Summer Davis is already thinking ahead to December, when her 9-year-old daughter, Mikyla, is due for another brain scan. Mikyla has had nearly half a dozen MRIs since becoming cancer-free in July of last year. But Summer knows there is a 50 to 60 percent chance that the cancer could return — and the anxiety keeps her awake for days.
“I call it ‘scan-xiety,’” Summer said. “(Mikyla) doesn’t grasp that it could come back.”
Mikyla Ross had just completed first grade at Vichy Elementary School in 2010 when she began waking up each morning with persistent headaches and vomiting.
Mikyla’s pediatrician ordered an MRI, which revealed a brain tumor growing in her cerebellum. She was diagnosed with medulloblastoma, a malignant growth located in the part of the brain that controls balance, coordination and other complex motor functions. Mikyla’s cancer had also spread to her spine.
She underwent surgery the next morning at the Children’s Hospital and Research Center in Oakland, where a surgeon was able to remove most of the tumor.
Following surgery, Mikyla spent one month recovering in the hospital’s Intensive Care Unit. She then underwent several months of cancer treatments — which included high doses of chemotherapy, whole brain radiation, and stem cell rescues. Mikyla’s own stem cells were used for the stem cell rescues, which helped replace the healthy blood cells that were destroyed by cancer drugs and radiation therapy.
For the first six to seven months of treatment, Mikyla rarely left the hospital — and her mother was there every step of the way.
“When your kid is there, you’re the patient, too,” Summer said.
She said the cause of Mikyla’s cancer is unknown.
“There’s no rhyme or reason. It is what it is,” Summer said. “That’s what makes it so frustrating. I just think, ‘Why? Why my kid? Why my child?’”
Brain tumors are the second-most common childhood cancer — behind leukemia — and medulloblastoma is the most common malignant brain tumor found in children, said Dr. Nalin Gupta, chief of Pediatric Neurological Surgery at UCSF Benioff Children’s Hospital.
Medulloblastoma can happen in adults, but the vast majority of cases occur in children, Gupta said.
Three main factors that have an impact on prognosis are the age of the child, whether or not the tumor has spread, and how much of the tumor is removed during surgery, Gupta said.
Children who are older than 3, whose cancer has not spread, and whose entire tumor is removed have a 70 to 80 percent cure rate, Gupta said.
Most of the time, medulloblastomas can be completely removed, or at least mostly removed. The tumor is usually attached to the brain stem, which can make surgery difficult.
Surgery followed by chemotherapy and radiation increases the chances of survival. The downside of radiation to the brain is that it can affect cognitive development, hearing, and memory, Gupta said.
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The exact cause of medulloblastoma is unknown. In rare cases, inherited syndromes can increase the risk of developing the cancer, Gupta said. Like most cancers, brain tumors can be triggered by genetic mutations. Researchers are still studying the exact role these mutations play in cancer development.
As more is understood about cancer, Gupta said more effective drugs and therapies with fewer adverse side effects can be created — perhaps within the next 10 to 15 years.
Getting back to normal
Mikyla is now a year and a half out of treatment and is, thus far, cancer-free. She wants to be an artist when she grows up.
She returned to Vichy to finish the second half of third grade in January. Mikyla is now a fourth grader at the elementary school.
Most of her time is spent in a wheelchair, which one of her best friends — Madison — is always happy to push. Mikyla also can use a walker or walk with someone holding her hand. Her classroom aide, Flora, stays with her throughout the school day.
Doctors say Mikyla one day will be able to walk independently — but it’ll take time and patience.
“She’s a lot of work now, but she’s worth it,” Summer said.
Mikyla has all the typical side effects of brain radiation therapy. She has developmental delays, short-term memory loss, and wears hearing aides in both ears to help with her loss of hearing.
Mikyla no longer laughs at things as quickly, and she’ll sometimes say things that don’t make sense. Her favorite TV shows are the ones aimed at younger children, Summer said.
In other ways, she’s still typical for her age. Mikyla loves to create art and play Connect Four. She enjoys playing with the dogs at Madison’s house, and she’s an avid fan of Justin Bieber.
“We just appreciate every moment and every holiday,” Summer said. “We’ve learned to appreciate just sitting on the couch and watching TV.”
Summer believes the power of the mind is “incredible” — she’s seen Mikyla’s energy and outlook improve just by being home, seeing friends, and going to school. Summer doesn’t want to disrupt that progress.
“I don’t want to show I’m scared in front of Mikyla,” she said.
While Mikyla focuses on getting back to normal, Summer takes life three months at a time — the break between each brain scan. If the cancer does not reappear by July of next year, Summer said the chance of a relapse “goes down significantly,” and the MRIs will become less frequent.
“The big worry at this point is a relapse, but there’s nothing you can do about that,” Summer said. “You walk around with this cloud over you, knowing everything can change in a second. But you still have to live.”