Even though funding has increased in the federal budget allocation, pediatric cancer doctors and researchers say there’s plenty of room to grow. There are also key opportunities to help improve quality of life for patients as they grow into adulthood.
For Joey Clark it all started with a swollen lymph node in his neck that antibiotics didn’t help.
The 8th grader who love cross country said he struggled to run.
“I could barely run two miles and I was saying, ‘Man, something’s wrong,’” he said.
He found he could no longer keep up as his body started to slow down.
“(He was) losing weight. (He was) pale, kinda green tone,” Joey’s father Mike Clark said.
“We saw four different doctors before finally somebody said, ‘Oh there’s something wrong,’” Joey’s mother Angel Clark said.
A trip to the emergency room and blood work offered some clues.
“The doctor said, ‘Do you know what lymphoma is?” Mike Clark said.
“It was terrifying to be honest,” Joey Clark said. “13-years-old, hearing that you have cancer it was like, ‘Whoa.’”
He was ultimately transferred to Advocate Lutheran General’s Children’s Hospital. Hematologist oncologist Dr Amir Siddiqui confirmed the diagnosis.
“In the ‘70s, when we had a patient with cancer, the chance of cure was about 60%, And today that number is pushing closer to 90%. So outcomes have improved quite a bit,” Siddiqui said. “I tell a family, ‘The results came back, your son or daughter has cancer.’ And then you pause for a moment because the shock just hits everyone in the room, including myself. Every time I say it, it’s a shock.”
“I was too young to die. That had never really gone through my head before,” Joey Clark said. “Dying at 13? That’s terrifying and I have so much to live for.”
Chemotherapy started immediately — four cycles in total — to treat his b-cell lymphoma.
“We used a lot of traditional chemo for Joey, but we also used some modern medicines as well,” Siddiqui said.
Joey Clark benefitted from what’s called a monoclonal antibody treatment. Unlike traditional chemotherapy that stops cancer cells from dividing, a drug called Rituximab helped his body’s own immune system kick into action.
“It doesn’t kill the cell. All it does is bind. And when it bonds it triggers the immune system and then Joey’s own body fights the cancer,” Siddiqui said.
There have been other key advancements — personalized medicine, targeted treatments and immunotherapy have all helped increase cure rates.
“There’s new drugs being used in places we didn’t have drugs before,” Siddiqui said.
Like for neuroblastoma, a newer medicine — Dinutuximab — is helping patients with high risk and recurrent disease.
“We’ve been able to use that medicine to cure people who weren’t curable 10 years ago,” Siddiqui said.
Still, there’s room for improvement.
“Some of our meds lead to infertility, some lead to heart problems, some, believe it or not, cause secondary cancers,” Siddiqui said. “We have a huge opportunity there to modify the drugs we give to change those less off target effects. We can fight cancer without causing problems for kids 40 years later.”
With his treatment behind him, Joey Clark and his family are looking ahead with gratitude.
“All the hard work and sweat and tears and late nights of all the medical professionals putting their heads together to have the treatments we have today,” Angel Clark said.
“They’ve helped me through so much in probably the hardest time in my life,” Joey Clark said. “They brought me back from almost death.”
Every charity event — no matter the size — helps move the needle when it comes to awareness and funding.
On Friday, WGN’s Pat Elwood is involved in a fundraiser for St. Baldrick’s, raising money for childhood cancer research.
Watch on the WGN Midday News as he shaves his head for charity.