Finding the light amidst brain tumor treatment

Sloane is a busy kid, whether she’s climbing furniture or playground equipment, strutting around on her tiptoes, or giggling with her big sister as she chases her through hospital hallways. She loves to try new things, saying “Nonie do it,” since she can’t quite say “Sloanie” yet. But when she got sick, her vibrancy dimmed, and she was not her normal, silly self.

Sloane is enrolled in the St. Jude SJiMB21 clinical trial. The trial is studying the best treatment routes for children under the age of 5 with newly diagnosed medulloblastoma. For the last six months, she has been undergoing a tailored treatment. However, as is often the case with cancer therapies, she has also experienced side effects — among those is mucositis.

Mucositis is inflammation of the mucous membrane lining the mouth and throat that can develop into sores, making eating and drinking difficult and leaving patients more susceptible to infections. It is a common side effect of therapies such as chemotherapy and radiation therapy.

It was painful for Sloane and worrisome for her parents.

“Shortly after we started treatment, we noticed 12-15 sores just in her mouth. She was drooling, and she didn’t want to eat or drink. It was pretty noticeable,” her father Tim said. “We really wanted to know what we could do to make this better. One of our nurses suggested we try the Light Therapy Program. We had someone in our room the next day to walk us through it.”

The Light Therapy Program at St. Jude uses photobiomodulation, or red-light therapy, to reduce and prevent mucositis symptoms in patients. Photobiomodulation applies specific wavelengths of low-level light to mucositis-affected tissues to reduce inflammation and trigger cellular repair. 

For parents, it is a relief to be able to reduce side effects and increase their child’s quality of life. For children like Sloane, it becomes something bright in their day. “We’re probably the most well-liked program, where children are concerned,” explained Hannah Clugh, RN, Light Therapy Program coordinator. “We offer things that don’t hurt and can be fun.”

The red-light therapy sessions are often a highlight for Sloane, both when she comes to the clinic and when she’s at home. “We try to make it fun. They gave us a red-light wand to use at home that goes into her mouth to target specific spots. We use it all over to make sure we get full coverage, and when we do, it lights up her cheeks and sinuses,” said Tim. “Sloane likes to turn off the lights and close the door so that we can do ‘Sloanie-lantern’ — like a jack-o’-lantern.”

Having a straightforward intervention that Sloane enjoys, coupled with an attentive care team, has made a world of difference. Since starting red-light therapy, Sloane has experienced a drastic reduction in her mucositis symptoms. “Red-light therapy has been a very easy process,” Tim said. “Everyone at St. Jude, and especially Hannah [Clugh], has been great about making sure we get the care we need. The red-light therapy removes a big barrier to getting Sloane’s energy back and helps her be the girl who is 100% on the go.”