Until early this year, Amaiyah had always led a very active life. She enjoyed hanging out with her three sisters, drawing, and praise-dancing at church. But in February she stopped acting like a typical seven-year-old. She slept more than normal, had little appetite, and got tired very quickly. Her mother took her to their pediatrician, who drew blood and diagnosed Amaiyah with mononucleosis. The doctor recommended that they schedule a follow-up visit in a month if she wasn’t feeling better. But Amaiyah continued to slow down and her symptoms only got worse. So in March, her parents took her straight to the emergency room.
When they arrived, Amaiyah’s blood sugar was at a level considered very dangerous, and she began going through an adrenal crisis. These symptoms indicated problems with the endocrine system, which is controlled by the pituitary gland. She was admitted to the hospital to stabilize her condition while doctors performed further testing.
The next day, the world began to shut down as COVID-19 took hold.
Imagine dealing with a sick child in the midst of a once-in-a-lifetime pandemic, with quarantines and social distancing. While Amaiyah’s family searched for answers, they worried that Amaiyah would be exposed to COVID-19 at the hospital and doctors’ offices they were visiting. They wondered how to keep her three sisters safe, as well.
After a week in the hospital, Amaiyah’s family got devastating news.
“The doctor finally came back and said she had a tumor pressing on her optic nerve,” said Amaiyah’s mother, Tequila. “The doctors informed us that she would need surgery in the near future, and they sent us home with medication to replace the function of the pituitary gland.”
Amaiyah’s surgery to remove the tumor took place on June 18. The tumor was wrapped around her pituitary gland, which regulates many of the body’s functions including blood sugar levels. A slice of the tumor was sent off to determine the type of cancer, and soon her family learned that she was fighting a malignant pure germinoma, a type of brain tumor that responds well to chemotherapy and radiation. After recovering from the surgery, Amaiyah had her port placed and began chemotherapy to shrink what remained of the tumor before moving on to radiation therapy.
“After her first chemo treatment, she did better than I expected,” said Tequila. “She was even able to eat afterward. But the chemo treatments have gotten progressively worse for her and recovery time takes longer.”
Knowing that the chemo would result in Amaiyah losing her hair, her mother, father, aunt, and even her grandmother shaved their heads in support. While the chemotherapy wasn’t easy, she knocked it out with only a few side effects. When she was with younger patients in the clinic, Amaiyah would even offer advice – telling them to remain still while receiving their treatment so the process would go faster.
Amaiyah’s next phase of treatment involved daily radiation at the Emory Proton Therapy Center in Atlanta. Proton therapy differs from standard radiation by delivering a beam of radiation that stops at the tumor instead of spreading beyond it like traditional radiation therapy, thereby reducing damage to healthy tissue. On the way to her appointments, she got a surprise when she saw herself on a CURE billboard.
“The first time we saw her face on the billboard, she almost missed it,” said Tequila. “We had to pull over and wait for the billboard to show her again. She was so excited to see herself up there!”
The proton therapy was a welcome relief from chemo and has been much easier to handle. Her energy level has been good, and Amaiyah’s family hopes to hear the words “No Evidence of Disease” very soon. Amaiyah is looking forward to being finished with treatment just in time to celebrate Christmas with her family. Being healthy again will be the best gift of all.
CURE is dedicated to conquering childhood cancer through funding targeted research while supporting patients and their families. Your gift of any amount will fund research that will allow kids like Amaiyah to live out her dreams.
