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READ MOREPublished on September 28, 2023 in Survivor, Event Participant, Ependymoma
Two-year-old Kevin M. lies in his hospital bed watching his beloved Puppy Dog Pals show, oblivious to the monitors beeping around him as a pediatric patient with ependymoma. His parents, Danielle and Duane, are nearby, trying to keep the toddler entertained between the pokes and prods that come with being in the hospital. Kevin’s nurse enters the room to do a routine line change, and Kevin shouts, “I did it!” as soon as he finishes. The phrase quickly turned into the family’s slogan as they navigated a 53-day hospital stay, treatment, and a newborn baby brother.
Only two months earlier, in late 2018, Kevin became suddenly sick — quickly transforming from energetic, curious, and happy to lifeless, lethargic, off-balance, and randomly throwing up. He also began experiencing unusual pain and would break down if something touched his head, like for a haircut or shower.
Kevin’s pediatrician ordered test after test to get to the bottom of his symptoms. After endless appointments, exams, ultrasounds, X-rays, and bloodwork failed to provide a cause, the doctor ordered a CT scan at the local emergency room. Following the test, a doctor told the family, “We found a large mass in Kevin’s brain, and we have an ambulance on the way to transfer Kevin to Oakland Kaiser.”
“Danielle and I couldn’t begin to process what was just told to us,” Duane shared. “It was so much to process, especially after welcoming Kevin’s newborn brother only two weeks prior. All I can remember is crying and everything being a blur. Kevin and I went by ambulance to Oakland Kaiser. We all moved into the hospital for the whole time Kevin was there.”
Kevin was sedated the following morning for an MRI that displayed a baseball-sized brain tumor. He underwent a nine-hour brain surgery to remove the tumor.
Pathology later confirmed the tumor to be grade 3 ependymoma. About 200 children in the U.S. will be diagnosed with ependymoma each year.
Kevin needed a second surgery — a tracheostomy — because he could not swallow his saliva. They also placed a feeding tube and a Braviac line.
“A new reality and new set of fears began,” Danielle explained. “I’ll never forget the feeling and grief that I may never hear the sound of his voice again. Another hard part was having to make such huge, life-or-death decisions on the spot. We literally went from deciding what park to go play at to what cancer treatment was best for our child.”
After spending Thanksgiving, his second birthday (Dec. 4), and Christmas in the hospital, Kevin’s medical team cleared him to return home and start his 33 rounds of radiation.
Danielle and Duane quickly learned that they needed community support. When friends and family offered to help, the couple accepted, even though it was difficult for them to do so. They also took advantage of outside agencies and programs their hospital social worker shared, from a PG&E discount to donated toys to rent assistance.
“Life immediately after hospital was chaotic, driving to radiation on a daily basis,” Danielle explained. “It was a bit overwhelming being out of our comfort zone, ‘the hospital bubble,’ where we always had a nurse or doctor handy. When you’re in that situation, it’s completely out of your control. You have to sit on the sidelines; the unknown is just the worst.”
A family friend who worked for the National Brain Tumor Society connected them to the organization and shared additional information and resources. Through their research and a second opinion from another large hospital, the family was confident Kevin’s treatment would end with successful surgery and radiation.
Kevin and his family first registered for the Northern California Brain Tumor Walk in 2019 to become a part of the brain tumor community and gain another area of support. In June 2023, the family even spoke at the event to share their story and encourage other families facing brain tumors.
“I have 20+ years experience with ALS Walks, as my father died of ALS in 2001,” Danielle explained. “I knew signing up for a brain tumor walk would be a great way to meet others in the brain tumor community, gain support, and raise money and awareness. I already knew how to be a successful team captain and get others involved. The more funding they can get, the more research they can do.”
In addition to the Northern California Brain Tumor Walk, Kevin also participated in a life-changing brain tumor camp for a couple of years, where he made friends going through their own brain tumor experience.
“It’s a phenomenal resource for families in the fight, in treatment, in recovery, or 20 years after diagnosis,” Danielle shared. “All families there have a child with a brain tumor in one of the various stages. There is patient, parent, and sibling support. Kevin now has an entire group of friends who are brain tumor survivors — real camaraderie.”
Today, Kevin is four years cancer-free and has progressed to yearly scans.
“Kevin is a rockstar when it comes to scan days,” Duane said. “He is excited to see his friends in the hospital and have his pictures taken in the ‘spaceship.’ Going to the hospital brings back so many emotions, but Kevin’s uplifting spirit makes it easier for me.”
The first grader enjoys building LEGOs, playing baseball and soccer, riding his bike, and climbing the monkey bars.
“He loves being a big brother to Kellan and his little sister Kirby,” Duane said. “Kevin shows no side effects of going through everything he did. Kevin is a sweet boy, always happy, and always works so hard to be first at everything. He has a fighter’s spirit, and he’s my hero.”
Together, we can advocate for pediatric patients and their families today while fueling research with the potential to become the treatments and cures of tomorrow. When you make a gift this Childhood Cancer Awareness Month, you propel research and treatments forward for the more than 13,600 children living with a primary brain tumor today.
“Childhood Cancer Awareness Month is a time to bring awareness to a horrific disease,” Danielle said. “People donating to these causes, such as the National Brain Tumor Society, are the reasons there are already clear-cut, effective treatment plans in place. These treatment plans are the reason Kevin survived a grade 3 ependymoma.”
TAGGED WITH: pediatric brain tumor, pediatric cancer, Ependymoma, #CCAM