With rising medical costs and cuts to insurance, children with cancer don’t always get the medication and help they need.
That’s why Mallory Chila, 17, a senior at Weston High School, created Mallory’s Children’s Cancer Foundation, a non-profit foundation to help children pay uncovered medical care costs.
Mallory had a special interest in starting the foundation, because she is in remission from stage 3 diffuse large B-cell non-Hodgkins lymphoma, a type of cancer that affects lymph organs.
While Mallory was in the hospital receiving chemotherapy treatment, she developed a side effect called mucositis, which causes painful mouth sores and inflammation of the mouth.
To treat the mucositis, she got a prescription for a special mouth rinse to ease the pain and prevent recurrence. The rinse is expensive and costs $1,000 for one box but it helped keep her mouth extra clean and kept the mucositis from coming back.
The cost of the mouth rinse was covered by Mallory’s family insurance. But not everyone is so lucky. Those who can’t afford the rinse go without it.
“When I was in the hospital, I got to know other kids with cancer. They suffered in pain from mucositis because their insurance wouldn’t pay for the rinse, or the family couldn’t afford it,” Mallory said.
She set up Mallory’s Children’s Cancer Foundation in April and it recently received its 501(c)(3) non-profit tax exempt designation, so now she is ready to start fund raising.
“One of the projects I am working on is hosting a fund-raising concert at the Webster Arena in Bridgeport. We’re looking for a headline act,” she said.
Mallory’s foundation will help kids with cancer get things they need but can’t afford. “The good thing about my foundation is all the funds go directly to the kids. Other groups collect money for research, but all the money I collect will go to the kids who need it,” she said.
Mallory discovered she had cancer last year while on vacation with her family in Georgia.
She had been feeling sick for months with pains in her chest and back, and a persistent cough. While on vacation, she was taken to a local emergency room when her neck swelled to double its size. She was told she had mononucleosis, a glandular fever that causes fatigue.
But she kept feeling sick and when she returned home she couldn’t breathe or lie down.
She went to Norwalk Hospital where tests showed she had a six-inch tumor pressing on her windpipe, a collapsed lung, and fluid in her chest and around her heart and lungs. She was diagnosed with stage 3 diffuse large B-cell non-Hodgkins lymphoma, meaning cancer was found in lymph nodes on both sides of her diaphragm.
For eight months she received chemotherapy treatment for her cancer at Yale New Haven Children’s Hospital. She initially spent three weeks in the hospital, and over the course of the next several months, she rotated her schedule, spending eight to 12 days in, then eight days at home with frequent emergency room visits between hospital stays because of medication side effects.
During that time she had to undergo many procedures and because of the location of her tumor, had to have a lot of tests performed without anesthesia including spinal taps where a huge needle was put into her back for chemotherapy injections. She also had biopsies and bone marrow tests and a PICC line from her arm to her heart for intravenous access. “The bone marrow test was the most painful,” she said.
Her grandfather, John Chila, with whom she is very close, visited her every day when she was in the hospital.
While at the hospital, Mallory saw that other kids with cancer were having a tough time because their insurance didn’t cover everything they needed. In addition to not being able to buy the mouth rinse to prevent mucositis, others had worse problems.
She said one boy with brain cancer had to stay at the hospital until he died because his insurance wouldn’t allow him to get care at home.
Although Mallory was hospitalized on and off for eight months while receiving cancer treatment, she managed to keep up with her schoolwork and graduated on time with her class on June 19.
Her cancer is in remission and she is planning for the future. After high school graduation, she plans on attending the College of the Holy Cross in Massachusetts and studying psychology and neurobiology, hoping one day to become a psychiatrist.
But helping children deal with cancer is on her mind, too. Last month, Mallory was the keynote speaker at Weston’s Relay for Life, a fund-raising event for the American Cancer Society, where Weston High School Principal Lisa Wolak called her “a remarkable young lady and an inspiration.”
To make a donation to Mallory’s Children’s Cancer Foundation, send checks payable to MCCF, 3 Christopher Hill Road, Weston, CT 06883. For more information, email [email protected]