Meet Myla

In June of 2020, Myla's mom, Katie, noticed a large lump on her daughter's neck. The next morning, Myla's neck was so swollen that she could hardly talk. A trip to urgent care and emergency blood work led Myla and her parents to Nationwide Children's Hospital, where they learned that Myla had Pre-B Cell Acute Lymphoblastic Leukemia. During her initial 10-day hospital stay, Myla underwent emergency blood transfusions, bone marrow biopsies, spinal taps, and a surgery to place a port through which she would receive chemotherapy.

While still undergoing chemotherapy, Myla constantly had a fever and headaches, and she was experiencing pain in her hands and legs. Myla's condition continued deteriorating to the point where was using a walker, could not move her hands, and was struggling to talk.

To find answers, Myla underwent genetic testing. Doctors identified that she had Charcot Marie Tooth (CMT), a hereditary condition that causes nerve damage. Normally, CMT is not discovered until a patient is in their 50s or 60s, but doctors suspected that the chemotherapy Myla was undergoing caused the disease to manifest earlier. Both of Myla's parents tested negative for CMT, meaning that she was in the 2% of cases that are not passed down genetically.

Once diagnosed with CMT, Myla's doctors needed to eliminate one important medicine from her chemotherapy plan, which meant that they needed to think about adding a new medication to her treatment course. Fortunately, Myla was participating in a research study, and through the study she was able to receive immunotherapy, a type of treatment that uses the body's immune system to kill cancer cells. The immunotherapy was given continuously through a PICC line in her arm for 4 weeks, requiring her to carry it in a backpack. The backpack needed to be refilled twice a week at Nationwide Children's at an exact time; missing this time by more than a few hours would result in Myla having to be admitted to the hospital to restart the medication. Myla has been in remission since 2020, completed two month-long rounds of this immunotherapy drug, and finished all of her leukemia therapy in 2022.

In addition to her participation in the study, Myla spent two weeks in an inpatient rehab program, where she worked with physical and occupational therapists to gain back the strength she lost from CMT. Today, Myla walks unassisted, despite having permanent nerve damage in her feet. Myla has routine check-ups with her medical team. Due to the rarity of her case, they are unsure if she will experience another CMT flare-up.

Now, Myla is a happy, thriving 10-year-old who enjoys dancing, bike-riding, and learning. Despite all she has been through, she remains positive. “Myla keeps a smile on her face and takes things one day at a time,” says Katie.