Nevada Union senior Tomaso Wilkins battling gastrointestinal stromal tumors, a rare cancer
Tomaso Wilkins wasn’t going to play football this year.
The 17-year-old Nevada Union senior, who also ran track, said he had fallen in love with lacrosse. Wilkins, also an avid golfer and fisherman, played for the Gold Country Stampede varsity team and decided to dedicate himself to the sport full time.
“Football was beginning to become not as much fun as lacrosse by any means,” he said. “I’m good at both, but I like lacrosse better at this point.”
A lot can change in a few short weeks.
Wilkins now spends his days suffering through a liquid diet and the effects of Gleevec, a chemotherapy drug known as “The Magic Bullet.” Every day he just hopes he feels well enough to do some fishing in the afternoon or chipping and putting at Lake Wildwood Golf Course.
Wilkins is fighting stage four GISTs, or gastrointestinal stromal tumors, a rare cancer that affects between 4,000 and 6,000 Americans every year. Most cases strike people in their 60s. GISTs are dramatically more rare in teenagers. According to the United Kingdom National Registry of Childhood Tumours, GISTs afflict about one in five million younger than 14.
HOW IT STARTED
Unlike most stricken by GISTs, Tomaso didn’t struggle with symptoms that gradually worsened.
His symptoms arose June 18, on a Father’s Day return trip from a family reunion, and they were intense.
“I was having an awful headache with pounding and really bad pressure,” Tomaso said.
His mother, Alice Wilkins, took him to Sierra Nevada Memorial Hospital. It was quickly discovered that Tomaso was bleeding internally. His hematocrit rate, which measures the amount of space red blood cells take up in the blood, was at 15 percent, well below the normal level of 30-40 percent.
Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body tissues, exchanges the oxygen for carbon dioxide, and then carries the carbon dioxide back to the lungs. Anything below 13.5 grams of hemoglobin per deciliter is considered a low count.
Tomaso’s initial count on June 18 was 4.5.
He was given a blood transfusion, placed in an ambulance and sent to Sutter Health in Sacramento.
He’d eventually receive four blood transfusions, an endoscopy and a colonoscopy.
The tests showed an ulcer, which was clamped off. But further examination of the images revealed a banana-shaped mass of tumors pushing through the stomach lining and causing the ulcer.
It was likely one of three things: Sarcoma, lymphoma or GISTs. It took three days for pathology to return a diagnosis.
GOOD NEWS, ALL THINGS CONSIDERED
As horrifying as a cancer diagnosis is, the news it was GIST was actually good. Had it been sarcoma or lymphoma, doctors told Tomaso and Alice his chances of responding to drugs were about 20 percent.
“Gleevec has an 80 or 90 percent chance of shrinking the tumors,” Alice Wilkins said. “Ultimately they told us in six or nine months they’ll know if it’s doing its job.”
If it’s not, Alice Wilkins said there are other drugs in the same family that have also proven effective.
After a 10-day stay in the hospital, Wilkins returned home with no diet restrictions. Five days later he was bleeding again and back in the hospital.
This time his hemoglobin count was 6.5.
Necrosis, the premature death of cells in living tissue, was taking effect. That was a good thing, a goal in shrinking the tumors. But it had a side effect.
“We’re praying the necrosis process will start (the shrinking of the tumor),” Alice Wilkins said. “The tumor didn’t actually get bigger, but the opening of the ulcer actually got bigger because of that necrosis process. That tissue dying is causing it to re-bleed again. … It’s a Catch-22. You want the necrosis process to happen, but because of the location of the tumor, what’s it going to do? It’s going to push right through.”
The new opening was cauterized, and Wilkins was placed on Carafate, which he takes an hour before meals and at bedtime to coat the stomach lining.
Tomaso’s outlook is good, but expensive. The Wilkins are a one-income family, and Alice Watkins has had to cut her hours back in her Mama Mia’s Helping Hands cleaning service from full time to 16-20 hours per week to take care of her son.
Alice Wilkins also wanted to clear up a common misperception: “stage four” doesn’t equal terminal.
“A lot of people think that because it’s stage four it’s terminal,” Alice Watkins said. “Stage four just means that it’s moved.”
“The goal is to take the Gleevec, shrink the tumor and take it out,” Tomaso Wilkins said. “Then you keep on taking it for a long period after so it doesn’t come back.”
The Wilkins have set up a LOVE beats cancer fund at http://lovebeatscancer.fund/project/tomaso-wilkins/. Alice Wilkins also expressed a hope that anyone with any experience with GISTs would contact her at firstname.lastname@example.org.
To contact Staff Writer Stephen Roberson, email email@example.com or call 530-477-4236.
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