Henlee

Henlee was diagnosed with a rare blood cancer called Langerhans Cell Histiocytosis (LCH) in November, after what her family initially thought was an ear infection.

Doctors discovered a tumor behind her left ear, which was surgically removed. Over Thanksgiving, Henlee traveled to Primary Children’s Hospital for a PET scan. Thankfully, the scan showed no additional tumors anywhere else in her body.

Before Christmas, and just before her fourth birthday, Henlee had a port placed and began chemotherapy. She completed three rounds of chemotherapy over the course of three months. Unfortunately, during a follow-up CT scan, doctors discovered another tumor, this time near her right ear.

Henlee underwent another surgery to remove the tumor and began a different chemotherapy treatment, which she received for the next several months. During her most recent CT scan, doctors learned that another tumor had returned on the right side. She recently underwent surgery on her right ear once again.

Henlee and her family are now waiting for the biopsy results and their next meeting with her oncologist. Her doctor is also reaching out to a world-renowned specialist in LCH in Cincinnati in hopes of better understanding why two different chemotherapy treatments have not been successful in keeping the tumors from returning.

Once doctors are able to find a treatment that works and Henlee remains tumor-free, she will need to continue that chemotherapy for at least a year. After reaching remission, she will continue to be closely monitored for five years.

Her family is hopeful that they will have answers soon, find a treatment that works, and give Henlee the chance to get back to simply being a kid and living a more normal life.