Lexyn’s Story: Creeping Uncertainty

“Amongst our day-to-day life lies uncertainty. Whether we like it or not, it’s become a part of our daily existence. Amidst the days we tend to let our guard down, the uncertainty tends to creep back up; it has an odd way of reminding us that it has no intentions of leaving.” – Ashley, mom of Lexyn

8-year-old Lexyn experienced leg pains which doctors initially thought were growing pains. But, after a field trip to the zoo, Lexyn’s pain became too great and his mom brought him to the doctor. After several doctor’s visits, scans and a biopsy, they had an answer to his pain that would change their lives forever.

In October of 2015, Lexyn and his family received the devastating news that he was one of the three out of a million children diagnosed with Langerhans cell histiocytosis (LCH).

LCH is a cancer that can cause tissue damage or lesions anywhere in the body, and it first affected Lexyn’s left femur bone, eroding portions of the bone and growing through his growth plate. Because of this, he couldn’t put any weight on his leg and had to be in a wheelchair. For a boy who loves anything and everything sports, not being allowed to run around was especially challenging. In total, he had three tumors; one in his left femur, one in his right sacrum and another in his sternum bone.

Lexyn has endured fevers, nausea and vomiting from chemotherapy, severe bone pain from the chemotherapy and other medications, trips to the emergency room and has had to take six kinds of pills. Because his cancer is so rare and complex, he’s treated at several hospitals.

Today, Lexyn experiences pain from late effects and what doctors call a femur that looks “messy” in appearance during scans. Given the severity of his left femur tumor, his family says they’ve been advised that the bone will never be “normal”. Numerous oncologists have labeled Lexyn as a complex case, but he doesn’t let that slow him down. He remains active in basketball, school and hanging with friends.

Through efforts like Time to Fly, we believe a world without childhood cancer is possible so that children like Lexyn can lead healthy lives as survivors.

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