(WBTV) - Meet Cooper Burrell, the newest amazing one of our #MollysKids. This 15-year-old is in the 10th grade at Clover High School. He lives with his parents (Robert & Tracy), 24-year-old brother (Grayson), Miniature Schnauzer (Tucker), and three cats (Mira Belle, Lily, and Chevy).
Cooper loves playing video games, watching YouTube videos, and… like many 15-year-olds… is learning how to drive. He says he’s excited about getting his first car and has high hopes to make it a “Fast and Furious type Japanese car.” He is also involved in AFJROTC (Air Force Junior Officer Training Corps) in school.
This smart, driven teenager, also battles cancer.
Last October 28, 2020, Cooper was diagnosed with a SMARC B1 deficient, poorly-differentiated chordoma, listed at Stage 3. That jumble of long words means this: Cooper has an aggressive subtype of head and neck cancer that. Wikipedia will tell you that generally speaking, it has a poor prognosis, though it does have multiple types of therapies. Right now, Cooper is in the thick of his treatment plan, at St. Jude Affiliate Clinic at Novant Health Hemby Children’s Hospital in Charlotte.
His mom Tracy, who is an ER nurse, says it was a short-long journey to get here.
“It has only been six months since he started complaining of neck pain and neck stiffness,” she said. “But those six months have gone on forever and been life changing.”
At first his parents thought Cooper had just slept on his neck wrong or had been playing too many video games. They gave him -- like many parents would at hearing about neck stiffness -- ibuprofen. A week later, he asked to see a chiropractor.
By August, he’d been to a chiropractor twice. That doctor told them to use Biofreeze and to alternate between ice and heat.
Cooper did that, but it didn’t feel better.
So, in September, he was seen by his primary care physician. That doctor prescribed Naproxen and a muscle relaxer, and a c-spine X-ray. It came back normal.
“When he didn’t get better after about 2 weeks on the medication, his doctor decided to make an appointment for a neurologist,” Tracy said. “In October he was seen by the neurosurgeon and prescribed Gabapentin and a different muscle relaxer. The neurologist also set him up for physical therapy and for an MRI of the brain.”
The MRI was set for October 27th.
First thing October 28th, the neurologist called.
“He said they thought they saw something on the MRI of the brain and he wanted to get him scheduled for a MRI of the neck that very day,” Tracy said. “We were sent to Novant Health hospital in Charlotte for the MRI that same day. After the MRI was over, they sent us to the Children’s Emergency Room and we saw an oncologist, Dr. Bell.”
Dr. Bell said Cooper had a tumor in his neck at C1, C2, and C3.
He was admitted right then and there. Biopsies of the tumors were soon performed and a chemo plan was created. Since then, Cooper has been admitted to the hospital three more times, 21 days apart each time, for the chemotherapy. Every time he goes into the hospital he goes for 4 or 5 days.
If you’re thinking all this information is really specific with detailed medicines and dates and times, you’re right. Tracy never thought she’d be using all her professional knowledge to help navigate her own son’s cancer battle.
“He has had multiple MRIs, CT scans, and PET scans,” she said. “Cooper is no longer in pain, which is good. However, after the third round of chemo, the tumor did not shrink as much as the provider would have liked, so they want to change up the treatment. The oncologist, neurosurgeon, and the ENT doctor all think it’s time for surgery.”
Surgery will be delicate, Tracy says, by the way the tumor is wrapped around the spine. It’ll most likely take two surgeries.
While Cooper, Tracy, and their whole family await on surgery (hopefully first week of March), an oral cancer drug specifically for this SMARC B1 deficiency, Tazverik, will begin. Cooper will be on the medication about a month.... then surgery one... then surgery two... then if all is going well... proton radiation.
That type of radiation can only be done at St. Jude Children’s Research Hospital in Memphis or at Mass General Brigham in Boston. Once he’s at either of those spots, Cooper will also resume the last four rounds of chemotherapy.
“The oncologist is very hopeful that Cooper can be cured,” Tracy said. “But this type of cancer is rare, especially in children, and there isn’t a standard treatment plan.”
How is she doing? How is Cooper? How is the family?
“We are doing okay,” she said. “Cooper has done extremely well. He has been so brave through all of this. We have been overwhelmed with all the information about his condition. I mean, I am an ER nurse and even I don’t understand everything. Pediatric cancer is truly a parent’s worst nightmare.”
[A]: I appreciate Tracy’s detail. So often with #MollysKids stories, it’s easy to summarize to make the journeys more understandable to all who read. But hearing step-by-step how it’s a domino treatment plan “this... then this... then if that works, this... but if that doesn’t work, this...” helps all of us understand the difficulty of childhood cancer.
[B]: Cooper. You got this.
Please keep us updated, Tracy.
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