Reef R.

On March 17th 2025 our world stood still as we listened to a doctor utter every parent’s greatest fear…”your son’s tests are consistent with a diagnosis of cancer.” As we came to find out our 8 year old son Reef, had a white blood cell count of 94,000 which is 7 times the high limit of normal. Additionally his red blood cell counts were low and his platelets were registering over 1,200,000, nearly 3 times higher than the highest they ever should be. The proceeding hours blurred into days filled with tears, a hospitalized child and seemingly endless medical procedures that culminated with a diagnosis of Chronic Myeloid Leukemia. 

As parents we were crushed but knew we had to learn as much about his diagnosis as possible to provide him with the best opportunities at living a happy, full life. Since that day we have come to know, Chronic Myeloid Leukemia or CML is a very rare cancer of the blood and bone marrow affecting about 1 in 100,000 people per year with the average age of diagnosis being 65 years old. Of that number only 2% of all cases are diagnosed in children under 18 years old.

Due to the rarity of CML and the marginal pediatric occurrence, research and published data is limited. At present time only 4 medications have been approved for the treatment of CML in children, all gaining approval in the last 20 years. Little is known about the long term effects of these medications on children yet with CML being incurable, their daily use is the best and sometimes only chance diagnosed children have at survival. 

Full of fear and determination we set out on the battle against Reefs diagnosis which consisted of daily medications, weekly and sometimes daily blood draws, endless visits to specialists and a steadily growing list of side effects. As Reef fought his battle with each passing month it felt as if more of his childhood was stolen by his symptoms. As mentioned, little is known about the effects of CML treatment on children which creates an environment riddled with unexpected twist and turns. As parents we make an unspoken promise to our children to fiercely protect and nurture them on their journey to adulthood. While the battles look a little different than we had originally anticipated the goal remains the same, to give Reef the best, most fulfilled life regardless of the obstacles in our path.

We knew we had to find a way to improve his quality of life and his current treatment plan was falling short of that goal. So we began our search for alternative treatments that could relieve Reefs side effects. After many dead ends we finally found an immune oncologist who has dedicated his career to treating patients diagnosed with blood disorders who are not thriving under standard care. With this we also found a renewed sense of hope that our once energetic, funny, social little boy could find his way back to himself. Because immune therapy is not considered first line care for CML as of yet, it comes with an exponential out of pocket cost to our family.