The Journey to Recovery: “What a difference a year makes!”
In June 2015, Clayton Cowan underwent a bone marrow transplant for Chronic Granulomatous Disease (CGD). Over the past year, we’ve been keeping tabs on the Cowan family, who live in Maryland, to see how 13-year-old Clayton (soon to be 14) and his brother 111-year-old Graham, who donated bone marrow for Clayton, are recovering. His mother, Marty Cowan, has kept up a positive and upbeat environment for not only Clayton, but their entire family.
In the past, Marty has described a time where the journey to get Clayton diagnosed with CGD was stressful on the family as a whole. She, however, has found that there are three parts to this journey: Discovery, Transplant, Recovery.
In August of last year, “…he was just coming home from transplant housing near Johns Hopkins Children’s Center.” Now, Clayton is described as happy, full of energy, and enjoying his time being a kid.
The life, post-transplant, was rocky for the Cowan family. Small strides in Clayton’s health were big accomplishments because they led to a full recovery. “He was amazing through it all,” says his mother. That recovery period lasted roughly nine months, and it was filled with nausea, low energy, and headaches for Clayton.
Celebrating Life Beyond the Hospital
However, during the last year, Clayton had much to celebrate. In April of 2016, Clayton returned to school full-time, finishing 7th grade in G/T classes, and he started 8th grade this fall. His 1-year transplant anniversary was in June, and family and friends celebrated with lunch at their favorite café.
These celebrations were for more than just Clayton. Graham, his brother, was only 10 years old when he offered to donate his bone marrow to his older brother, as they were a 9 out of 10 match.
Graham has been doing great over the past year too. As a reminder of the bravery he faced, he received a bracelet after his surgery that says, “BE A HERO, BE A DONOR.” He never takes it off.
The brothers have also had time to attend a few baseball games including the Orioles, Nationals, and Rockies, but the Baltimore Orioles are Clayton’s favorites.
Life After a BMT
For parents, like Marty, there is very little information on how to cope with caring for child with CGD. “It would have been really great to be able to know more about this journey from a parent’s viewpoint,” she says. Marty feels that speaking to a professional to talk about feelings and fears could have given her extra strength in the journey. “I thought I could handle it.”
She found most, though, that taking care of herself and her body was crucial in being able to care for her child. Marty would often practice yoga in Clayton’s hospital room, due to him needing her there. But, she insists it was all worth it for all parents. “Having the release of fresh air and exercise is vital; I can’t stress it enough.”
For Clayton, living a regular life is as good as it sounds. When thinking about Clayton’s future, Marty is as hopeful and positive as always. It’s shown in how she thinks about the picture of Clayton jumping off a small cliff into freshwater in Colorado. “To me, this picture signifies him jumping into his new life, full force,” she says. “It’s one of my favorites.”
Thank you to the Cowan family for giving us a glimpse into their lives! Do you have a story to share? Contact IDF: email@example.com.
- Living with CGD
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