Webb was in university, playing soccer, when he started noticing a rash and breathlessness during a run. He’d never had either symptom, particularly since he was in such good shape, playing soccer since the age of three.
When he came home for the holidays, his mom, a veterinarian, suspected the rash could be petechiae. In early January 2023, the symptoms progressed. He looked inside his mouth and saw several sores and bleeding. Startled, he asked his parents to take him to the Emergency Department at his local hospital.
The local hospital ran regular blood tests. The results showed that all counts were down: his red blood cell and white blood cell counts were low, but his platelets were only at 2. Webb’s mom knew this was serious.
After two days in the hospital, he was released, but he returned quickly with painful stomach symptoms and nausea. After another week running tests while he stayed in the hospital, the referral came through to a large teaching hospital, fortunately known for their work in the bone marrow failure world. Before the care team decided to transfer him by helicopter, he wasn’t sure how serious his condition was.
He felt so scared on the trip. “It was an emotional ride,” he said, as he recalled looking out the window at everything below. He remembered his parents crying as he lifted off the pad, his mom on the helicopter and his dad on the ground.
When he arrived at the other hospital, he was met on the helipad by a new doctor. This doctor asked him all the questions about his symptoms and treatment to date, and studied his petechiae. The admission to the Pediatric Hematology Oncology wing started his diagnosis journey with new focus. After about five days, he had a Bone Marrow Biopsy, looking for leukemia, malignancy, or Aplastic Anemia.
During this time, Webb’s parents began staying with him in shifts. He needed their support, especially when the diagnosis and treatment options were presented to him and his dad. Although the health care team presented the diagnosis of Aplastic Anemia as “good news, bad news,” both he and his dad were shaken. They both cried as they heard the diagnosis and treatment options.
Even before the treatment plan was decided upon, Webb’s mom stepped in, insisting that all the family be tested for a transplant match that day. The hospital was over an hour from their home, but that didn’t stop her from bringing his siblings for testing. This action saved time later!
They decided to go ahead with a bone marrow transplant. Webb went home to prepare in isolation, and also in loneliness. He developed an ear infection that no one recognized until it had damaged his eardrum severely. His family dealt with the insurance company and the scheduler to prepare for the day. Late in February, they found out his sister was a perfect match!
The first week of March, Webb was admitted for transplant. He received nine days of chemotherapy, one day of radiation, one day without treatment, and then the transplant.
Even though everything went according to plan, the time in the hospital was tough. Webb said, “It was the hardest thing I’d ever been through.” He lost 30-40 pounds as well as all his hair. On some days during March, he couldn’t even get out of bed. Some days he couldn’t drink water or eat because the nausea was so severe; the medications to help with nausea didn’t work consistently for him. He struggled physically for weeks.
Then in April, he was able to eat and walk a little. He spent time reading and taking online classes through his university. Webb found great comfort and insight in reading the Bible and praying through this difficult part of the treatment journey. His high school coach and teammates came to visit him in the hospital, helping him mentally through this period. He was tested for GVHD but had only negative results, for which all were thankful.
Webb’s parents stayed with him in shifts. His family worked hard to keep his spirits up. In late April, after seven weeks in the hospital, he was released to stay offsite, very close to the hospital. He was grateful that he was able to stay in this facility at no cost for this period, during which he was required to visit the hospital nearly every day. Here, he slowly worked on regaining his strength, lifting weights and spending some time in the sunshine.
As the frequency of appointments tapered off, Webb was able to return home, only returning for the few appointments remaining. Even though he had to drop out of some classes, his university re-admitted him to return for the upcoming semester, starting in August.
Throughout the summer, Webb was motivated to return to the soccer team. He pushed himself to prepare for this goal. By the Spring semester of 2024, he made it! He rejoined his team on the soccer field. His fitness was still less than before his diagnosis, but he continued to work on “cardio” to regain endurance.
Webb finds his “baby” immune system to be the most vulnerable. Cold weather can make him sick, and he catches colds easily as the immunities are rebuilding. Yet he is on track to receive the rest of his “early childhood” vaccines to build resistance to those diseases.
He is grateful to the large group of supporters. Family and friends visited him and kept him busy with mobile texts. They supported his goals of returning to the soccer field and to university. Webb advises family members and friends to “Stay positive, keep pushing them towards their goals” as much as possible.
The advice Webb has for patients is to make goals of what you want for your future life, knowing this phase is temporary. Returning to the soccer field kept him motivated, along with returning to life with his friends and family. He says that patients should keep the motivation inside of themselves, using something similar to his own words, “I’m going to get through this, no matter what!”
Webb plans to keep playing soccer and to finish Business School at the university. He must take extra classes, but he stays focused on doing just that. He now says he is “looking forward to what life has for me!”