“I took Isaiah to urgent care because he had back pain and couldn’t walk after a fall. They found he had a compression fracture. I knew at that moment that this couldn’t be good- kids don’t just break their back.”

   18 months later, Ayla Benavides, Isaiah’s mom would share, “There is no reason to not believe this is an absolute miracle. We (ok me) have probably cried every day, prayed the same prayer every day. The worry doesn’t leave. The anxiety doesn’t go away. The questions and severe PTSD are debilitating. But God.”

This family’s faith carried them through with a fierceness that shines to all those who have met them.

  Looking back on the journey that almost 4-year-old Isaiah was about to embark on, the diagnosis and treatment for Stage 4 Embryonal Rhabdomyosarcoma with FGFR fusion, Ayla remembers, “We were sent to DeVos [Devos Children’s Hospital in Grand Rapids, Michigan] for an MRI, where they found multiple spots suspicious for malignancy in his spine, both femurs, pelvis and rib area. It took 12 weeks for them to confirm that it was a cancer, and at that point, it had spread so rapidly there was almost no hope for him.”

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   The overwhelming majority of childhood cancer families never envisioned how life would change in a blink before diagnosis day.

No one is a childhood cancer family until they are.

Then all bets are off.

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Ayla would later share on social media that the treatment was ‘‘18 months of living hell” for Isaiah, also known as ‘Zay’ or ‘Warrior Zy” by his faithful supporters of family and friends. The Benavides family, enveloped by their supporters, have remained steadfast in their faith despite hearing, “There was no hope for him.” Ayla went on to share “He was given months, a prognosis of death.”

[Read more about Rhabdomyosarcoma HERE]

  “This [type of rhabdo diagnosis] makes it an intermediate risk and still very aggressive, but there is often hope for a better prognosis [than other types of Rhabdo]  when this particular type has not spread. The problem is, it was already in multiple spots of his bone when they found the cancer. They told us his chances of surviving were still minimal and wanted us to talk to the palliative care team and continue with treatment.” The team researched for something that would be effective and took a chance on a newer trial that is meant to target the unique FGFR fusion found in Isaiah’s cancer.

   On July 28th, 2022, Ayla shared on Facebook, “ (The) MRI revealed horrible worsening. He has tumors all over his spine from the thoracic area down to his sacrum that have grown and increased, and also hips, pelvis, sternum, ribs and both femurs all the way down to his knees.

   He has pathological fractures on both sides of his pelvis, several collapsed vertebrae and 6-7 more lesions in his spine (maybe more). His legs/pelvis are so bad and weak, he can’t even stand on them without the chances of them collapsing. He is now wheelchair bound and strict bed rest for who knows how long. If his femurs break he will have surgery with screws and rods to stabilize them. He can’t do anything without being in severe pain. We are scared to even move him.”

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   Cancer does not care what age you are. It is an aggressive, destructive and life threatening beast that is relentless and fast moving within children thanks to their rapidly growing bodies. It’s never the same as in adults and must be targeted differently because of these unique developmental differences, which is yet another reason we must seek more specific knowledge and research on cancer that affects our children.

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How did the Benevide’s family survive this?

  “My boy has had 4 procedures, 66 weeks of chemo and 6 months of clinical trial therapy with an additional 6 months to go.” Ayla, Isaiah’s mom, shared just before his port removal January 4, 2024. “He’s been through so much and I’m trying to advocate as best as I can for him but my mama heart is just tired. I’m so happy we made it to this point but another surgery is just as nerve-wracking as the first.

 “I have never, EVER wanted to relieve that again,” Ayla shares on the one year anniversary of diagnosis day. A day no childhood cancer family will ever forget, she explained “The acid in my stomach rises with even a thought.” A year later she reflects on the change, “Amidst all of this, it’s also a very special day for us. We are hospitalized for our very LAST inpatient chemo.” Isaiah had survived a cancer that had tried to kill him; his mom, his whole family is so grateful and thankful for their faith that has carried them through so many valleys. Fasting before scans and praying without ceasing would be a sacred ritual that would take place every few months as they monitored his condition and response to all the therapies that they were attempting to destroy the cancer with.

“There were many moments on that cold hospital floor inside the four walls of a miserable hell, I begged God. We begged Him on our knees at the side of his bed that He would save Isaiah’s life. I haven’t stopped praying for it since. I don’t think I ever will.”

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   A transformation happens for almost all childhood cancer families; there is no going back to taking life for granted or not seeing how valuable and precious our children’s lives are.

Life takes on new meaning.

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   On Feb 24, 2024, when chemotherapy was finally finished, Ayla explained that they were told “...He is at a highest risk for relapse being off chemo. But Isaiah has proven to show them up. He is incredible!!!”

   “It was a rough day,” speaking of the scans following frontline treatment on March 11, 2024, “but faith was what got us through. The scan showed nothing but goodness. Fractures healed and aligned 100%. No presence of Rhabdomyosarcoma anywhere in his sweet, precious body. No disease present waiting to attack.  Nothing but an absolute miracle. I’m happy to say our oncologist was on the verge of tears when she called. I’m so happy I can’t stop crying! MY BOY!”

   Ayla went on to share, “There’s so many emotions about today and I’m just trying to stay grateful for where we’re at- for all this time that we’ve been able to have with him. There is not a day that goes by that he doesn’t just continue to amaze me in every single way.

I just cannot simply imagine life without him, and it’s crippling to know that we almost did.”

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Elevate Childhood Cancer Research and Advocacy is grateful to the Benavides family for sharing Isaiah and their families faith filled experience as they navigated his diagnosis that has forever changed their lives. It’s with courage and heartache that families share these trials and we recognize that with these shares it advances knowledge that came hard learned to those within the childhood cancer community. We need others to recognize the great need for more awareness, education and research for all those diagnosed with childhood cancer, our children are the rare ones, are you ready to be a life changer for children like Isaiah? Elevate is committed to dramatically improving the lives of those diagnosed with childhood cancer, specifically rhabdomyosarcoma, but we need the community around us to join our mission.

Click HERE for more on how to get involved!

Learn more about our Elevate kid, Isaiah HERE!

Donate directly through Isaiah’s Elevate kids page and be a difference maker for kids like Isaiah and families like the Benavides!