At fifteen months old, in March of 2017, Max Littlefield, a happy healthy toddler, developed a low grade fever that persisted for several days with no relief. At first he was still eating and drinking just fine, but as the days went on, he was consuming less… and less. His pediatrician assured the first time parents, Sarah and Ryan, that Max was just fine. Despite the doctor’s confidence and suggestion to alternate Tylenol and Ibuprofen, Sarah had that mother’s intuition that something just wasn’t right with her son.
A few days later they returned to the doctor’s office. The medicine hadn’t helped, he was eating less and less, was exhausted, and was generally not himself. Fortunately, a different pediatrician took the time to sit and listen to their concerns. She was honest with Sarah—she didn’t know what was going on, but recommended they head to Maine Medical Center’s Emergency Room just where they could run some tests.
At Maine Med, they were quickly offered a room in the pediatric area. Max sat on Sarah’s lap, exhausted and cranky and not wanting anyone touching him. A very calm, kind and gentle male nurse knelt in front of him and spoke to him in the kindest way until Max trusted him. He looked Max all over got some standard data and poked at his belly a bit. A short time later they were told that Max would have an ultrasound of his abdomen to rule out blockages of any kind. Sarah remembers seeing the CT technician’s face knowing something was there… just no idea what.
After waiting for what felt like an eternity, an entire team from the ER as well as a team from the Barbara Bush Children’s Hospital–attending doctors, medical students and nurses–paraded into the already crowded space. Sarah remembers, “They all stood there and looked at us with sorry eyes and cold bodies. I remember thinking… ‘just *&#$ tell me already.’ I don’t remember the language they used, but I remember screaming… wailing and sobbing uncontrollably. We were taken upstairs to the Children’s floor and told an oncologist would be meeting us at some point over night.”
The next day Max had an MRI and surgery to make sure the tumor wasn’t metastatic. He also received the official diagnosis of embryonal rhabdomyosarcoma. His port placement surgery was set and discussion and decisions related to treatment were happening. Max went through half of his chemo regimen, had an eight hour surgery to remove the mostly necrotic (ie., dead) tumor, followed by more chemo and proton radiation at Mass General in Boston. In Maine they had their community. They knew the nurses and doctors… child-life, the volunteers, the cleaning staff… they knew everyone and everyone knew them. In Boston they felt like just another number. It was incredibly painful and isolating.
One of the hardest moments came in May of 2018, when they received the phone call that Max had relapsed. He had finished a year of treatment and had just completed his first CT scans (three months later). The oncologist called, somber and apologetic… “I’m sorry Sarah, it’s back, there’s three new tumors and we suspect there’s more.”
The oncologist in Maine suggested they go to Boston Children’s Hospital to get a second opinion. They went, reluctantly, since their first experience in Boston had jaded them. The young pediatric oncologist told them to, “bring him home, make all the memories we could, take as many pictures as would fit on our phones… the likelihood of him surviving the cancer was less than 10%…. as he’d most likely not survive the grueling relapse chemo regiment.” Once again, they felt like a statistic at what was supposed to be one of the best pediatric cancer hospitals in the world.
When Max finished the front line treatment of the relapse protocol in 2019, he started maintenance therapy. Due to his risk of relapse and because of how well he handled the maintenance regimen the team decided to keep him on it for as long as possible. In March 2023, it was finally time to take Max off of the maintenance drugs, since going any longer would cause serious damage to his internal organs. Sarah told us how scary it is to be off of treatment now, knowing Max’s high risk of relapse. But seeing him go to school, interact with his peers, and do all the stuff healthy seven-and-a-half year olds do, is worth the terrifying anxiety.
Max played outside through all of his treatment. It was important to Sarah and Ryan that he have as normal a childhood as possible despite his cancer. He played in the mud, he sledded, he became proficient on his balance bike, he played with his cousins, he camped and swam, he ate ice cream and tacos, burgers, and funny enough, an awful lot of kale salad. He spent an exorbitant amount of time riding in a Kinder-Pack on Sarah’s back or front.
Max is creative and artistic—he loves making things out of recycled goods. He loves to move water and come up with creative ways to do so. He loves to be outside, climbing, hiking, running, swimming, rope swinging and jumping on the trampoline. He adores his friends and family. Max’s cancer has allowed Sarah to see more clearly the daily joys of raising and interacting with him, all of the little moments. Her advice for a newly diagnosed family would be to build a cancer community. There is no other way to ease the emotional burden of caring for a child with cancer than meeting other parents who GET IT, who truly understand your fear, anxiety, worry and how complicated and precious life is. This summer Sarah and Max finally got to attend a Rett’s Roost retreat, and they treasure the memories they made with other families like theirs.
