Winston “Jay” Coakley Jr., is a “normal” 14-year-old boy in every sense of the word – he likes to play video games with friends, more specifically Roblox, and loves the ocean; he also loves animals as he inundates his mom Tammy Coakley with cat videos he finds on TikTok. She describes her only child as a “normal, happy, laughing, teenager”, whom she jokingly said makes her want to strangle him, sometimes.
However, Jay is fighting desmoplastic small round cell tumor (DSRCT) – a rare, aggressive, mutated cancer normally found in the stomach, but that showed up on his upper-right thigh, which is even rarer.
“There are no words to describe it. It’s the worst news you could ever get,” said Coakley.
Jay is currently undergoing aggressive treatment – and has since undergone both daily radiation treatment for three weeks, as well as chemotherapy – in an effort to shrink the tumor to safely remove it.
The Coakleys were informed by doctors that if an attempt had been made to remove the tumor at the size it was when Jay presented with it, that they would not have had enough healthy skin to close the cut. And that skin grafts were not an option as Jay was doing chemo.
It was in April that Jay brought the lump on his upper-right thigh to his mother’s attention. The growth was not painful, but his parents took him to the doctor who initially diagnosed it as fatty tissue.
The Coakleys opted for a second opinion in Florida thinking they would have the growth removed. Their Florida appointment was June 8. The Coakleys had just begun summer vacation when they were thrown into a world they never anticipated.
“The surgeon looked at it and said I have an idea what it is. They took him into the emergency room.”
Coakley said the doctor took one look at the lump and they ended up at Arnold Palmer Children’s Hospitals Emergency Room. Jay was admitted that night and underwent a battery of tests – MRI, CT scan, x-rays and labs.
Coakley remembers the day that their world changed as a “whirlwind”.
“I didn’t have time to think. They just walked us up to a floor that said pediatric/oncology. I know what pediatric/oncology means, but it wasn’t registering,” said Coakley, a teacher by profession.
The following day, a biopsy was done and tissue samples sent to a scientist at Harvard in Boston. It took almost four weeks for the type of cancer to be determined, because it is rare.
“The particular cancer tumor that he has is normally found in the esophagus or stomach, so by the time they find it, it’s already spread. This showed up on Jay’s leg,” said Coakley.
His treatment would have to be aggressive.
A biopsy was done on a lymph node above his groin at the time, which confirmed that it holds the same type of cancer.
On June 24, the tumor, which is attached to a blood vessel, erupted, and is now on the outside of Jay’s thigh.
“After the biopsy, he got up to use the bathroom and it exploded. It was like a murder scene,” said the mom.
That sent the teen’s doctors into “combat mode” and prompted them to start radiation and chemotherapy. The doctors’ course of action focused radiation treatment on both Jay’s upper-right thigh and the area above his groin.
He began chemo on June 26, which made him nauseous. The smell from the tumor also nauseated him. He also started a daily three-week radiation treatment on June 28 and suffered through severe cold, and was easily tired, with a goal to hopefully shrink the tumor to remove it safely. Jay also lost his appetite a lot, so his parents leaned toward giving him whatever he wanted when he felt like eating, to ensure he eats. They also tried to ensure he got healthy stuff.
When the tumor was first measured after early rounds of radiation, it measured 39 centimeters in circumference and 21 centimeters in radius. It reduced to 29 centimeters in circumference and 18 inches in radius; then 25.5 centimeters in circumference and 15 centimeters in radius. Yesterday, Coakley said the tumor measured 19 centimeters in circumference and seven centimeters in radius.
Jay did radiation every day for six weeks. They had to stop in the middle because he was badly burned to the point he had a hard time walking and had to be taken about in a wheelchair. He had five weeks of chemotherapy.
They are now waiting for the radiation to clear his system, which could be two to three weeks, to have the tumor removed. Jay took his last radiation treatment on August 16.
“A milestone was accomplished and a small victory won,” said Coakley when her son completed radiation.
“If they had attempted to remove the tumor at its original size, they would not have had enough healthy skin to close the cut. In addition, we cannot do skin grafts as he is doing chemo,” she said.
While she knows the “battle” is far from over, she said they choose to celebrate every step.
Actually, Jay wants his mom to take him skydiving in celebration when they beat his cancer.
Coakley said radiation was not a “walk in the park” for her son.
“His skin was burnt so badly – the area at the very top of his thigh, in the crease, was completely raw making it hard and painful to walk. The radiologist had to give him a two-day break. He also needed a blood transfusion.”
Coakley has had to put in for a leave of absence as schools reopen, because doctors have “switched gears” with her son’s treatment. They are aggressively doing chemo in hopes that on September 19, Jay will have an MRI and a PET scan, on September 16. The MRI will help doctors determine how best to remove the tumor in Jay’s leg which is attached to a blood vessel. The PET scan will show them how the chemotherapy attacked the nodes in his stomach. They hope to be able to do both surgeries (stomach and leg) at the same time.
“We are praying that chemo does its job, as we won’t be able to continue with chemo once we have the surgery, until after healing,” she said.
Coakley said when they began their summer vacation, they never anticipated they would have been thrown into a world they never thought they would have to face. She said it has been a struggle.
“It’s tiresome, but it’s a different type of tired, and I don’t have time to be sick. You have to be good. His oncologist was like, ‘Are you good?’ I looked at him and said I have to be good and I have to do what I have to do.”
In July, Jay started losing his hair.
“It was a sobering reminder of what we are facing,” said Coakley.
She said Jay did not want to cut his hair even though it started to fall out. She allowed him to go through the process in his way as much as they could.
The Coakleys have started a GoFundMe account to assist with Jay’s medical expenses. Donations have come in to the tune of $17,376 raised of their $100,000 goal. A walk-a-thon fundraiser to aid Jay’s medical fund has also been organized for September 24. Registration is $15 per person or $50 per family and can be done via WhatsApp at 427-7387.
“He does have some [United States] government assistance [as an American citizen], but the GoFundMe has helped.”
Coakley said she does not have a figure on the anticipated final bill and hasn’t asked. She said they take it one day at a time.
“I just need him well … I just need him well and we will figure out the bills at the end of the day.”
While she describes the past few months, she calls it a “roller coaster” but said her family and friends have been the “village” they need.
“It takes a village, and while we may be small – we’re strong.”
Coakley also encourages people to enjoy their time together.
“Life is short – make the memories. I’m one of the fortunate ones that it showed up in the leg and we caught it, but you just never know with these things,” she said.
The mom is also thankful that she gets to stay with her son when he is in hospital, for any reason.
“I would go crazy if I had my child in a hospital and could only visit.”