14-year-old Winston “Jay” Coakley was upset when his mother, Tammy Coakley, said, “I miss being normal.”
Jay is battling desmoplastic small round cell tumor (DSRCT). This is a rare, aggressive, mutated cancer that is usually found in the stomach, but it appears on his right upper thigh and is even rarer. But when he learned he would have lymphedema for the rest of his life, he lay in bed and cried.
Lymphoedema is swelling in different areas of the body that occurs when something affects the lymphatic system. When the lymphatic system does not work well, the body retains water and causes swelling. Swelling usually affects the arms and legs, but can affect other areas of the body as well.
Symptoms of lymphedema are mild and may cause mild swelling and discomfort. However, lymphedema can cause significant swelling that is painful and can lead to skin problems such as infections and scarring. There is a law
Lymphedema can be a serious medical condition. People with lymphedema are at risk of developing infections that start on the skin. These infections can be life-threatening. Lymphedema can also lead to lymphangiosarcoma, a very rare skin cancer. Several things can cause lymphedema, including breast surgery, pelvic surgery, radiation therapy, trauma, infections, obesity, lack of exercise, tumors, heart conditions, blood vessel problems, and kidney disease.
Jay’s doctor also recommended completely changing the teen’s diet and not allowing him to eat starches to reduce leg swelling, which can lead to other complications.
“It’s not normal for him to be able to eat anything,” Corkley said.
Her son not only wants a normal life, but also talks about missing school and friends, spending time with his father and cats. and even expressed that they missed spending time together, despite being “nervous with each other.”
“He misses everything in his life. He misses walking properly this summer and not going to the beach,” Corkley said.
She and Jay are hospitalized at Arnold Palmer Children’s Hospital and have been undergoing treatments for the past five months to shrink the tumor so doctors can safely remove it. Before that could be done, a tumor that had been attached to a blood vessel had erupted and appeared on the outside of Jay’s thigh. scaled down.
In the early hours of Saturday, September 17, Jay had to be rushed to the emergency room with a high fever and uncontrollable pains. He was determined to have a “moribund” tumor infected. Jay’s doctors decided that surgery was necessary.
On September 20th, doctors removed the infected part of the tumor. Jay comes out with the tumor still on his leg, but with a hole in it.
The day Coakley had been waiting for since they arrived in Florida came on September 29th.
“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 make sure it was all removed.
“The results came in and the tumor was all there and 80% dead.”
On October 4th, Jay returned to the plastic surgeon for a flap operation. A flap is healthy skin and tissue that is partially removed and moved over a nearby wound. In many cases, the flap is still attached at one end to the original site and connected to a blood vessel. They also removed the lymph nodes from his groin, but decided not to touch Jay’s stomach lymph nodes for now.
Corkley described the day of surgery as “literally the longest day of my life.”
The operation was successful. They waited for pathology results to see what was found in the removed lymph nodes. Three days after his surgery, they learned that 20 cancer cells were found in one of the lymph nodes removed from Jay.
“It could have been worse, but it wasn’t what I wanted to hear,” said the mother.
She said Jay’s doctors are discussing his future course of treatment for his stomach nodules and whether they should be removed or left.
“Removing them means dealing with more lymphedema,” she said.
Coakley said he takes one day at a time. Jay has learned to use a walker to avoid being wheelchair bound.
Corkley, who has been by his son’s side every step of the way, also said he felt overwhelmed, tired and mentally drained.
“Before having major surgery, the doctor let us out for three days and we did an I-Drive. [where they took in all the attractions] Had a nice day – full of laughter. We had a great time,” she said.
As Jay’s medical challenges continue, Corkley said it was difficult to get him to eat because the drugs interfered with his taste buds. I realized I had to.
“He craves a particular home-cooked meal, but the moment he smells it or tastes it, he can’t stand it.” said.
She also said sitting, walking, and lying were uncomfortable.
“I always buy things to make him comfortable.”
Jay resumed chemo treatment yesterday.
His doctor is trying to work with his family so he can return to the Bahamas for Christmas and rest from treatment.
She explains that the ordeal they have been through over the past few months has been “rough” for both her son and her.
“Mentally, I’m tired and exhausted… He’s not my happy boy. I know this is only for one season, but as a mother, I know that an only child can endure such pain and torture.” It’s painful to watch you go through..our journey is not over yet,” she said.
Coakley is also crowdfunding on GoFundMe to raise money to help cover bills related to Jay’s treatment. This account has raised her $20,306 so far out of her $100,000 of her goal and she is grateful for the financial support she has received so far.
As an American citizen, Jay also has access to government assistance, and Coakley is trying to tap into foundations that can help. Medical costs are increasing day by day.
It was in April that Jay brought a lump on his right upper thigh to Coakley’s attention. Growing up wasn’t painful at the time, but Mr. Coakley took his son to the doctor. He was initially diagnosed with adipose tissue.
Coakley considered getting a second opinion in Florida and having the growth removed. They had just started their summer vacation when their world turned upside down. It took nearly four weeks for Jay’s cancer to be determined to be a rare cancer.
As he continues to fight, one of his mother’s requests was to take him skydiving to celebrate when he beat cancer.
https://thenassauguardian.com/a-teens-wish-normalcy/ Teenage Wishes: Normalcy – The Nassau Guardian