Health & WellnessLifestyles

A teen’s wish: normalcy

Winston ‘Jay’ Coakley’s cancer battle and medical challenges continue

Fourteen-year-old Winston “Jay” Coakley gutted his mom, Tammy Coakley, when she heard him say, “I miss being normal.”

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. But when he learned he would have lymphedema for the rest of his life, he lay in his bed and cried.

Lymphedema is swelling in various areas of the body that happens when something affects the lymphatic system. The lymphatic system collects excess fluid, proteins and toxins from cells and tissues, and returns them to the bloodstream. When the lymphatic system doesn’t work well, the body accumulates fluid and may begin to swell. The swelling typically affects the arms and legs, but it can also affect other areas of the body.

Winston “Jay” Coakley, 14, at the attractions on International Drive, Orlando, prior to surgery on September 29 to remove a tumor from his leg. Before his surgery, doctors allowed him out of the hospital for three days. His mom, Tammy Coakley, says they took in all of the attractions on I-Drive. “We had a good day full of laughter. We had a wonderful time,” she said. 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. He has now also been diagnosed with lymphedema, which is not curable. PHOTOS: TAMMY COAKLEY

Lymphedema symptoms may be mild, causing minor swelling and discomfort. Sometimes, however, lymphedema may cause significant swelling that can be painful and cause skin issues such as infections and wounds. There is no cure for lymphedema, but there are treatments to reduce lymphedema swelling and discomfort.

Lymphedema can be a serious medical condition. A person with lymphedema can be at risk of developing infections that start in the skin. These infections may be life-threatening. Lymphedema may also lead to lymphangiosarcoma, a very rare skin cancer. Several things may cause lymphedema – breast cancer surgery, pelvic surgery, radiation therapy, trauma, infection, obesity, lack of activity, tumors, heart conditions, blood vessel issues, and kidney disease.

Jay’s doctors have also recommended that the teen’s diet be completely changed, and that he is not allowed to have starches, to help reduce swelling in his legs which can cause other complications.

“He won’t be normal where he can just eat anything,” said Coakley.

Besides wanting normalcy, she said her son also spoke of missing school and his friends, and spending time with his dad and his cats. She said he has even expressed missing spending time with his third-grade cousin “TT” even though they “get on each other’s nerves”.

“He just misses everything about his life. He misses walking properly and not having gone to the beach this past summer,” said Coakley.

Winston “Jay” Coakley’s medical challenges continue. His mom, Tammy Coakley, said it has been a struggle getting her teen son to eat, as the medications interfere with his taste buds.

She and Jay have been at Arnold Palmer Children’s Hospital where he has been receiving treatment for the past five months to reduce his tumor to allow doctors to safely remove it. Before that could be done, the tumor, which was attached to a blood vessel, erupted and presented itself on the outside of Jay’s thigh. The doctors immediately started radiation and chemotherapy on the teen to shrink the tumor to a manageable size to remove, surgically.

In the early morning hours of Saturday, September 17, Jay had to be taken to the emergency room for a spiked fever and uncontrollable pain. It was determined that the “dying” tumor was infected. Jay’s doctors decided they had to operate.

On September 20, the doctors removed the infected part of the tumor. Jay came out with the tumor still in his leg, but with a hole now inside the tumor.

The day Coakley had been waiting for since they arrived in Florida, came on September 29. The doctors were going to finally take out the tumor.

“The surgery went smoothly, and a vacuum seal was placed to cover the void where the tumor was,” she said.

The tumor was sent to the lab to ensure that all of the tumor was removed.

“Results came and the tumor was all there and that it was 80 percent dead.”

On October 4, Jay returned to surgery with a plastic surgeon for his skin flap procedure. A skin flap is healthy skin and tissue that is partly detached and moved to cover a nearby wound. Often, a skin flap is still attached to its original site at one end and remains connected to a blood vessel. They also removed lymph nodes from his groin area, but decided to not touch the nodes in Jay’s stomach, for now.

Coakley described surgery day as “literally the longest day of my life”.

The surgeries were successful. They awaited the pathology results to see what was discovered in the removed lymph nodes. Three days after surgery, they learned that 20 cancer cells were discovered on one of the lymph nodes that had been removed from Jay.

“It could be worse, but it wasn’t what I wanted to hear,” said the mom.

She said Jay’s doctors are discussing his future course of treatment for the nodes in his stomach and whether they should remove them or leave them.

“Taking them out would mean more lymphedema to deal with,” she said.

Coakley said they are taking it one day at a time. Jay learned to use a walker to get around with, so that he is not confined to a wheelchair.

Coakley, who has been at her son’s side every step of the way, also said she is overwhelmed, tired and mentally drained. But at the same time, enjoying the good days with her son, when they have them.

“Before we had the major surgery, the doctor let us out of the hospital for three days and we did I-Drive [where they took in all the attractions] had a good day – full of laughter. We had a wonderful time,” she said.

As Jay’s medical challenges continue, Coakley said it’s a struggle to get him to eat as the medications interfere with his taste buds. She finds herself having to cook constantly to get him to try foods.

“He wants certain home-cooked meals, but the minute he smells or tastes it, he can’t stomach it.” She said Publix chicken and hotdog sandwiches were making the cut for him.

She said he is also uncomfortable sitting, walking and lying down.

“I am constantly purchasing things to get him comfortable.”

Jay resumed chemotherapy treatment yesterday.

His doctors are trying to work with the family, so that he can return home to The Bahamas for Christmas and get a break from treatment.

She describes the ordeal they’ve had for the past few months as “rough” on both her son and her.

“Mentally, I am tired and drained … he is not my happy boy that most know him to be and, although I know this is only for a season, it is tough as a mother to watch her only child go through such pain and torture. Our journey is far from over,” she said.

Coakley is also crowdfunding on GoFundMe to raise funds to assist with defraying the costs of bills associated with Jay’s care. The account has raised $20,306, to date, of a $100,000 goal and she is thankful for the financial assistance they have received thus far.

As an American citizen, Jay has also been able to receive some government assistance, and Coakley said she tries to tap into foundations that can assist. Through this avenue, she was able to get a $35,000 radiation bill covered, but Jay’s medical costs continue to increase, daily.

It was in April that Jay brought the lump on his upper-right thigh to Coakley’s attention. At the time, the growth was not painful, but Coakley took her son to the doctor. It was initially diagnosed as fatty tissue.

Coakley opted for a second opinion in Florida, thinking they would have the growth removed. They had just begun their summer vacation, when their world was upended. It took almost four weeks for Jay’s cancer to be determined because it is rare.

As he continues to fight, Jay’s one request of his mom has been for her to take him skydiving in celebration, when they beat his cancer.

Show More

Shavaughn Moss

Shavaughn Moss joined The Nassau Guardian as a sports reporter in 1989. She was later promoted to sports editor. Shavaughn covered every major athletic championship from the CARIFTA to Central American and Caribbean Championships through to World Championships and Olympics. Shavaughn was appointed as the Lifestyles Editor a few years later.

Related Articles

Back to top button