My sweet and wild 3-year-old son, Phil, was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL) in the midst of the holidays in 2019 on December 27. Phil began treatment right away, following a 2½-year treatment protocol for his leukemia type and risk level. With every hospital visit, chemotherapy infusion, medication to take, procedures in the OR, or “job” he was told to do, Phil smiled, he laughed, and he cooperated (with a little encouragement and bribery of course!). There really was something so special about him. Phil was scheduled to end treatment in March 2022, but just two months before, on January 7, it was confirmed that Phil’s leukemia had returned. Our hearts were broken, and the fear of relapse that lived deep within us became an awful reality.
For the next eight months, Phil was hospitalized while he was given a variety of chemotherapy and immunotherapy combinations and endured side effects and complications from those treatments. Genetic testing provided Phil’s team with new information about an abnormal amount of mutations in his leukemia. There were also a few notable mutations that were known to be treatment-resistant. We were once told Phil's survival rate was 90-95%, but now his prognosis no longer looked so promising. Phil’s medical team continued to work tirelessly to find a cure, but in August, all reasonable options were exhausted, and we were told there was nothing more that could be done for our brave boy. Phil was brought home where he enjoyed 10 beautiful days with his family before he was called to his eternal home on September 1, 2022. I don't think it is a coincidence that Phil passed away on the first day of Childhood Cancer Awareness Month. I have promised to continue Phil's fight and the fight of all children who still need a cure.
Phil was a bright light to everyone he met. He had a deep belly laugh and the best smile. He loved his brothers, cousins, Legos, superheroes and “bad guys," and bacon, but we believe his most favorite thing was the outdoors. Being Phil's mother is a gift I am eternally grateful for.
Due to COVID, our involvement with The Leukemia & Lymphoma Society (LLS) was limited at Phil's initial diagnosis. LLS then became an active support for us after Phil's relapse when a patient/community outreach team member connected with me. She remained involved during attempted treatments, after we learned of Phil's terminal diagnosis, and after Phil died. It was a comfort to have someone check in on us and offer her love and support. I was then asked to become a Dare to Dream Ambassador and have just begun the onboarding process. I am grateful for this opportunity and look forward to becoming an active participant in transforming the treatment and care of kids with blood cancer!
Written by mother
Phil
B-cell acute lymphoblastic leukemia (B-ALL)
