Hi everyone,
I wanted to share a meaningful update on Jesse’s progress since our last post.
We’ve reached a really big milestone — Jesse has officially been discharged from inpatient care and is now an outpatient. We’ve moved across to the Children’s Inn, a special place that supports families going through exactly what we are. This step alone says so much about how far he’s come.
Jesse’s journey over the past weeks has been nothing short of incredible. His blood counts, which dropped all the way down to zero after transplant (as expected), are now steadily rising. His new bone marrow — from his donor — is doing what it’s meant to do, and it’s starting to rebuild his immune system. One of the most encouraging signs is that his chimerism levels are at 100%, meaning his new immune system is fully donor-derived. This is exactly what the doctors were hoping to see.
He did experience some mild upper gastrointestinal GVHD, but thankfully it was caught early and has responded very well to treatment. He’s currently being tapered off the steroids and several of the medications that were part of the initial transplant protocol, which is another positive step forward.
Clinically, Jesse is doing so much better. He’s eating like an absolute machine, his stomach has settled completely, no more cramps, no nausea, and everything is functioning as it should. His strength is coming back, his energy is improving daily, and most importantly — he’s becoming himself again.
We’ll now be going into the hospital about three times a week for ongoing monitoring. Jesse still has a PICC line in place, which allows the team to take blood easily and administer anything he might need without repeated needle sticks. At this stage, his bloodwork looks good and he hasn’t needed any transfusions, but the line is there as a precaution.
Over the next couple of months, while we stay at the Children’s Inn, the team will continue to monitor him very closely. This includes watching for any signs of GVHD, as well as keeping a careful eye on infections — bacterial, viral, and fungal — while his new immune system continues to strengthen and mature.
This phase is all about steady recovery, careful monitoring, and allowing his body the time it needs to fully rebuild.
We are incredibly grateful to have reached this point. It’s a big step forward, and one we don’t take lightly.
The NIH is truly the best facility in the world that we are so extremely fortunate and blessed to allow Jesse the best medical care through this journey!
Jesse is doing really well — stronger, healthier, and moving in the right direction every single day. He’s not completely out of the woods yet, but he is definitely coming through them… and everything is looking positive from here.
Thank you to everyone who continues to support, pray, and stand with us. It truly means the world.
– Clayton and Lee-Ann
Update also available on Facebook: https://www.facebook.com/share/r/1MeyQtvtr5/
