Transplant donor cells will go into his central lines and it will take about an hour to complete. Basically, it's looks very similar to a blood transfusion. He will not start to feel better for a couple of weeks (the donor cells should slowly start to engraft in 4 or 5 days), so this will be the toughest stretch. Thank you all SO much, words can't express how your support and love has guided us all through this journey.

T minus 48 hours (until transplant, not rocket launch)

Family and friends,

Today was William's last day of chemo. He is holding steadfast and resting well. His pain management team is constructive and adaptable. The toughest part is from today through the next 2 to 3 weeks as it takes time for the transplant (donor cells) to graft. His overall appearance is OK; he is somewhat pale but doesn't have any negative aggressive side effects at this time. The chemo has done its job effectively and his white blood cell count is now at 0. Tomorrow he will "rest" from chemo and the transplant will be on Thursday. Because the chemo is secreted through the skin, we are unable to touch him without the aid of surgical gloves, but that protocol will only be necessary for 24 hours from the time the chemo ended. PapaRon and Gogo Marcia are imperative for William's well being and also my own; Papa Ron has stayed with William the past 5 nights. Robert will be back in Pittsburgh tomorrow (he travels back and forth from Salt Lake City for work) and will be here for transplant day. Thank you for your support and prayers. We have a good support team here that are readily available for any needs we may have (although a cure for Krabbe Disease would be super great about now).

Love, Robert, Abbey and Baby William

Two days from transplant

Two days from transplant day. William managed to give me a smile today, and how he found the strength to do so is beyond me. His white blood cell counts are extremely low and he is unable to keep feeds down due to nausea. He is getting nutrition through his central lines and the other three lines are being used for medication. The nursing staff here at Children's Hospital of Pittsburgh are exemplary; they are unmatched for sure. I am going to hold off on posting pictures until William starts to feel better, which will be when the new white blood cells start to multiply (2-3 weeks from transplant day.) But I will keep you all updated on his progress as much as possible. As far as the chemotherapy regimen, his blood work and symptoms are unremarkable. Thank you for your continued prayers and support. His hospital room is getting more colorful by the day from pictures and get well cards from all over the US. He is loved.  Love, The Branches

Chemo medications/schedule

William's chemo regimen.  Begin date:  January 7th, transplant date January 22nd.