Our son Adam (far left in the photo above), a high school swimmer and childhood soccer player, began complaining of knee pain in January 2010. This is not unusual among swimmers (or soccer players for that matter) – they swim so many miles each day at practice, their joints frequently ache and Ibuprofen is doled out almost without thought.
We did due diligence, taking Adam to an orthopedic surgeon, who diagnosed overuse and tendinitis. With rest – the short swim offseason of March and April – it should improve, we were told.
Only it didn’t.
On May 10, 2010, we took Adam back to the orthopedic surgeon. To be cautious, he ordered an MRI of the knee. To all of our shock, the MRI revealed a likely diagnosis of leukemia.
Thus began a frantic round of medical visits to confirm a diagnosis. Adam was indeed diagnosed with leukemia at Cincinnati Children’s on May 13, 2010 – Chronic Myeloid Leukemia (CML) – which is VERY rare in children and adolescents. It is a ‘middle aged’ person’s leukemia. The knee pain was the direct result of an excess of white blood cells settling in Adam’s knee – 254,000 white blood cells to be exact.
We spent two days in the PICU to get Adam’s white blood cell count down as quickly as possible. That was followed by a two week+ inpatient stay for IV chemo and the introduction of an oral chemo that will stay with Adam for the foreseeable future.
CML research has benefited from vast funding that has resulted in several chemo drugs that get the illness under control, and keep it there. Thus CML is unlike most leukemias – no horrible treatment, BUT no cure.
That’s where the word “CHRONIC” comes in. It was accurately described to us as a situation where 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!
Adam’s two week stay at Cincinnati Children’s was amazing. We were a family in shock who were absolutely taken care of by the hospital’s staff. From the oncology team (led by Dr. Karen Burns and Dr. Maureen O’Brien) who explained the diagnosis and treatment directly to Adam and his teenage siblings, to the Child Life team who found an XBOX, laptop and PG13 movies for Adam to help pass the time, to the staff who helped Adam stay on top of his AP course homework, to the nursing staff who allowed an excess of teenagers, adults and swim coaches to visit Adam’s room at the end of every school day, to the birthday party nurses threw for his 17th birthday just three days after diagnosis, to the financial aid specialists who explained our insurance and medication options. We felt wrapped in a safe cocoon in the midst of our worry.
After the CML was under control, Adam went home and went on with life, with frequent visits to Cincinnati Children’s for blood work and bone marrow aspirants to ensure the medication was doing its job.
An unrelated meningitis diagnosis and kidney injury in August 2012 found us back in the hospital for another scary week’s stay, and the oncology, infectious disease and nephrology teams worked seamlessly together to bring Adam back to good health again.
Our clinic visits have become incredibly informative for Adam because the staff have taken time to get to know him and his aspirations in life. He has enjoyed college advice, career tips, guidance on inoculations needed for study abroad opportunities, and information on obtaining internships from the staff. They are truly his second family.
Adam is now in his third year at The Ohio State University and he recently returned from a six week internship in Costa Rica, studying whales, dolphins,sea turtles and the toucan with which he is pictured above. Adam is majoring in Zoology and Spanish, with an eye toward becoming a professor and conducting animal field/lab research. Thanks to the continued care Adam receives from Cincinnati Children’s, the future looks bright!