Hi everyone,
I’d like to share another update on Jesse following our last post. (Day+31)
After the previous update, Jesse was scheduled to have a scope done on his stomach so the doctors could better understand why he was experiencing such severe cramping and ongoing nausea. At that stage, he was already on a full range of anti-nausea medications, but unfortunately the symptoms were not settling.
Following the scope, Jesse was immediately sent for a sonogram. After reviewing all the results together, the doctors confirmed that Jesse had developed acute Grade 1 GVHD (Graft-versus-Host Disease) in the upper gastrointestinal tract.
GVHD happens when the new donor immune cells begin reacting against the body they have entered. In Jesse’s case, he now has his mom’s donor cells working inside his body. The immune cells are essentially trying to work out what belongs and what doesn’t, and during that process they can sometimes overreact and cause inflammation. The treatment for this is medication that calms down the immune response so the cells can learn to coexist and tolerate each other over time.
The doctors started Jesse on a steroid treatment to reduce the inflammation and settle the immune reaction—and thankfully it worked incredibly well. His body responded almost immediately. The nausea improved, his appetite returned, the stomach cramps and diarrhea eased, and he began regaining strength. With the inflammation settling down, his blood counts also started improving quite significantly, and he is currently sitting at some very encouraging levels.
Before starting the steroids, the team also performed a chimerism test. This test measures how much of the blood and immune system is made up of donor cells versus Jesse’s original cells. We were incredibly grateful to learn that Jesse’s results came back showing 100% donor cells, which is a fantastic outcome and exactly what the doctors were hoping to see. They will continue monitoring this over the coming days and weeks.
At the moment, Jesse’s blood pressure has been running a bit high, which the doctors believe is likely related to some of the medications he is currently taking. They are monitoring this closely.
Since the last update, Jesse has also had his central line removed and replaced with a PICC line in his arm. This allows the team to draw blood and administer medications without needing to poke him with needles every day, which is a big relief for him. His blood is tested daily to monitor his counts and medication levels.
As part of their routine monitoring, the doctors have also been running regular stool, urine, and nasal swab tests every few days. These picked up two parasites and a virus, which Jesse is now receiving medication for. This can happen after transplant when the immune system is extremely suppressed—organisms that normally stay quiet in the body can take advantage of the weakened immune defenses. Thankfully everything has been detected early and is being treated.
The level of care Jesse has received here has honestly been incredible. The doctors and staff have been unbelievably thorough and careful with every detail, and it has been a privilege to work with such an amazing team here at the NIH.
If everything continues to go well, we are hoping that Jesse will soon be discharged from the inpatient unit and move to outpatient care. This means we will stay nearby instead of in the hospital itself, but we will still return to the hospital every day for monitoring and tests. Being able to stay in a quiet room without all the machines and alarms will be a really nice step forward for Jesse.
Right now the focus is on continuing to build Jesse’s strength, allowing his new immune system and blood cells to mature, and gradually reducing the number of medications he needs as his body stabilizes. The doctors will keep adjusting things day by day based on his blood results.
We still need to remain here in the United States for the full 100 days after transplant. Jesse is currently on Day +31, so we still have a little over two months to go. It’s a long road, but we are receiving the best care possible and we want to make sure every single box is checked to give Jesse the strongest future possible.
Overall, things are moving in the right direction and Jesse is continuing to make progress.
We just want to say a heartfelt thank you to everyone who has supported us, prayed for Jesse, and sent messages of encouragement. This journey has been one of the hardest experiences of our lives. At times it has truly felt like we’ve walked through hell. But we know the end goal is worth every step, and we are incredibly grateful for the love and support surrounding Jesse.
Thank you all for walking this road with us.🙏
Clayton, Lee-Ann and Jesse
