Late in January of 2018, Maleia’s parents Kristy and Malcolm noticed that her smile was occasionally lopsided, particularly in pictures. It wasn’t a consistent thing, so they assumed she was going through a phase of trying to smile in pictures. A few weeks later, they also noticed that Maleia was slowly forgetting to use her dominant right hand. As time went on, she started dropping things she held in that same right hand. A chance meeting with a new neighbor who happened to be a nurse told Kristy and Malcolm that the behaviors could be connected, and that they should take Maleia to the doctor to get checked out.
They scheduled a visit with Maleia’s pediatrician, who immediately referred them to a neurologist. By this point, the family was gravely concerned and decided to take Maleia to the ER at Sacred Heart in Pensacola, Florida. The doctor there did a routine exam and proceeded to order a CT scan. A tumor was identified right away, and Maliea was moved to the PICU unit at the hospital.
On March 21, 2018, Maleia had surgery to remove part of the tumor. The pathology showed an aggressive, high grade glioma. The family decided to move Maleia to Boston Children’s Hospital, where she had her second surgery to remove more of the tumor and get fresh tissue for molecular pathology. A second surgery followed to insert a permanent shunt that would drain her severe case of hydrocephalus, which is fluid buildup in the brain.
In May of 2018, after recovering from the surgeries, Maleia began her 33 radiation treatments in Boston. During her time at BCH, doctors learned that her tumor was not as aggressive as originally thought. They also discovered the exact genetic mutation in the tumor and that unfortunately, they could not give her precision therapy.
Maleia finished her radiation treatments in July of 2018, and the family returned to Florida. Knowing that her tumor wouldn’t respond to chemotherapy, the family instead flie back to Boston every 12 weeks for follow-up MRI scans to monitor it. “Thankfully, we have watched it shrink and fall apart with every scan!” shared Kristy. “We pray that it will continue to do so until it no longer remains.”
Today, Maleia and her family are in good spirits “We have all fared as well as can be expected, and have grown so much as a family!” they said. “Our faith has been made deeper, in ways we would not have experienced otherwise. Our community has surrounded us in love, support, assistance, and prayers.”
Every child who has been diagnosed with childhood cancer inspires us to Rally On to find better treatments with fewer long-term side effects and, ultimately, cures. Please join us in the fight against childhood cancer by making a donation or setting up your own Rally fundraiser today.
