Providers were unable to find any immediate cause and since Ava was not in pain, they suggested the family take her to be seen at Seattle Children’s for further testing. They went the next day.
At Seattle Children’s, Ava got an MRI and was immediately admitted to the hospital. Providers found a tumor the size of a small orange in the back of her head. She was scheduled for surgery the next day.
“It was so hard to go through, as a parent,” said Kaitlyn. “After the brain surgery, Ava had to relearn everything — how to eat, walk and talk. Plus, she required additional surgeries for a shunt and a port.”
After a tumor biopsy, Ava was diagnosed with posterior fossa ependymoma, a rare brain cancer that often affects children her age. The cancer affects the cerebellum and parts of the brain stem, which are important for motor control, including coordination, precision and accurate timing of body motions.
“The doctors told us that if Ava’s tumor had not been discovered right then, it may have been too late,” said Kaitlyn.
The family spent a month in the hospital after Ava’s surgery, and there met with Fred Hutch and Seattle Children’s radiation oncologist Ralph Ermoian, MD, to discuss next steps. Ava caught COVID-19 before the next steps (proton therapy and chemotherapy) could take place. After she recovered, she was scheduled to receive six weeks of proton therapy and two rounds of chemotherapy.
“Proton therapy was the right choice for Ava,” said Ermoian. “It allowed her to be treated just as effectively as with the traditional radiation, but with much less radiation going beyond the tumor to areas that are important for hearing, hormone development and learning.”
The family commuted every day from Everett, about an hour’s drive, and arrived as soon as the proton therapy facility opened each morning. Because she was too young to stay still during her proton therapy treatments, she received daily anesthesia. Young children are often scheduled at the start of the day because when they receive anesthesia they can’t eat or drink beforehand. Aside from waking up upset and hungry, she had few side effects, with the most noticeable being redness on the back of her head and upper neck.
“Proton therapy was the easy part of the ballgame,” said Kaitlyn. “I’d come to the back [of the facility] once treatment was done, and there was our nurse, Amanda, holding Ava by the hand as she toddled around. I’m so glad the staff loved our queen bee,” said Kaitlyn. “She was cranky, though, so we’d get her back in the car and hand her a cheese stick, and that would take care of it.”
“It was such a pleasure to care for Ava and get to know her family,” said Ermoian. “She bounced back quickly. I checked in with her once a week; when she was done, I was happy for her but sad I would not be seeing them as often.”
After Ava was done with proton therapy, she had two months of chemotherapy, which was very hard on her and led to some hearing loss and poor appetite. She finished all treatment in January and an MRI in April confirmed no evidence of cancer.
Now Ava is back to being the toddler her family once knew — loud and sassy. She’s back in daycare and likes to make up stories. She loves the movie “Shrek” and to imitate Donkey, and she is learning as she should be. She turns 3 in July.
“I am so grateful for all the doctors and staff. They are wonderful,” said Kaitlyn. “They really helped me keep a level head when I thought I was losing it. It was an amazing experience for an unfortunate circumstance. I still mention proton therapy and Fred Hutch to other families all the time.”
