This year I ride in honor of Jack Paul.
Jack was diagnosed with B-cell acute lymphoblastic leukemia at the age of 16.
Over 5 years, Jack endured every possible treatment including chemotherapy, cellular therapy, radiation and a bone marrow transplant.
Despite all of Jack's efforts and the efforts of his team at Children's Hospital to fight this cancer, the cancer just wouldn't give up.
Less than 2 months after learning that his cancer had relapsed, we lost Jack just 2 weeks ago on February 16th at the age of 21.
From his early childhood, Jack always displayed a big heart and genuine concern for those around him. In middle school he developed a passion to help others. He was very active in the Boulder Expand program as a mentor where he met many of the kids who would become his lifelong friends. In high school he served in the Boulder Police Cadet program where he discovered his passion for law enforcement.
At the time of his death, Jack was in the midst of attending college to receive a degree in criminal justice with the hope of pursuing a career as a detective. All Jack wanted was to be able to be a healthy college student but his unrelenting cancer would not allow for that.
Only 4% of all federal funding for cancer research goes to studies on pediatric cancers. Please donate to help increase the funding for childhood cancer research at Children's Hospital in order to increase the chance of survival for kids like Jack. This research helps to increase and improve childhood cancer treatment options around the country and the world.
Wheels of Justice, the Courage Classic team I ride with, raises money exclusively for the cancer center at Children’s Hospital. Each year, the team rides in honor of a child whose life was stolen by cancer. This year we ride for Will Maniatis.
Will had just turned 14 when he was diagnosed with Acute Myeloid Leukemia on December 18, 2018. After two highly-aggressive rounds of chemotherapy and a bone marrow transplant, Will and his family learned that his cancer had relapsed after hitting his +100 day milestone of transplant.
At that point, will chose to pause treatment and live his live like a “normal” kid. He began his freshman year of high school and set his sights on some milestones of his own.
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.
Will’s body did not respond well to the salvage chemo and there were no more viable options for treatment.
2 months after beginning that treatment and exactly 14 months after his initial diagnosis, Will laid down his sword at the age of 15.
My personal connection with Children’s Hospital began in September of 2020 when my daughter Amanda was diagnosed with osteosarcoma.
Amanda is currently attending University of Oregon and is thriving however, she needs to be followed by Children’s oncology periodically for 10 years as osteosarcoma is a very aggressive cancer that has a very bad habit of relapsing…especially in the lungs.
Amanda’s tumor was in the top of her tibia. Her surgery to remove the tumor involved removing the top of her tibia and fibula and bottom of her femur which translates to an entire knee replacement plus additional bone being removed versus bone that is removed in a “standard” knee replacement.
She now has titanium “hardware” where the bone used to be. With this, she cannot jump or run and her hardware has a fairly short lifespan and is expected to need to be replaced about every 15 years. She is afraid to ski (which she used to LOVE doing) and to do other activities that kids her age love to do because any fall could cause the hardware to break.
Additionally, Amanda’s hearing and heart need to be checked periodically post-treatment. This is because the chemotherapy that is given for osteosarcoma can seriously damage hearing AND heart function.
Amanda also needed to undergo lung surgery because there were a few concerning spots in her lungs and osteosarcoma has a very bad habit of metastasizing to the lungs. We were extremely fortunate that the parts of the lungs which they removed were not cancerous, yet the surgery and difficult post recovery is of course something we would have preferred for our 17 year old daughter to not have to endure.
Of all the families with a child with osteosarcoma that I connected with during Amanda’s treatment, the majority of those kids are not still here with us. One of those kids is Jaden Ramsey who we lost to Osteosarcoma nearly 3 years ago. I met Jaden’s mother Meri during Jaden’s last visit to Children’s Hospital where he took his last breath the same day Amanda was discharged after one of her chemotherapy treatments.
Jaden was diagnosed with osteosarcoma in April of 2020 and endured grueling treatment and surgeries until he laid down his sword exactly one year later.
We lost Jaden shortly after his 19th birthday. Just this past February 17th, Jaden would have turned 22.
On April 18, 2021, Jaden’s dying wish was to donate his body to research so that, as he said many times, “no other kid and no other family has to go through this”.
Clearly, better treatment options need to be found for osteosarcoma (found more frequently in pediatric patients than adults) and for every other type of pediatric cancer so that these kids need not endure so much pain and suffering and so that none of the diagnoses carry a death sentence.
Of course the ultimate goal is to find a cure but in the meantime, we need to find ways to make the outlook for all these kids SO much better.
