When Ava Johnson began having headaches two years ago, her family suspected something was wrong. When the vomiting began, that fear was confirmed.
“We had to rush her to the emergency room,” said Annie Johnson, Ava’s mother. “We found out that she had a brain tumor.”
That was the start of an incredibly long, ongoing journey for the family with an ever-shortening list of treatment options.
“She had to have emergency surgery,” Annie said. “They had to fly her to Le Bonheur Children’s Hospital (in Memphis) that day. She almost died at that point but made it through the surgery. Then we found out it was a cancerous brain tumor at that time. It was called medulloblastoma.”
It is a type of brain cancer commonly found in children, according to the Mayo Clinic.
Following the surgery, Ava was sent to St. Jude Children’s Research Hospital in Memphis, where she stayed for about a year and a half.
Ava, 13, has been through a total of 60 radiation treatments as well as multiple chemotherapy treatments.
“She’s been on five different chemos that were not effective,” Annie said.
The whole experience has been surreal for Ava.
“While I was going through chemo, I didn’t really feel much of anything,” she said. “It was just all kind of a blur. I don’t really know how to explain it. It sucked and I did not enjoy it.”
However, when she returned to St. Jude for her scan recently, she received the news that no cancer patient wants to hear.
“They told us that her cancer has now mutated into a form of cancer called leptomeningeal carcinoma,” Annie said. “It’s in her brain and spine. It’s even more rare than the original tumor.”
This was when it really sunk in for Ava.
“When I was told it came back, I think everything started to feel a lot more real, I guess,” she said. “I feel like when you’re going through everything, you usually think, ‘Oh, this is going to be OK. I’ll just go through chemo and I’ll be fine.’ But when you’re told it has come back, you just realize this is a lot more serious.”
Throughout all of this, Ava has remained positive. She finds the bright side in things.
“I have to take a lot of pills a day and they are really big,” Ava said. “I’m going to be honest, I get really nauseated when I take them. I like it better than chemo though.”
A new treatment
This type of cancer is limited in treatments as well.
This led to the family looking elsewhere for help. They discovered the Arsenceic Foundation in California, and they hope it will be an answer to their prayers.
“There is a place out in California called the Arsenceic Foundation, who is doing independent research and has shown a lot of promise with extending life and quality of life for kids with similar cancers to her, and some with the same cancer she has now,” Annie said. So, it is very promising.”
However, the treatment is not covered by insurance or St. Jude. The family is now reaching out to the community for help.
There is a fundraiser called, “Everything for Ava,” scheduled for Sunday at Zachary’s restaurant.
“We have four bands,” said restaurant owner Doug Pellum. “It starts at 12:30 p.m. There is a $10 donation to get in. We will have somebody selling food. We will be selling drinks out of the bar. They’ve also got raffle items going.”
Ava, along with Annie, Ava’s sister, Anna, her father, Steven and her grandfather, Alan, were treated to lunch at Zachary’s on Tuesday before going on a private tour of Cedarhill Animal Sanctuary.
There is also a GoFundMe set up for Ava. It had reached $520 of the $20,000 goal Tuesday night. According to the fundraiser page, this will help offset treatment costs not covered by insurance as well as travel expenses.
Ultimately, the community has rallied behind Ava and her family.
“It’s crazy,” Ava said. “I don’t think I ever expected this, all of the support and everything. It’s amazing. I couldn’t say how thankful I am for everyone’s help.”
HOW TO GO:
- WHAT: Fundraiser for Ava Johnson, including four bands, raffle, more
- WHEN: Sunday at 12:30 p.m.
- WHERE: Zachary’s in Columbus
- WHY: To help fund cancer treatment for 13-year-old
- DETAILS: $10 entrance
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You can help your community
Quality, in-depth journalism is essential to a healthy community. The Dispatch brings you the most complete reporting and insightful commentary in the Golden Triangle, but we need your help to continue our efforts. In the past week, our reporters have posted 34 articles to cdispatch.com. Please consider subscribing to our website for only $2.30 per week to help support local journalism and our community.
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