“What’s gotten us through this is watching Elliott and his attitude, the kid is something else.” – Jessica, Elliott’s mom

When the difficulties of life overwhelm her, Jessica Ortega turns to a cushy memory: she recalls the Nerf-filled afternoons when her 7-year-old son, Elliott, would transform from a kid fighting cancer to just a typical kid. Like clockwork, he and his buddies would emerge from their hospital rooms at 4PM and stage Nerf gun wars with the nurses deep into the night.

“I truly think that’s what got him through all of this, because the older they get, to be stuck in a room feeling like crap all the time, you’re going to end up depressed,” said Jessica. “Now he actually has something to look forward to.”

No parent expects the first childhood cancer diagnosis. Fewer still expect a second. A third is practically unthinkable. Yet that’s what the Ortega family faces after Elliott was recently diagnosed with acute myeloid leukemia (AML) in September 2017. The journey started with hepatoblastoma in 2012, continued with juvenile myelomonocytic leukemia (JMML) in 2015 and finally resurfaced last year after doctors discovered minor bumps on his head and spine.

The latest diagnosis came when Elliott was only a month shy of being two years cancer-free. The cascading effects of his treatments have made Elliott a special case, even among other kids fighting cancer.

“All of the chemotherapy treatments have to be specifically cocktailed just for him,” said Jessica. “We have to be careful of his transplanted liver so that he’s not rejecting it, but now he’s having some other issues with his kidneys.”

At first, the family just felt fortunate they caught the first cancer. Jessica’s husband, Raymond, had just moved from Nevada to Wichita, KS for a job. Still in Nevada, Jessica decided to take all her kids in for one final check-up before they headed east. It turned into the longest day of Jessica’s life.

Elliott’s doctor noticed several irregularities. A rapid series of tests followed, from a regular check-up to an ultrasound to surgery, a process that finished with his first chemotherapy the next day. The second diagnosis was a similarly arduous process. The third brought additional risks.

“More complications can arise because he’s been through so much, the chemo has caused so much damage,” said Jessica. “We really had to sit and think about quality of life versus treatment, what was going to be better for him. That was heart-wrenching.”

Ultimately, they chose treatment, despite the complex precautions Elliott requires for even simple flu symptoms. Ordinarily a kid would head to urgent care, receive their medicine and be done with it. For Jessica, it’s more like a labyrinth.

“With him, a fever is not just a fever,” said Jessica. “It’s making ten different phone calls, then going to the ER where ten different doctors tell me what is going on. It’s chaos, nothing is simple.”

Another complicating factor is supporting Jessica’s daughter Lilee, who turns 10 in August. The precautions Elliott requires often prevented Lilee from participating in typical activities like sleepovers since any outside germs in the house could be deadly for Elliott. The loss of these childlike opportunities is what attracted Jessica to ALSF.

“There was nothing out there for siblings and my daughter, like any other sibling, needs support,” said Jessica. “My mom came across ALSF and told us about SuperSibs so we signed Lilee up.”

Despite the hardships, Elliott continues to wow his medical team with his progress. He’s completed treatment but has monthly follow-ups at Children’s Mercy Kansas City. Now, Elliott is getting geared up for baseball and soccer seasons this summer. His family relies on those improvements for their own strength.

“What’s gotten us through this is watching Elliott and his attitude, the kid is something else,” said Jessica.

Well that, and a little Nerf gun fun.