CINCINNATI — Hayden Weiskittel, 15, of Anna, who received a heart transplant in April, has experienced a bump in his road to recovery, as he was recently diagnosed with post-transplant lymphoproliferative disease (PTLD).
Hayden had returned home at the beginning of July after a six month stay in or near Cincinnati Children’s Hospital because of his heart transplant. He was finally able to return to school for the first day, but the following two weeks were “rough,” Hayden’s mother, Christa, said.
Lesions were found in his liver and other areas of his body from several tests at Cincinnati Children’s after Hayden woke early one morning a few weeks ago with severe abdominal pain. He was taken to the hospital with doctors’ suspicion the pain was coming from his appendix, but that was not the case.
“We wouldn’t wouldn’t have found (the lesions) when we did, had he not had the stomach pain and they were looking for appendicitis. That’s how it all really came about,” Christa said by phone from Children’s Hospital, Thursday.
The growth of abnormal cells came from the immunosuppressant drugs Hayden was given to prevent his body from rejecting his new heart, Christa posted on the website devoted to Hayden’s journey at cotaforhaydenw.com.
“They were surprised … and disheartened. We’ve been through this journey together with the heart transplant, and now it’s kind of, ‘here we go again,’ sort of. And (they felt) sorry, I guess, that he has to go through this, also,” Christa said of Hayden’s doctors’ shock about the development of the PTLD. “It is something that can happen with heart transplant patients, but it’s not extremely common. But they have treated patients here (at Cincinnati Children’s) with it. They have experience with it, but it’s not something that happens a lot here.”
According to the Lymphoma Association, the risk of developing PTLD is greatest during the first few months after a transplant when on the highest level of immunosuppressive drugs. The association’s website, https://www.lymphomas.org.uk., notes that very few people develop PTLD after a transplant, and if it does occur it can be a very serious complication.
Christa told the Sidney Daily News that Hayden’s PTLD is in a “pre-cancer” or “early stage of lymphoma.” Lymphoma, according to Wikipedia, is a group of cancerous blood cell tumors that develop from white blood cells called lymphocytes.
Hayden’s doctors are very optimistic, however, that he will get through the set back, Christa said, as it is a treatable condition. His treatment plan, she said, is to receive a low dose chemotherapy for 18 weeks. He will stay at Children’s until more tests are completed next week, then hopefully will be released to stay at the Ronald McDonald House across the street for a couple of weeks until doctors feel confident enough for Hayden to return home during the remainder of his treatment.
So far, Hayden has tolerated his first chemotherapy treatment “pretty well,” Christa said. Next week’s tests will gauge how well his heart is doing. If the results are OK, he will be released from the hospital, she said.
“Overall, (Hayden) is doing pretty well. He is having a lot of problems with headaches right now, which they are contributing to the medicines he is taking right now, but that really has been his biggest complaint,” she said.
Once Hayden starts feeling better, his mom said he will resume his school work with the teachers available at Children’s, who work with his Anna High School teachers to ensure he doesn’t get too far behind.
“We are trying to get some school work done and get outside a little bit, when he is feeling up for it. And just try to live as normal of a life in the hospital as we can,” Christa said, who stays in Cincinnati all week with Hayden, then switches with her husband, Scott, who comes to stay on the weekends. Hayden’s siblings, Logan and Madison, both in college, try to visit when possible or on weekends.
Hayden’s progress can be followed at cotaforhaydenw.com. That’s also a website through which people can donate to the fund set up to help with the Weiskittel’s medical expenses. They’ve set a $50,000 goal and have about $16,500 still to raise.
To help with expenses, a hog roast fundraiser is planned from noon to 2:30 p.m. on Oct. 8, at St. Jacob Lutheran Church, 101 W. Main St., Anna. A limited amount of pre-sale tickets (only) are available for $8 at teamhaydenw.gmail.com. The meal includes pulled pork, baked beans, cheesy potatoes and a dinner roll. Beverages will also be available to purchase as well as carry-out meals. All proceeds will go directly to the Childern’s Organ Transplant Association (COTA) for Hayden.
In the past, friends have been invited to write Hayden in care of Cincinnati Children’s Hospital or the Ronald McDonald House Charities, however, at this time, it is unknown where he will be staying and for how long.
“It was a little disheartening, but you just keep pushing through. It’s the only option. You just think of what you need to do and just keep fighting,” Christa said.
