I am raising awareness, fundraising and shaving my head in honor of Eli.
The following was shared by Heather, Eli’s mom.
It was late March of 2017 when Eli’s parents noticed he was having problems with his left arm. Eli, just about two-years-old at the time, was a lively and active boy, always playing with his siblings, so his parents assumed he had a minor injury from everyday play. They followed up with a routine doctor’s checkup for good measure and Eli’s pediatrician thought the same thing.
The family went on with day to day life until just a couple of weeks later when it appeared Eli was having trouble turning his neck from left to right. Eli’s parents took him to Children’s Hospital Colorado where an MRI scan revealed a mass that spanned from Eli’s brainstem down to his spine. On April 19, 2017 Eli was diagnosed with childhood cancer- a brain tumor.
Eli underwent an extremely complex 11-hour surgery where doctors removed all they could of the tumor. He was initially diagnosed with a juvenile pilocytic astrocytoma (#JPA).
As a family we had no idea and were a bit naive about the whole journey with cancer. We were told that Eli's prognosis was good: he had the "good" type of brain cancer. There was only a 10% chance the tumor would come back. However the molecular make-up of Eli's tumor did not match the initial diagnosis. At Eli's 8 week follow up scan the tumor had grown back by 50%. His tumor was then reclassified as a high grade glioma. There were no treatments to cure or even treat Eli's cancer. Soon after his 2nd birthday, Eli endured 28 rounds of radiation to buy some time to come up with a plan.
Since there was no standard of care for our situation, we had to rely on research to give us any options. Eli's neuro-oncologist, Dr. Nick Foreman, and his team of researchers analyzed Eli’s tumor and found that it harbored a very rare genetic fusion called FGFR1-TACC1. They then screened more than 100 different FDA-approved drugs and found one, trametinib, that showed the best potential for killing Eli's tumor cells. Trametinib was an oral chemotherapy developed for adults with melanoma.
Eli responded better than expected and his quarterly MRI scans showed shrinkage and stability. After 2 years on chemotherapy, Eli stopped taking his daily medication. We had hoped that he defied the odds. However, in August 2020 (9 months after he stopped chemotherapy) his tumor started to grow again.
No one can prepare you for the rollercoaster that this life takes you on. In an attempt to find a cure, Eli was placed on a new combination of oral chemotherapies. The combination made him really sick. As a result he took a break from chemotherapy in January 2021 to give his body time to heal. During this healing process his cancer remained stable, and we hoped it would stay that way. Unfortunately childhood cancer can be malicious and opportunistic. By August 2021 the cancer had spread to numerous spots throughout his brain and spine, and are searching for a new treatment to give our family more time together.
I was naive before my son was diagnosed. I heard about all the advances that were being made in cancer research and I thought that included childhood cancer. I was wrong. Our kids deserve better options for treatment; and in our case Eli deserves an option to cure his cancer.
Eli does not let cancer define his life. He is determined to live with joy and be a 'normal' little boy. He loves being a Kindergartener. You will see him running to school most days and racing his peers around the school yard. Even if it is something hard for Eli to do; he will push himself to do it. He learned how to ride a bike last summer, he is playing soccer with his peers, and loves to ski. Eli believes in the possibility of tomorrow.
