Hi everyone,
It’s been a little while since our last update, and we wanted to share where things are at on Jesse’s journey.
Jesse is now on day 73 post-transplant, and we’re so grateful to say that he is doing really well. The past few weeks haven’t been without their challenges, though. When we moved into outpatient care, Jesse had a PICC line in his arm. It limited his movement quite a bit, and even simple things like showering became a daily struggle trying to keep it dry.
After about two weeks, Jesse made a decision that honestly stopped us in our tracks. He asked for the PICC line to be removed—knowing full well that it meant regular needle sticks for blood draws, three times a week. And he chose it anyway.
Jesse sits there and bravely puts his arm out for those needle pokes without hesitation. For a young boy to make that choice… it says more than we ever could about what he’s endured, the strength he carries, and the road he’s walked to get here. It’s both heartbreaking and incredibly inspiring at the same time.
Along the way, Jesse has developed skin GVHD, which the doctors are actively managing with the right medications. This is part of why the 100-day post-transplant period is so important—monitoring, adjusting, and making sure everything stays on track. He’s still going in for blood tests three times a week, and they’re keeping a very close eye on everything.
Jesse still has bone or growing pains from the medication he is currently on to suppress his immune system. His feet particularly are very sore and he explains it as if it is cramping and burning inside his feet, but that should subside when he tapers off those meds in about 4months time.
Despite all of this, Jesse keeps pushing forward. He’s seeing an occupational therapist twice a week and is also attending the NIH school daily, continuing with his Grade 1 work. We’re incredibly proud of how well he’s doing—he’s showing up, learning, and progressing in the middle of all of this.
Right now, things are moving in the right direction. If everything continues as it is, we’re hoping to head home around May 24th, which will mark his 100 days. (Still four weeks till we can come home, been in the states for 4months already) Of course, that all depends on how things continue—especially with GVHD—but we are hopeful. We would need to continue with follows up appointments with Prof. Reynders who is the head of the Paediatric Oncology Unit at Steve Biko Academic Hospital with specific interest in paediatric bone marrow transplants, in South Africa, in calibration with the NIH transplant team when we are home.
Back home, Sadie is doing really well too. She’s staying on all her precautionary medication, attending her monthly check-ups, and continuing her weekly IVIG treatments. We are beyond grateful to her grandparents, Henry and Dorothy, who have stepped in and are doing an absolutely incredible job taking care of her. We couldn’t do this without them.
To everyone who has supported us, prayed for us, and walked this journey alongside us—thank you. Truly. Your prayers, your messages, your kindness… we feel it, and we believe it’s making a difference.
We’re not at the finish line yet, but we are moving forward—one step, one day, one victory at a time—toward what we believe will be a long, healthy future for Jesse.
With sincere gratitude,
The Krause Family
