James was diagnosed with Non-Hodgkin’s Lymphoma – T-Cell Lymphoblastic Lymphoma on July 20, 2020, just a few days before his fifth birthday. The McCary family, Kate (mom), Mike (dad), brother Nathaniel and sister Anna, were all devastated by the news, which came as a huge shock.
Kate recalls, “I was putting James to bed one night, and I noticed a strange lump on the side of his neck. At first we thought it was an inflamed lymph node. I remember we looked up “inflamed lymph node” on the Internet that night and we read it was likely harmless and rare for it to be something more serious like cancer. We felt relieved that night after reading the likely cause and figured the chance would be too slim for it to be anything else. Turns out we were one of the rare, unlucky ones. A biopsy ultimately confirmed James had T-cell lymphoblastic lymphoma and our life as we knew it collapsed around us. Everything was a blur those first few weeks and months. We spent many days at the Jimmy Fund so that James could undergo further testing, endless blood draws, surgery to have a port put into place and he began chemotherapy immediately.”
Though James’ cancer was considered high risk, there was also a good prognosis for being cured. After James’ initial treatment and recovery, he spent 13 months in remission. Unfortunately in the summer of 2021, routine testing showed a possible recurrence of the cancer. After months of testing, in October of 2021, for the second time, the McCary family received the heart breaking news that James’ cancer had in fact returned. This meant James would need to undergo additional chemotherapy, radiation and a bone marrow transplant, which would require finding him a donor match.
Amazingly, James’ brother, Nathaniel, was a match and was able to provide James with the life saving bone marrow he needed to fight off his cancer once again. This was a difficult procedure for Nathaniel and also meant the McCary family would have two children in the hospital at the same time. Fortunately, the procedure went well and Nathaniel made a quick recovery.
After his bone marrow transplant, James’ recovery was really hard. He was extremely sick, weak and susceptible to infection because the transplant had entirely wiped out his immune system. James had some complications in the hospital, but was fortunate enough to recover from them after receiving excellent care at Boston Children’s. After more than a month stay at the hospital he was sent home only to return a week later for GVHD (Graft-versus-host-disease). Finally, after an additional week in the hospital, James started feeling better.
The McCary’s had to be really careful about isolating him at home, keeping the house clean and free from dust, cooking his food a certain way to avoid contamination, and James had to be tutored from home because his immune system was not strong enough for him to go back to school. This September, James was allowed to stop all precautions and return to school in-person. He has been extremely happy and healthy this fall, much to his parents’ relief.
The McCary family is very grateful for the support from the community and friends, they could not have gotten through these difficult years without it. Kate says that, “People are extremely generous and willing to help which is so important because no family should have to go through this alone. Don’t blame yourself. I found it hard not to do this, but cancer is nobody’s fault. Recognize this is a marathon and not a sprint, and try not to focus on what could happen, focus on the now.”
The McCary family participated in two survivor retreats this summer through Rett’s Roost, as well as the Behold the Cold Polar Plunge last March and the Superhero 5K in October. According to Kate, “We have thoroughly enjoyed attending the retreats and meeting other families who have gone through a childhood cancer diagnosis. There are not too many people who can understand something like that, and it was so helpful to find other people who had a similar experience. Rett’s Roost also knows exactly how to have fun. We have loved all the activities for both parents and kids that support healing. I also feel comforted to know that Rett’s Roost is around to support us, should we have to face more challenges ahead.”
Bone marrow donors are significantly lacking in the United States and we frequently rely on donations from other countries. If you would like to learn more about bone marrow donation, go to www.bethematch.org.
