KANSAS CITY, Mo. — May is Brain Tumor and Brain Cancer Awareness Month and families around the Kansas City area, and the nation are relying on clinical trials to help save their loved ones.
That includes families like the Halls.
“We knew there was a problem, but never did we imagine this is what it was," said Matt Hall, father of 5-year-old Reece Hall.
Life changes quickly.
"This all happened overnight, literally overnight," Hall said.
The change in Reece's life was drastic. He was a happy-go-lucky kid who loved to play outside and ride anything with two wheels. Then suddenly in 2020, Reece got sick and was rushed to the hospital.
“Immediately took him back to the scan, put him under a CT machine and they found a brain bleed," Hall said.
A few weeks later, doctors gave this family devastating news.
“After the resection is when we found out the results, GBM grade four," Hall said.
Reece has a brain tumor and it was cancerous: Glioblastoma, Stage four and doctors estimated 14 months to live. But now he's beating all the odds. He had surgery and is currently in a new Pfizer clinical trial for pediatric brain tumors to stop the tumor growth. Hall said he believes the chemotherapy that his son is taking is for non small cell lung cancer.
“The first run at it was pretty hard and kind of took a toll," Hall said.
There is no new growth with Reece's tumor.
Neurosurgeons around the country rely on clinical trials when it comes to treating brain cancer and brain tumors.
“Clinical trials are scientifically driven ways to improve the standard of care, and right now the standard of care for brain cancer stinks," Dr. John Boockvar, Vice Chair, Lenox Hill Neurosurgery said.
Dr. John Boockvar, an internationally known neurosurgeon and featured in the Netflix hit show, "Lenox Hill" said the key is breaking through the barrier to get to the brain that's called the blood brain barrier.
"The blood brain barrier is something that we evolutionary built to prevent things that are in our bloodstream from getting into our brain," Dr Boockvar said.
He is currently working on several trials with his team back in New York City. This is his explanation of one of them.
“So my team can actually get a micro catheter like all the way deep into the brain in like 20 seconds. I can’t get a cup of coffee, by the time they're at the doorstep of the tumor. So using those techniques and those technologies my guys now thread microcatheter into the brain tumor can open up the blood-brain barrier just in the distribution of the brain tumor and give high doses of drugs directly into the tumor," Dr. Boockvar said.
That's where nonprofits like Head for the Cure come in, which is based in KC, is working to raise money for research, trials and bring survivors and patients together and give them vital help.
“We need more awareness of it. There are not a lot of options for pediatric brain cancer or brain cancer in general. It seems to be harder when it comes to kids," Hall said.
His family believes Reece's story will change the world.
“I see Reece becoming the poster child for brain cancers and this trial and I can only hope that he’s going to be the person that sets it up for kids to come up behind him and he’s going to make it," Ashley Caldwell, Reece's mom said.
To learn more about Dr. Boockvar and his trials, click here.
