Eli M.

It was late March of 2017 when we noticed Eli was having problems with his left arm. Almost two years old, Eli was lively and active, always playing with his siblings, so we assumed he had a minor injury from everyday play, but we followed up with a routine doctor’s visit for good measure. Eli’s doctor thought the same thing, so we went on with day to day life until just a couple of weeks later when Eli was having trouble turning his neck from left to right and we took him to Children’s Hospital Colorado where a CT scan revealed a mass that spanned from Eli’s brainstem down to his spine.

Just shy of his second birthday, Eli underwent an extremely complex 11-hour surgery where doctors removed all they could of the tumor. Following surgery, Eli couldn’t lift his head or move the left side of his body and it was almost a week before he was able to walk again. Pathology reports shortly after indicated the tumor was a juvenile pilocytic astrocytoma (JPA).  We were relieved to hear from doctors that Eli’s outlook was positive: he had a “good” type of brain cancer and there was a 90% chance the tumor would not come back.

But, six weeks later, our relief turned to anxiety when a follow-up scan showed Eli’s tumor had grown by 50 percent. When Eli’s team came to talk to us, they had a blank piece of paper — there was no typical plan for something like this and we were forced to figure out an entirely new roadmap for his treatment.

Eli began radiation the next week, enduring 28 treatments over six weeks that required sedation each time. The radiation treatment led to hydrocephalus (the buildup of excess cerebrospinal fluid in the brain), which meant Eli went in for another surgery to relieve the pressure and provide a path for fluid to drain away from his brain by drilling a small hole in the right side of his skull.

Eli’s neuro-oncologist, Dr. Nick Foreman, wasn’t satisfied with radiation as the only option, so during that six weeks of treatment, he and researchers in his lab analyzed Eli’s tumor and found that it harbored a rare genetic fusion called FGFR1-TACC1. From there, they screened Eli’s cells against more than 140 different FDA-approved drugs to determine which was most effective in killing the cancer cells. Trametinib, a MEK-inhibitor typically used for metastatic melanoma in adults, showed the best potential and was selected for Eli’s treatment. Eli took trametinib daily from October 2017 through September 2019. He had almost 12 months of stable scans, but his cancer is sneaky and relentless. It is rare and very hard to treat. The tumor started growing again in August 2020 and started to spread.

There is no treatment protocol for Eli’s type of cancer, so he has been blazing a trail for himself and other kids with this type of cancer. Eli was one of the first kids to try a combination of chemotherapy drugs created for adults.

Eli is the toughest kid we know. Even after enduring difficult procedures, Eli was happy and unfazed by the tremendous obstacles presented to him. Eli is doing well in preschool and is able to play soccer and has been doing great learning how to downhill ski. On the outside, Eli looks like a normal kid, but we know the true impact of pediatric cancer, on Eli and our entire family. We hold our breath for his next scan, and are continually grateful for MAF and the research that is improving outcomes for kids like Eli.

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