PLATTSBURGH — Six-year-old Alec Coughlin was diagnosed with stage 4 Wilms tumor, a kind of kidney cancer, on April 5.
His mother, Karla Lyon, had noticed a swelling on the left side of his abdomen March 31.
A pediatrician tested him for mononucleosis because it was thought an enlarged spleen was the problem.
After a few days waiting for those test results, Lyon took her son to the CVPH Medical Center emergency room, where she demanded there be a computed tomography scan of Alec’s abdomen. At first, she was told the radiation from the scan would be too detrimental for him because of his small size, but a pediatrician later approved the procedure.
Karla waited in the ER for hours for the results.
Just before midnight, a doctor came to the ER from his home to deliver the bad news — a tumor and an enlarged kidney with all symptoms pointing to Wilms tumor.
HARDER TO TREAT
The following day, Alec underwent a six-hour surgical procedure at Fletcher Allen Health Care in Burlington to remove his left kidney and the football-sized tumor.
This has been followed by a series of chemo treatments, lung radiation therapy and countless lab tests.
The frequent medical appointments require Karla to drive Alec to Burlington at least once a week.
The cancer Alec has is rare. Only 500 cases are diagnosed yearly in the United States, according to the American Cancer Society.
And tests found that because of Alec’s genetic makeup, the cancer was going to be harder to treat and more likely to reoccur following remission.
But from his contagious smile and delightful personality, one would never know how much he has been forced to endure because of his illness.
“Not a day goes by that he doesn’t have a smile on his face,” Karla said.
She is always busy — she also has two other children, Kyler Lyon, 10, and Kolbi Lyon,16.
Alec’s treatment forced Karla to miss all of Kyler’s Little League games this season, as well as Kolbi’s school softball games.
But she has a strong support system that has helped to ease her difficult situation.
“I have my family,” she said. “I can’t even describe the amount of support. We’ve really come together.”
Karla’s sisters, Keri Denchick and Kim Recore, both of Peru, have been helping her care for Kyler and Kolbi when she has to be away for Alec’s medical appointments and treatments. Her ex-husband, Mark Lyon of Canton often travels to lend a hand, she said.
The treatments that meant to help Alec regain his health have further damaged his body.
“It caught up with him,” Karla said.
Potent chemotherapy drugs caused liver damage, leading to hepatic veno-occlusive disease, she said. The disease blocks small veins in the liver.
The radiation therapy has also damaged Alec’s lungs. Preliminary results from a recent bronchoscopy show damage to the upper lobes caused not only by radiation exposure but also aspiration, or presence of foreign substances, in his right lung.
Matters were made worse when Karla lost her job in April. She has received no public financial assistance, which has made things difficult financially, she said.
And as a single mom, she has had to bear the brunt of medical bills not covered by Alec’s father’s insurance.
“It feels like the walls are starting to close in,” she said, as the bills continue to pile up.
Momot Elementary School donated the proceeds from its annual Cupcakes for a Cure fundraiser in May to Alec and his family. Classes that met their fundraising goals were rewarded with a cupcake party at the end of the collection week, Karla said.
And family friend Bev Chisholm of Plattsburgh held a two-day yard sale at her home in early August to benefit the family. All the money raised went to help with monthly bills.
Another event for “Team Alec” was put on earlier this year by Villari’s Self Defense Center of Plattsburgh, where Alec used to be a student. Those funds helped pay for out-of-pocket medical expenses and insurance co-pays. The rest went into a savings account for future medical expenses.
While the funds from these events helped greatly, Lyon said she doesn’t want to have other fundraisers because its too stressful for her family in the midst of Alec’s continuing treatment.
So much has changed in Lyon’s daily life and that of her family since her son’s treatment began.
“He hasn’t left my sight since this all started,” she said.
Even elements of their daily life have been altered.
Since his diagnosis, Alec has lost 20 pounds and now weighs a mere 40 pounds. Feeding tubes and formula haven’t helped him maintain a healthy weight, Lyon said. So when she prepares his meals, she has to add fats to increase his calorie intake.
Alec describes his experience with cancer as “painful.” But not just physically.
Due to health risks, he hasn’t been able to attend school since March and could not return with his classmates this fall.
“If he ever gets a cold, it can be deadly for him,” his mom said.
A tutor will teach him at home instead.
“He’s a social butterfly, and he loves school,” Karla said. But “there’s a lot of things he wants to do but is not allowed to do.”
While the family’s life has been turned upside down since Alec’s diagosis, it helps to maintain a good outlook, his mother said.
“The whole experience has been very humbling for me as a person,” she said. “Despite the obstacles along the way, he is one of the happiest little kids I know.”HOW TO HELP To give a donation to help Alec Coughlin and his family, go to paypal.com, click on "Transfer money," and then "Send money to someone." Choose the "send gift" option, otherwise PayPal will charge a fee. Enter email@example.com in the line for the email address where your donation will go. Donors need not have a PayPal account to contribute. Team Alec T-shirts and bracelets are for sale on the Team Alec Facebook page, which can be found at http://tinyurl.com/97hyf26.