Living Life to the Fullest: 9 Years After Chronic Myeloid Leukemia Diagnosis
Five years ago, I wrote about the amazing care our son Adam was receiving at Cincinnati Children’s for chronic myeloid leukemia (CML). Fast forward to 2019, nearly four years after he graduated from college, he is living life to the fullest!
His Knee Pain Was Chronic Myeloid Leukemia
Adam was a high school swimmer and childhood soccer player who began complaining of knee pain in January 2010. This is not unusual among athletes, and so we took Adam to an orthopedic doctor. Unfortunately, the diagnosis was not orthopedic-related, but instead was confirmed to be CML. The pain was the direct result of excess white blood cells settling in Adam’s knee – 254,000 to be exact.
Chronic Myeloid Leukemia is “CHRONIC”
CML research has benefited from funding that has resulted in several oral chemo drugs that get the illness under control and keep it there. Thus, CML is unlike most leukemias that occur in children and adolescents – no intensive treatments, BUT no cure. That’s where the word “CHRONIC” comes in. Adam would associate more with patients with arthritis, diabetes or similar chronic illnesses – than cancer patients. The plan was to get the CML under control, monitor it regularly, and move on with life. We knew it might not be that simple, certainly not emotionally, but that was the plan!
Nearly nine years later, with a few bumps in the road, Adam continues to take an oral chemo pill each day and his CML remains under control. This pill keeps his leukemic cells at a nearly non-existent level.
Adam Now Lives and Works in Spain
Adam has received amazing and consistent care from Dr. Maureen O’Brien, Care Manager Mary Snow and the entire team at Cincinnati Children’s. But here’s the kicker: since 2015, Adam has been living and working in Spain!
Adam graduated from The Ohio State University in 2015 with duel degrees in Spanish and Zoology. His original plan was to teach sciences at the collegiate level. He decided to take a ‘gap year’ first. A fluent Spanish speaker who spent much of his college breaks visiting Spanish-speaking countries, Adam was accepted into a year-long program called “Language and Culture Assistant”, operated by the Spanish government, soon after graduation.
This program is designed to increase the rate of English speakers among the Spanish population. College grads like Adam, recruited from English speaking countries all over the world, are immersed in Spanish schools with the goal of teaching them English. Some days Adam works in a math class, other days it’s science or language arts. Sometimes he introduces his students to American holidays and culture. Whatever he is doing in the classroom, he is speaking to the students in English to help improve their skills.
What began as a ‘gap year’ adventure has turned into Adam’s ‘real life’! Nearly four years later, he is living and loving life in Seville in the south of Spain. He teaches students of all ages in both a public school and a private academy. He travels throughout Europe, welcomes visitors to Spain, and has made a wonderful group of friends.
Adam Still Comes Home to Visit and Attend Clinic Appointments
Adam does love his visits home, which typically occur twice a year. Visits to Cincinnati Children’s are always part of his itinerary. Dr. O’Brien and her team are fantastic in helping to coordinate bi-annual clinic visits to ensure Adam’s CML remains under control, possible side effects are monitored, and his medication reaches him.
During the early years of Adam’s clinic visits, he became close with Dr. O’Brien and her team. He received college advice, career tips, guidance on inoculations for foreign travel, relationship advice and more. Today, he and the team continue those personal relationships. Dr. O’Brien, for instance, often turns their clinic visits into lengthy discussions about where Adam has traveled. She compares notes with her own love of international travel.
Transitioning Health Care Responsibility
As a parent, I have watched their relationship grow and mature. No longer Adam’s caregiver, I am now a bystander to their relationship. Dr. O’Brien encourages Adam to contact her via e-mail whenever he has a health concern. As he turns 26 and transitions to his own health insurance later this year, he will continue his treatment with a Spanish oncologist. Bittersweet for sure! Dr. O’Brien provided medical records and translated them into Spanish for his new medical team.
The professionals at Cincinnati Children’s – doctors, nurses, social workers, lab staff – have all encouraged Adam to live his life and to not allow CML to get in the way. Adam’s Dad and I have watched him blossom from a shy teenager who was given a scary diagnosis into a confident young man who is not afraid to share his story. He is kind, caring and very aware of the positive effect that he, as a teacher, can now have on his own students and their families.
While we miss Adam terribly and hope he will come back ‘home’ one day, we are incredibly proud of the life he is living. He is not allowing CML to get in the way of a fulfilling life and Cincinnati Children’s has been our partner in making that happen.