In 2016, Josie Divoll’s mom, Erica, suddenly noticed that her little girl wasn’t energetically toddling around exploring the world like most 2.5-year-olds. She was sleeping much more than normal, had dark circles under her eyes, and was wanting to be carried all the time. As a nutritionist, Erica thought Josie might have low iron, so she took her to the pediatrician. The doctor listened to her concerns and ordered bloodwork to be taken. That night, a Friday, he called and said the numbers were way off, but to come back on Monday to have blood redrawn—unless she spiked a fever, which she did on Saturday night.
Erica and Josie’s dad, Ian, took her to the ER as recommended. After a long wait in their local hospital in Vermont, they were told that an ambulance would be taking her to Boston Children’s Hospital, nearly 3 hours away. Never at any time did their mind think the word cancer. They thought that maybe Josie had a virus and would be sent home the next day. The next day came, however, with a diagnosis of high risk B Cell Acute Lymphoblastic Leukemia. Rather than going home, Josie was admitted that night and was not released for another 106 days.
Josie began the routine treatment for high risk ALL, and the cancer was gone within a few weeks! That didn’t mean treatment was over, however, the treatment plan would span at least 2 years. During this time, Josie developed several secondary issues from being in the hospital and on chemotherapy, which destroys the immune system. She got typhlitis, which is an inflammation of the colon, and was put on TPN (nutrition provided directly into the bloodstream). Soon followed painful kidney stones. She was beginning to lose a lot of strength, and started to have high fevers that would not subside, which was believed to be caused by a fungus. After over a week of no success in finding where the fungus was living in her body, they found it in her eyes. To this day she has scar tissue within both eyes, one being infected enough to impair her vision slightly.
Once released, she was tube fed as she still had issues with her colon, and due to a side effect from one of the cancer drugs, she lost strength in her body and had to learn to sit up, crawl, and walk again. This took several months of weekly physical therapy. The monthly steroid treatments she received in the last year and a half of treatment were extremely difficult to manage, as it turned their sweet Josie into an agitated, irrational child.
Yet Josie persevered through her treatment with strength and ease. She liked to be pushed on her bike, and loved to play and cuddle with our cat, Tinkerbell. Though her weakened legs from treatment caused her to fall more than she would otherwise, she still liked to run as fast as she could everywhere, and race with her friends. She was able to start pre-K, and blossomed from being with other kids; and fortunately the school was flexible with her needs when she was feeling off from her medications. She loved to draw, and going to the doctors for appointments was usually exciting, as she knew she often received a little toy form the “medicine store,” aka the pharmacy; as well as gifts at the clinic.
Josie competed her last round of chemotherapy almost exactly 2 years after she was released from that 106-day stay in the hospital. ALL is a cancer that has a good prognosis, but does have one of the longest post-cancer treatments and also a potential lifetime of side effects. Her muscle weaknesses still require physical therapy and her vision, although stable now, will likely degrade at a young age. Josie has one more year before she is 5 years off treatment and staying cancer free, which would mean she is considered cured!
Once Josie was done with treatment, the emotional toll childhood cancer takes on a family surfaced. Erica found herself being more upset and angry and short tempered than usual. “I was surprised that I was feeling this way, as everything should have been fine–she was cancer free and done with chemotherapy. It took me a while to realize I was still recovering from the trauma of what we went through.” Certainly not a day goes by that Erica doesn’t think about Josie’s experience or the experiences of other children that are currently in treatment or have died from their disease.
Erica has this advice for the caregivers of children with cancer, “Try not to think of the worst case scenario with everything that happens. I was only able to “hold it together” because I tried to see the positive in the situation, no matter what it was. That doesn’t mean you are not allowed to be angry-be angry! Allow yourself to feel all the feels, recognize them, and try to find healthy outlets for the frustration. Find other families in the cancer community and tell each other your stories. There is strength is hearing what others have been through. Time truly heals, and having a child with cancer is so deeply traumatic, so allow yourself that time to heal.”
Erica told us that her experience at a Rett’s Roost retreat in 2019 was so much more impactful than she expected. She felt the power of being with others who went through a similar traumatic experience, which has been really important in her healing process. Since then, Erica attended two other retreats as a volunteer and support staff. We are so grateful when families that participate in our programs then give back in this way to our organization. It’s the beauty of the Rett’s Roost community.
