Pregnancy comes with aches and pains, so when Nakila Hall-Ellis started having knee pain, she just thought it was the baby sitting on a nerve. But her knee didn’t feel better after the baby was born. An MRI revealed a tumor in her knee – the result of leiomyosarcoma, a rare type of cancer that affects smooth muscle tissue and develops tumors anywhere in the body. Nakila thought her 2014 surgery to remove the benign tumor in her knee was the end of the story. But four years later she experienced numbness and pain in her toes. This time the doctors found a tumor on her tailbone, and it was affecting the nerves down her leg. The diagnosis? Myosarcoma – a malignant muscle tumor.
The next months were grueling for Nakila — chemotherapy, radiation, 24hr infusions, sometimes for 4 days at a time — all while working as a nurse and raising 3 children. But none of it was helping. Finally, genetic testing suggested that Nakila might respond to clinical trials better. The challenge was that the trials were at the MD Anderson Cancer Center in Houston, Texas. Nakila started making the weekly drive – 8 hours each way. She took her husband and kids with her the first couple of visits, but that wasn’t sustainable. As Nakila grew weaker from the treatments, her mom would stay home with the children so that Nakila could travel to Houston with her husband by her side.
Soon, driving to Houston became untenable for the family altogether. With the help of resources from her mother-in-law, Nakila started flying to Texas. But while one burden was lifted off the family, they faced another stress: the financial burden of the air travel and other expenses were overwhelming.
For six weeks, Nakila’s family juggled paying for her weekly flights to her clinical trial. Her husband tried to work as much overtime as he could, but it wasn’t enough. He was having to take unpaid time off to be with Nakila at her treatments, while Nakila’s mom was taking time off work to care for the kids. Nakila thought many times to herself, “We just can’t afford this. I was trying to figure what else could we do besides this clinical trial and all the travel.”
Then her social worker asked her a question that would change everything, “Have you heard of Lazarex?”
It’s been 6 months now that Nakila has been receiving help from Lazarex in the form of reimbursements for all her travel expenses (airfare, hotel, rental car for her and a companion). Once on the verge of dropping out of the clinical trial, Nakila credits Lazarex for making it possible for her to continue her treatments. “If we didn’t have them – I don’t know how we would do it,” she says.
Nakila still travels for her treatments, though not as frequently. She’s still working as a nurse, but she’s had to cut back her hours because of fatigue. She says it can be a struggle, “some days I’m not able to keep up.”
The good news is, the clinical trial is working, her cancer is stable, and the tumor has not grown. “I’m so thankful for Lazarex, it’s helping keep me alive.”
