When your child is diagnosed with cancer, you want to do whatever is necessary to get rid of the cancer. According to one parent, Lisa, you don’t expect it to turn into a never-ending search for a cure.
Lisa’s daughter, Madelyn, was diagnosed with neuroblastoma just before her second birthday. During the next year, she would have eight rounds of chemotherapy, surgery to remove one tumor, and two rounds of immunotherapy in preparation for two separate stem-cell transplant surgeries, followed by radiation. Doctors are also keeping a watchful eye on a second tumor, which is inoperable because it is surrounded by blood vessels.
In January 2018, after the stem cell transplants, Madelyn developed Transplant-Associated Thrombotic Micro-Angioplasty (TA-TMA). This is believed to have been caused by the pre-transplant chemo, according to Lisa.
“It is pretty rare, but now we have to be extra careful to watch for kidney issues, because it has injured her kidney. Since the TA-TMA, she has gone through kidney failure and dialysis, and is still recovering from all that,” Lisa explained.
Madelyn spent much of the next nine months in the pediatric intensive care unit and Lisa felt like she was living at the hospital.
“I was there with Madelyn 24/7, but Mike, her dad, had to go to work, so he was driving back and forth as much as possible during the week and staying at the hospital every other weekend,” Lisa recalled. “We got to go home for almost a month at one point, but then she developed fluid around her lungs and heart, and back we went.”
Because of her kidney issues, Madelyn, now age 4, has become sensitive to many different types of treatment, so doctors are just beginning a low-dose chemotherapy treatment that targets the bad cells and not the good. Lisa and Mike know there are no guarantees it will work, but there is always hope.
Throughout this journey, Compass to Care has been by the family’s side, covering travel expenses so Mike and Lisa could get Madelyn the care she needs and be with her as much as possible.
“When we applied for assistance, I was so worried we wouldn’t be accepted because my husband was still working, even though I wasn’t. But our prayers were answered, and we are so happy and grateful,” Lisa recalled.
“We would like to give our gratitude to everyone involved with Compass to Care. Your help with gas and parking has been a tremendous stress reliever. I no longer had to leave two hours early to find free parking five blocks away from the hospital,” shared Lisa.
There Has to Be More
Lisa felt there had to be something else that could be done.
“We did all the doctors recommended for the first year, but it wasn’t working. I just felt like Madelyn wouldn’t be able to survive if they did anymore chemo. I felt like I had to do something more. I started doing my own research to try and find answers and to try and save my daughter,” Lisa explained.
Her research has taught her to not be afraid to ask specific questions, and to make sure doctors are watching Madelyn’s kidney functions even more closely. She has searched for answers and gathered opinions from doctors all across the country.
“There are so many factors in Madelyn’s case that are unique, that the more I research, the more I find. It’s never-ending, and it’s not all good,” Lisa said. But it has helped her be more involved in Madelyn’s treatment plan.