Community joins fight to fund 13-year-old’s experimental cancer treatment

OWhen Ava Johnson started having headaches two years ago, her family suspected something was wrong. When the vomiting started, this fear was confirmed.

“We had to rush her to the emergency room,” said Annie Johnson, Ava’s mother. “We found out she had a brain tumour.”

It was the start of an incredibly long and continuous journey for the family with an ever-shrinking list of treatment options.

“She had to have emergency surgery,” Annie said. “They had to fly him to Le Bonheur Children’s Hospital (in Memphis) that day. She nearly died at that time, but survived the operation. Then we found out it was a cancerous brain tumor at the time. It was called a medulloblastoma.

It is a type of brain cancer that is commonly found in children, according to the Mayo Clinic.

After the surgery, Ava was sent to St. Jude Children’s Research Hospital in Memphis, where she remained for about a year and a half.

Ava, 13 years old, underwent a total of 60 radiation treatments as well as multiple chemotherapy treatments.

“She received five different chemotherapies which were not effective,” Annie said.

The whole experience was surreal for Ava.

“While I was going through the chemo, I really didn’t feel anything,” she said. “It was just kind of a blur. I don’t really know how to explain it. It sucked and I didn’t like it.”

However, when she returned to St. Jude for her CT scan recently, she received the news that no cancer patient wants to hear.

“They told us his cancer had now mutated into a form of cancer called leptomeningeal carcinoma,” Annie said. “It’s in his brain and his spine. It’s even rarer than the original tumor.

That’s when it really sank for Ava.

“When I was told it had come back, I think it all started to feel a lot more real, I guess,” she said. “I feel like when you go through everything, you usually think, ‘Oh, it’s going to be okay. I’ll just go through the chemo and I’ll be fine. But when you’re told it’s back, you realize it’s much more serious.

Throughout it all, Ava has remained positive. She finds the good side of things.

“I have to take a lot of pills a day and they’re really big,” Ava said. “I’ll be honest, I get really nauseous when I take them. I like it better than chemo.

A new treatment

This type of cancer is also limited in treatments.

This led the family to seek help elsewhere. They discovered the Arsenceic Foundation in California, and they hope it will be an answer to their prayers.

“There’s a place in California called the Arsenceic Foundation, which does independent research and has shown great promise in extending the lives and quality of life of children with cancers similar to her, and some with the same cancer as her. ‘she has now,’” Annie said. So it’s very promising.

However, the treatment is not covered by insurance or St. Jude. The family is now appealing to the community for help.

There’s a fundraiser called “All for Ava,” scheduled for Sunday at Zachary’s restaurant.

“We have four groups,” restaurant owner Doug Pellum said. “It starts at 12:30 p.m. There is a $10 donation to get in. We will have someone selling food. We will sell drinks at the bar. They also organize raffles.

Ava, along with Annie, Ava’s sister Anna, her father Steven and grandfather Alan were treated to lunch at Zachary’s on Tuesday before taking a private tour of Cedarhill Wildlife Sanctuary.

There is also a GoFundMe configured for Ava. He had reached $520 on the $20,000 target Tuesday evening. According to the fundraising page, this will help offset processing fees not covered by insurance as well as travel expenses.

In the end, the community rallied around Ava and her family.

“It’s crazy,” Ava said. “I don’t think I expected this, all the support and everything. It’s incredible. I couldn’t say how grateful I am for everyone’s help.


HOW TO GET THERE:

  • WHAT: Fundraiser for Ava Johnson, including four bands, raffle, more
  • WHEN: Saturday at 12:30 p.m.
  • WHERE: Zachary in Columbus
  • WHY: To help fund a 13-year-old’s cancer treatment
  • DETAILS: $10 entry

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