When you’re diagnosed with cancer, people will give you gifts — often trinkets and blankets — that are most often completely impractical.
"You end up using none of it," 19-year-old Kyla Pokorny told InsideEdition.com Tuesday. "It’s very nice, but I found stuff that is a lot more helpful."
She should know. At age 14, she was diagnosed with bone cancer. It’s gone into remission and come back twice. More than five years later, it has spread to every bone in her body and she has been receiving her latest blasts of radiation since September.
To her, it is important to take care of others while taking care of herself. She spends at least three days a week in the hospital, and she usually passes much of her time with the babies and the children in the cancer ward.
So for Christmas, the Connecticut girl wanted to put together survival bags for young cancer sufferers – things that soothe the body and occupy the mind, things that she wished someone had given to her.
Things like a quick-acting thermometer. Scent-free lotion. A really good heating pad for chemo-ravaged muscles. Coloring books and colored pencils. Pretty, comfortable head scarves. Baby wipes that don't sting.
"If you’re a kid with cancer, if you have a temperature, you need to know right away," Pokorny said. "It’s super dangerous. You need to go to the ER."
Radiation can burn the skin. “Mine just got like peely, like a sunburn,” she said. “Some people have open wounds.” And the damaged skin can be in private places.
Thus the importance of scentless, non-stinging lotions and wipes.
All of this goes into her care packages. She estimates the bags cost between $100 and $200. The special lotions she includes are hard to find and cost as much as $40 a bottle. She has started a GoFundMe page to help finance her holiday project and she hopes to make at least 80 holiday parcels.
Some of her bags will cater to the cancer babies and very young children she tends. Others will be designed for kids closer to her age.
The younger recipients will get warm, comfortable blankets that can be washed several times without losing their shape or softness. The older ones will get intricate, adult coloring books and appointment books for keeping track of their myriad of medical appointments.
She most loves spending time with the youngest of the sick, and they bask in her presence.
“I feel like I have more little friends than big friends,” she said. “I’m really good with kids. They like me.”
She originally thought she would become a nurse when she grew up. Now she thinks she will become a child-life specialist, a professional who works with pint-sized, hospitalized cancer patients.
The hardest part about being a teenager with cancer, she says, is that her friends of similar ages are away at college, steadily studying their majors.
"I can’t make any plans,” she said. “I’m like stuck. Chemo messes with your brain. If I read a chapter (of a book), I wouldn’t remember it 20 minutes later.”
So she waits, and undergoes her radiation treatments as needed. Her hair is gone and will never come back in its original glory. She just got a new wig – dark brown and waist-length.
Her life goes on, in its often painful, but ever-changing way.
Pokorny rides it like a wave.
“I’m doing pretty good,” she says.