Pushing Through Pediatric Cancer
When insurance coverage for Carly’s medication was denied, Diplomat helped support the appeal process.
“Every single person has been compassionate, caring, and kind.”
— Miki, Carly’s Mom
Like many 7-year-olds, Carly was playful; she enjoyed creating art and didn’t have a care in the world. She was learning to dance on pointe and beginning to excel. But her life was about to take an unexpected turn.
It all began the day before Thanksgiving, when Carly received some difficult news: There was a tumor in her sinus cavity.
Her mother, Miki, recalled her reaction.
“I remember that I just felt like I couldn’t breathe. I started screaming. … I think I was in shock.”
It was the confirmation of Miki’s worst fears. Carly had come down with a cold that wouldn’t go away. Her family had been worried, but no one thought it could possibly be cancer. Together, they faced the news and started down the long road of cancer treatment, with tests, long hospital stays and constant worry along the way.
But Carly stayed brave. She faced all her exams and operations with resilience and grace, even when they left her weak. At such a young age, the chemo was especially tough on her body.
“She went from about 75 pounds to 58 pounds. … She was skin and bones.”
Despite all the chemo, the tumor was still growing. An MRI showed it had grown 40 percent since the beginning of her treatment, meaning major surgery would be necessary.
Once again, with the support of her family, Carly stayed strong. She impressed even her experienced surgeons, who said she was “tough as a $2 steak.”
Carly used that grit over the years — through six relapses, three in her brain and three in her lungs. Her surgeries would be successful for a time, but the cancer kept returning.
Despite her determination, the long treatments and relapses started to take a toll on Carly and her family. Options seemed scarce. Treatments didn’t seem to work. Her doctors ran more and more specialized tests.
Finally, Carly was more accurately diagnosed with mesenchymal chondrosarcoma, a rare cancer of the bone or soft tissue. This opened her up to more cutting-edge treatments and clinical trials specifically for people with her condition.
The treatment they had hoped for came through targeted radiation therapy and a proper dose of a promising new medication. It was the only thing able to keep Carly’s cancer at bay.
“Without the medicine, we wouldn’t be where we are today.”
Carly began taking a specialty drug that required specific insurance protocols and strict adherence. Because she was connected with Diplomat, all insurance appeals were completed on her behalf. With all this support, Miki and her family were able to keep their focus on Carly, instead of worrying when her next treatment would arrive.
“When the people call me to refill her prescription … they do it like clockwork. I never have to call.”
But she was even more impressed with the level of care and concern of the patient care coordinators who call: “They’ve all been very caring.”
One day, after they had just gotten home from a doctor’s appointment, Diplomat called. Miki remembered sharing the news that there was no change: Carly was stable.
“They were excited — I loved that. They really care, so that’s been something I’ve been very surprised at. I think [Diplomat’s] got a great customer service base. In a situation like this, it’s very, very nice to have.”
Diplomat is only a part of their larger support system. Carly and her family leaned on their faith to get through the worst, and they focused on telling her story in hopes that others in similar situations would find comfort.
“We feel like we were lucky enough to have something that can help others. That’s kind of how we choose to look at it. If Carly’s story is going to touch somebody, do something positive for somebody, then it has some good.
“The strongest person is Carly. I’ve never seen anybody face the adversity that she’s faced, and she can still smile and light up a room. She’s just as happy as the day before she had cancer. She’s just Carly.”