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Atypical Teratoid/Rhabdoid Tumor (AT/RT)
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Adaly Felipe is too young to fully understand that she may have possible hearing loss from chemotherapy or even why she receives treatment for cancer, but what this sweet and feisty 2 year old does know for sure is that she is surrounded by a lot of love from her parents and older sister. After being diagnosed with atypical teratoid rhabdoid tumor (AT/RT), a fast-growing tumor of the central nervous system, Adaly’s family refused to let the disease define their little girl.
“We were told the tumor could not be removed,” said Nancy, Adaly’s mom. “The doctors wanted to put Adaly on hospice during proton therapy.” Nancy sensed it just wasn’t the time and mother’s intuition proved she was right – Adaly is now on maintenance chemo after having completed proton therapy and three clinical trials which helped to very slowly shrink her tumor.
Nancy admits it hasn’t been easy though. “When Adaly first started getting sick, she wanted to be carried all the time,” which was a setback since she was progressing on learning how to walk. “She also went from being a good eater to having trouble tolerating even two ounces of formula and spiting up often,” said Nancy who knew something was wrong. “That’s when the doctor did a CT scan and found a tumor in her cerebellum.”
Currently, Adaly receives her nutrition from a feeding tube because she has lost the ability to eat or suck a bottle. She also has a port so that she can receive daily chemo from home but continues to make the 45-minute drive to Atlanta for infusions every few weeks. “Making the trip for infusions has been harder since the pandemic began,” said Nancy. “Now only one parent can go with Adaly and we are very grateful to ALSF for supporting us with gas and groceries which has been a big help.”
The Felipe family is doing their best to fight Adaly’s cancer during an unprecedented time and are happy they can continue to do her favorite activities like playing outside with her dogs. “This disease has had an impact on Adaly’s coordination,” said Nancy. “But she won’t let that stop her.” You can view all updates about Adaly on her Facebook group.
Sadly, Adaly passed away on August 6, 2020.
Information provided by Nancy, Adaly’s mom
Updated December 2020
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