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When 9-year-old Amaiyah finished treatment for a brain tumor this year, her mom, Tequila felt like they’d finally stumbled over the finish line of a marathon they never wanted to run.
“I’m just surprised I’m not crazy by now,” she said with a laugh. “It’s amazing that we’re still a whole family, that our marriage is still intact, because everybody is neglected during treatment. For our family to still be sane and whole is a big deal.”
Amaiyah was diagnosed with a Pure Germinoma brain tumor at just 8 years old. Doctors originally told Tequila it wouldn’t be cancer – brain cancer is so rare in children. In fact, when the team narrowed in on what kind of tumor it was, they said they’d never seen this type in a child her age before. Thankfully, it’s a type that responds well to treatment – Tequila remembers doctors telling her, “If you had to pick one type of tumor to have, this would be the one you’d pick.”
Research update: Read about how donations to CCRF funded groundbreaking research for kids fighting brain tumors.
They placed a port in Amaiyah’s chest (a medical device that goes under the skin and allows doctors and nurses to give medications more easily) and began chemotherapy that day. In just a few weeks, Tequila watched her daughter go from outgoing and bubbly, to overtired, to a cancer patient. The whole experience gave them both serious emotional whiplash.
“That first week was the worst one of all the treatment,” Tequila said. “The port and chemotherapy didn’t really seem to bother her… she didn’t really flip out until her hair started falling out. We went to the clinic one day and she just started yanking it out in big clumps. Right after that visit, we just shaved it all off.”
When Amaiyah is feeling well, she’ll chat your ear off. She kept busy in the hospital with painting, drawing and building with blocks. She loves to dance and she’s a strong swimmer, and Tequila was proud to see cancer didn’t stop her from enjoying either one. She’s also a good student. Because of COVID-19, Amaiyah was able to keep up with school online, logging in even after a long day of chemotherapy or clinic visits.
Treatment was hard on Amaiyah’s three siblings, too. They know cancer is something you can die from, so they were afraid for their sister. At the same time, they sometimes felt resentment at the attention Amaiyah would get and the hardships her cancer put them all through. They’d see Amaiyah refusing to take the big pills she’d have to swallow and know that meant Tequila would have to take her to the hospital to make sure she’d get the medication she needed.
“It’s hard because they don’t totally understand or know how to deal with those emotions,” Tequila said. “They’d see me flustered with Amaiyah and think, ‘gosh, if you just took the pills and did what you were supposed to do, you wouldn’t have to take Mom away from us again,’ But this is just what cancer looks like sometimes – it runs the show.”
Advice: Read our blog post "5 Ways to Help a Sibling of a Cancer Patient Feel Important."
After Treatment – Now What?
In all, Amaiyah completed two months of chemotherapy and six weeks of radiation. Thankfully, her treatment was extremely effective against her tumor – follow-up scans showed only scar tissue, which has now completely disappeared. But the end of treatment has brought its own challenges. No more chemo and radiation means fear of recurrence. Trying to get back into a family routine feels jarring after months of instability. If cancer is the earthquake, Amaiyah and her family are now dealing with the aftershocks.
“When she stopped going to the clinic, that was really hard. You get used to those people and that routine,” Tequila said. “So when treatment was over and they’re all congratulating us and saying, ‘you don’t have to come back anymore,’ we’re like, what? Are you sure? Now what?”
Amaiyah and her siblings had to get used to sharing their mom again – a difficult adjustment to make when for months of treatment, it had just been Amaiyah and Tequila together in the hospital or in the clinic. Tequila has been heartened to see her kids getting along better in recent months – the girls love to choreograph dance routines and do their hair together. They’re also excited to add a new little sibling to the family in a few months... Tequila is pregnant, and they can’t wait to become a family of seven!
A New Chapter
Tequila is so proud of Amaiyah for making it through all the surgeries, MRIs, and scary moments cancer brought. She has a string of beads hanging in her car that symbolizes each appointment, procedure, and round of chemotherapy and radiation.
Today, Amaiyah is cancer-free and will continue her follow-up scans every three months for the next year. In the meantime, Tequila hopes her family can all keep catching their breath. She says the support she received meant everything to her on the hardest days – many friends and family members shaved their heads in solidarity with Amaiyah. Seeing all that support made Amaiyah feel a little less alone.
“I want people who don’t have a child with cancer to know how much that support means during treatment,” she said. “It gets you through the day and holds you up during that time, in addition to the faith that you have. I’m so grateful for that.”
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