‘Thank you for saving my life.’
In November 2010, a few days before her 5-year-old son Ryan was to undergo a bone marrow transplant from a donor they had never met, Maggie Compton made a print of Ryan’s tiny hand on a blank greeting card, which she planned to send to his donor with her own thank-you letter.
For the next 2½ years she could never finish her letter because “words seemed so insignificant.” Recently learning she could thank the donor in person May 10 at City of Hope’s Bone Marrow Transplant Reunion, she finally found her muse, and put her gratitude into words. She also helped Ryan craft a message: “Thank you for saving my life.”
“You gave our young son a second chance at life when it seemed that all his options had run out,” Compton wrote to the donor. “You must have a super hero’s immune system and energy, because that is what you gave him when you shared your marrow.” Looking at the boy who loves swimming and karate, and is so boundlessly energetic he’ll start running during a four-mile walk, “it’s hard to tell now that he was ever sick,” she added.
That was not the case during much of Ryan’s life. In March 2007, at just 22 months old, Ryan turned lethargic and started spiking high fevers. Initially diagnosed as the flu, the illness soon was re-diagnosed as acute lymphoblastic leukemia. He underwent intensive chemotherapy over the next 3 ½ years, a period she described as “heartbreaking, terrifying, traumatizing and difficult.” His family celebrated the end of treatment with an “epic camping trip” at Lake Powell. Ten days later, Ryan relapsed.
This time, the disease returned with a vengeance, seemingly immune to bombardments of extremely aggressive chemotherapy. He underwent four days of radiation so intense it maxed out his lifetime limit. “It made the first 3 ½ years seem easy,” recalled Compton. “He was at the end of the line.” His only hope was a bone marrow transplant, yet given their ancestry (Compton is Mexican-American, and her husband, Jason, is Polish, German, Russian and American Indian) they feared that finding Ryan’s genetic twin would be unlikely. They were stunned when a “perfect match” was identified and willing to donate.
However, when residual leukemia cells were found in Ryan’s body, transplant plans were briefly halted as his family and medical team led by Anna Pawlowska M.D., director, Pediatric Bone Marrow Transplant Program at City of Hope regrouped. “We decided together as a team to take a chance and go forward with the transplant even though he was at high risk for transplant failure.” The night the donor cells arrived, Ryan stayed awake to watch the cells in the IV bag drip into his body. His mother has a photo of him smiling up at the bag. “He kept saying, ‘my new blood.’”
Compton also has photos of Ryan wearing his own miniature LAPD uniform. Throughout the years of his illness, a faithful procession of police and firefighters Compton calls his “honorary aunts and uncles” helped sustain the family financially and emotionally. LAPD Chief Charlie Beck even visited Ryan in the hospital while he was recovering from his transplant, bringing an LAPD teddy bear and a tiny LAPD Chief’s badge on a keychain. “There’s a brotherhood, a circle that goes on when someone’s in trouble,” Jason Compton said. “You help them out.”
One of her favorite photos of Ryan was taken in the Utah desert, where in November 2011 his family celebrated his one-year post-transplant anniversary with a three-mile hike. “He hadn’t been permitted to play around sand and mud, and finally he got to be a little kid and play with dirt and rocks. He just made up for lost time.”
In February2012, Ryan went off all his meds, and is now powered by his donor’s blood. “Ryan is a very happy little boy who loves life,” wrote Compton, a boy who helps his family raise funds for groups like St. Baldrick’s and Alex’s Lemonade Stand, and likes coming back to City of Hope to give toys to kids in the pediatric unit where he once lived. “We do our best as a family to help others the way we were helped during our darkest days,” she added.
Years of treatment have taken a toll, however. Ryan has multiple learning disabilities, including Mixed Expressive-Receptive Disorder. “It’s like a speech delay so he’s not as eloquent as a typical 8-year-old,” said Compton. Yet, he is quickly catching up with his fellow first-graders and loves working with occupational and speech therapists and with the aide who helps keep him on task in class.
When Ryan was first diagnosed, the Comptons enrolled in the Be the Match bone marrow registry, never suspecting their son would need a transplant. “I really do hope we’ll be able to donate at least once. I’d do it in a heartbeat. It’s better than any gift to give somebody a second chance at life – cancer free.”
Ryan’s illness has transformed all their lives. Compton, a geologist, deferred plans to teach college so she can help Ryan and her sisters’ children, whom she and her husband are also raising, “get caught up on everything they missed out on while our son was ill.”
“We want you to know that we live more deeply because of this entire experience and also because of the second chance at life that you gave our son,” Compton wrote her donor. This summer, for instance, instead of replacing pipes and windows in their house, they’re going to visit friends in Europe.
“I just feel that life is so short,” said Compton during a recent interview. Watching Ryan’s hand pilot a tiny Matchbox car along the table, she added, “Who knows what the future holds for him? Jason is a police officer. I have a perspective that any of us could walk out the door and not come back. We only have one life and it’s fleeting and it’s precious and there’s so much beauty and goodness in it. We have learned to try to focus on that. That’s the biggest lesson we’ve learned from this.”
To Ryan’s new “blood relative,” whom she considers a permanent member of their family, Compton wrote, “We often silently thank you as we watch our son sleep soundly, watch him run, or watch him do just about anything. We can’t wait to meet you and thank you in person and to share our son with you, so that you can see with your very own eyes what an amazing thing you have done for our family.”
'I just hope that if my baby ever needed a donation there would be someone to step up.’
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