Update on our Will - he passed away at home on February 18th, 2020. Forever 15 and Forever loved - may his memory be eternal and good will flow from all who were inspired by his story. We thank you for your love and support. With love, Stuva, Claudia, Stathi and Jack.
Will was diagnosed with high-risk acute myeloid leukemia on December 18, 2018. His cancer was considered refractory as it did not respond to the first two rounds of aggressive chemotherapy. He participated in two rounds of a clinical trial and became eligible for a bone marrow transplant.
The timeline for his BMT was compressed and risky due the the nature of his cancer but he remarkably came through with no major complications despite everything his body had already endured. We thought Will was going to be the "miracle" story but sadly he relapsed a few months later.
Will's options for curative treatment were limited because of the genetics of his AML. He decided to pause and start his freshman year of high school and enjoy a bit of normal teenage time before making any big decisions. Will had a few months of able to create amazing memories with his family and friends, attend school, football games and even take an amazing girl to homecoming before starting active treatment again.
We had our eyes on a clinical trial his team felt offered the best curative option (but that was not yet enrolling pediatrics). Meantime Will started chemotherapy to help knock down the burden of disease and bridge the gap until he could be enrolled. He responded beautifully to the first round but in the midst of the second his cancer made a fierce comeback.
In cases like Will's, AML can become increasingly hard to treat as repeating intensive chemo poses many risks with possible little effect on the cancer. He made the decision that he did not want to go through any more treatments but would rather come home and stay home.
Will was home with us on hospice care for two more months and thanks to his palliative care team and enjoyed life on his terms - spending time where he is happiest and with his family, with whom he is happiest.
We are super proud of our "Mister Will" as he has come to be known...he was involved every step of the way and has led us all his example of maturity and grace even in the most challenging times. He became an advocate for action for and awareness of childhood cancer and we will continue to work in his honor when he is gone - we created The WillStrong Cancer Foundation in his memory and are actively funding research for pediatric AML.
Thank you for supporting Will and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick's Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
