How one grieving mom and a promise is getting these smart shirts to kids with cancer who need them.
This new shirt can brighten the everyday reality for those dealing with childhood cancer.
She was finally in remission!
Amanda Hope, a 12-year-old girl who loved being athletic and adored tie-dye, had just been declared in remission. In March 2011, after three years of intense chemotherapy for leukemia, they finally thought they could celebrate. Her mom, Lorraine Tallman, describes the "No More Chemo" party they threw as the best day of her own life.
Tragically, the remission did not last. Just a few short months later, they learned the cancer was back and had invaded so much of her body that she wasn't a candidate for a bone marrow transplant even though her sister was a perfect match.
The last words she said to her mother: "Look at me, both eyes, two ears."
Before they knew that she was going to be ineligible for a bone marrow transplant, Amanda was plotting with her mother to create a new shirt called a ComfyCozy for kids with cancer so they wouldn't have to be embarrassed anymore.
When a child needs multiple infusions of medications daily, they have a port installed, usually in the chest area.
That means that throughout the day, as doctors and nurses check on their port or give medications through it, kids have to keep taking off their shirts. It's inconvenient, not to mention embarrassing, to have to go shirtless in a room where rows of chemotherapy patients receive treatment together.
The ComfyCozy shirt prevents that with its smart design of button or zipper panels along the top that allow access to the port without a patient having to take their shirt off.
Amanda had planned to start the organization and production with Lorraine after the transplant, but the cancer interfered.
"Her last words before she passed away, she held my hands and said 'Mommy, are you listening to me? I'm like, 'Yeah.' She goes ,'Look at me, both eyes, two ears. Promise me every child in the world is going to get a ComfyCozy, and they're going to get it for free.'"
Lorraine says that if Amanda could hear that every kid with cancer was going to get a ComfyCozy for free, she would be doing her trademark happy dance.
Amanda passed away on March 30, 2012.
Lorraine is seeing Amanda's mission through.
She knew the shirts had to be tie-dyed (Amanda's favorite). She knew they had to be functional and high quality. So she got to work.
Through donations from sports teams, individuals, and companies, Lorraine has been able to give away 5,000 shirts to childhood cancer patients, who she affectionately dubs "childhood cancer warriors." So far, much of her work has been focused in Arizona, but she has a new sports team stepping up to fund a donation program to cover the state of Ohio.
In addition to ComfyCozies, she also uses donations to help support families with gift cards for gas and groceries during chemotherapy treatment. She acutely remembers what it was like to spend three weeks in the hospital by her daughter's side for chemo only to get home and find her utilities shut off.
She aims to up the number of teams and individuals donating until she can make Amanda's dream come true — a ComfyCozy on the brave little shoulders of every child with cancer in the world.
And then she will think of Amanda doing her happy dance.