Our inspiration for WillStrong
Will was diagnosed with Acute Myeloid Leukemia (AML) on December 18, 2018 after experiencing a handful of weeks of “just not feeling right”. He had just turned 14 and, prior to diagnosis, was a very healthy, vital and strong kid and no history of cancer in our family.
The sub-type of Will’s leukemia put him immediately into the “high-risk” category (he also had central nervous system involvement which caused damage to his pituitary and an additional diagnosis of diabetes insipidus). The first two highly-aggressive rounds of chemotherapy had very little impact on his disease burden so we began the process of searching for clinical trials.
We learned Will would need a bone marrow transplant (BMT) to save his life and, fortunately, both big brothers were perfect matches. In the meantime, Will participated in a clinical trial that did have a considerable impact on the percentage of leukemic blasts in his bone marrow so he elected to repeat the same treatment regimen in hopes of achieving enough “remission” to move forward with a transplant.
It was a “Hail Mary” but, miraculously, the results of his bone marrow biopsy revealed he could proceed! The timeline for transplant was very aggressive but we knew it was his only hope for further treatment and big brother Stathi was waiting in the wings ready to donate his healthy marrow the very moment it was needed. We very much felt if Will could get through BMT then perhaps he could defy the odds and come through his diagnosis victorious.
Will was an absolute warrior throughout and walked out of Colorado Children’s Hospital on May 28, 2019 after being inpatient for almost 6 months. He began the arduous task of recovery from transplant and we started to see the light at the end of the tunnel.
Unfortunately just before Will was to hit his +100 day milestone of transplant we learned he had relapsed with active disease.
Will chose to hit the pause button before making any big decisions for next steps and was able to start his freshman year of high school and set his sights on some milestones of his own. He wanted time to be a “normal” kid, go to school and football games and attend homecoming. He was able to do that and more and we all thrived as we followed our son’s lead by living in the moment; he gifted us the space to rest, recover and exhale before starting the fight once again.
Will started salvage chemo for relapsed AML in hopes of bridging the gap until he became eligible for emerging CAR-T trials for AML that were not yet enrolling pediatric patients. He responded beautifully to the first round however in the midst of the second his AML made a fierce comeback. In cases like Will’s turning to additional and aggressive chemo options pose much risk for life-threatening complications with little effect on disease burden and he literally ran out of viable options.
Will chose to live out the rest of his days at home, the place he loved best surrounded by those he treasured most, his family and friends. Two months later and exactly 14 months after he was diagnosed Will laid down his sword and ended his fight against AML. Forever 15 and Forever loved.
Will was passionate about raising awareness and funding for childhood cancer so other kids would have better and kinder treatment options in the future. We will continue the work in his memory and have founded the WillStrong Foundation, dedicated to doing just that. Our primary focus is on pediatric leukemias and AML specifically as it is one of the more prognostically poor diagnoses and particularly underfunded.
Will handled his terminal diagnosis with maturity and grace and quickly set his sights on raising funds for childhood cancer research as he felt strongly that kids like him shouldn’t be told “there’s nothing more we can do”.
We at WillStrong invite you to be an important part of how we CAN do something more for kids like Will. We will use your donation respectfully and efficiently in our efforts to help bring more precise and less toxic treatments to the table. Will’s team at Children’s Hospital did their very best but they were limited to what they had in their arsenal and it, quite simply, wasn’t enough.
We invite you to be an integral part of keeping Will’s fighting spirit alive as we continue to write his story for him and, more importantly, strive to give anyone facing a daunting diagnosis a better ending to their own story.
While in treatment Will was often confined to his hospital room. In order to satisfy his creative and entrepreneurial nature he opened up a little online clothing business featuring his own designs. Soon after he began donating portions of his own proceeds to childhood cancer charities and in in this spirit we have kept the store open and ALL proceeds now go directly to WillStrong Foundation. Shop with purpose and help us help others!
WHY WE EXIST
Prior to my own son’s fateful diagnosis, I was very ignorant about childhood cancer. Blissfully unaware, I assumed that the vast majority of kids survived their diagnosis and recovered to live full and functional lives. While there are many success stories, there are far less than there should be.
I bore witness as Will endured incredibly harsh and archaic chemotherapies that destroyed his entire system and did little to knock out the cancer. He did everything asked of him and more and still, he ran out of options and lost his life to cancer 14 months after he was diagnosed. If Will had survived he would have lived with a high chance of a second relapse among other possible health issues including cardiac problems, other organ failures, loss of fertility, and endocrine/autoimmune issues just to name a few. Up to 95% of survivors struggle with chronic health issues for the remainder of their lives and too many survivors eventually succumb to organ failure or secondary cancers.
“Yesterday is gone, tomorrow has not yet come. We have only today, let us begin.”