We had just celebrated his 5 years in remission when Hayden began showing similar signs of sickness in September of 2021. I called his oncologist and we got him in right away for blood work. Later that day, I got the call he had relapsed. When I told him he dropped to the floor screaming. He knew how hard it was going to be. He was able to go fishing and spend some time with friends and family before we made the drive to KC. The next day they did a bone marrow biopsy confirming the results and that it was still type b-cell ALL.
He had a port placed and he began treatment right away. He was inpatient for several months due to getting Herpes Simplex in his blood. He started going down hill fast and he was sent to the PICU for about a week. He pulled through and was able to go home.
Once again we did not get the results we wanted. Hayden then began a trial drug called blinatumomab, he got some great results, but he had severe side effects resulting in brain swelling and seizures. We then tried car t-cell therapy which had amazing results, but wasn’t completely in remission. He was then prepped for a bone marrow transplant. He received 12 rounds of radiation and chemotherapy. He went through transplant in May of 2022. Everything was going great and he got to leave the hospital a few weeks early! Hayden and I stayed in KC away from our family for several months until he was deemed in the clear of Graft Vs. Host Disease (GVHD).
After a couple months of being home Hayden tested positive for Adenovirus. A day later he started breaking out in a rash. Within 3 days he was covered head to toe. He was admitted back to the hospital in KC. He had T.E.N. a severe form of StevensJohnson syndrome, which quickly turned into GVHD. Another long road to haul. With many ups and downs, failed medicines, terrible pain everywhere, and a 67 day stay in the hospital he got to go home. He was home 2 weeks and started having irritation in his eyes. At first we all thought it was a GVHD flare. It ended up being herpes simplex in his eyes. So back to the hospital he went. After another week in the hospital he was cleared to go home.
He has been home since, but we make trips to KC twice a week. He has been struggling with keeping his weight up, high uric acid in his kidneys and high liver enzymes. He is having another GVHD flare up causing sores and peeling of his skin, red painful eyes, and throat and tummy pain. He will be going in on Monday to have a scope of his digestive tract done. He has started having trouble swallowing and his stomach is always feeling full. He is taking 16 medications a day, 5 types of eye drops, and 4 different creams for his skin.
Hayden is a fighter and warrior!! He also loves his Jayhawks!! ❤️💙