"Alma's Journey: Facing a Rare Tumor with Courage and Hope"

Alma Stillman is nearly five years old, loves attending kindergarten, plays joyfully with her friends, and appears like any other child her age. However, her story is extraordinary. Her mother, Manor Rachel Stillman, describes her as a "little hero," acknowledging the challenging 18-month journey they’ve undergone, from the discovery of a rare tumor in her leg to completing demanding treatments.

"It was an indescribable journey," Manor Rachel shares with emotion. "Looking back, I know it was only our unwavering faith in Hashem, Alma's unique zest for life, and the optimism that accompanied us throughout that gave us the strength to persevere."

Now, Manor Rachel chooses to recount their experience to demonstrate that even in the darkest moments, there’s always a ray of hope. Alma's story is proof of that.

Illustration from the book

Embarking on the Journey

Manor Rachel, a professional who had long counseled women, parents, and couples, also practiced holistic and cognitive behavioral therapy with children and youth. She never imagined she would need to use her therapeutic tools for her own daughter.

"It all began when Alma was three and a half, and a suspicious lump was found in her leg," she recounts. "After an MRI, it was confirmed to be a tumor in her leg muscle. We were in shock, but we didn’t have time to process because we were immediately thrown into a journey starting with invasive tests and ending with a complex treatment plan. Alma 'won' the whole package - radiation, chemotherapy, and surgery."

How did you explain her condition to her?

"Though Alma was very young, she was verbal and smart. We explained that there was something in her leg, which we called ‘the lump.’ We put an ice cube in a cup, poured water over it and showed her how it melted. We explained that chemotherapy works similarly, shrinking ‘the lump’ until it can be removed. We never referred to the hospital as its name; instead, Alma coined it ‘the doctors’ house,’ a term embraced by everyone, including the staff."

"Throughout the treatments, we supported Alma with many imaginative stories and anti-nausea foods, minimizing side effects. Alma wasn't aware she was 'supposed' to feel these effects, so the psychological impact wasn't there, enabling her to handle the treatments relatively well."

Illustration from the book

Overcoming Without Trauma

As with any oncology diagnosis, Alma received a structured protocol. Manor Rachel notes they were presented with a plan right after diagnosis. "Once doctors identified the tumor type and location, they explained the upcoming year-and-a-half plan, primarily involving radiation treatments performed in Austria where we stayed for three months."

"In Austria, I decided against further full anesthesia for Alma. Given her young age, she had already been through many back home, and we wanted to avoid that," Manor Rachel recalls. "We explained this to Alma, and with remarkable understanding, she cooperated. She was the first child her age to undergo several tests without full anesthesia, remaining still for 20-minute radiation sessions with background stories and meditation exercises from us. Even during MRI and CT scans, she was a real hero."

How do you explain her success at something adults often struggle with?

"Though young, the sense of success empowered and delighted her. This showed us we could use it as motivation to encourage her cooperation with treatments. Children naturally desire success, and because they don't fully grasp the situation, they don’t experience trauma. Alma still recalls Austria fondly and asks, ‘When are we going again?’ For her, it was an adventure, while for us it was a hard time, dealing with intensive radiation and chemotherapy in a rigorous protocol."

After returning home, Alma faced a long rehabilitation phase, initially requiring a leg cast. "We strictly followed medical advice and on non-hospital days, kept Alma at home to avoid germs," Manor Rachel says. "But one morning, Alma simply gathered a few things, stepped outside bald, and declared she was going to kindergarten. I ran after her, only to be told, ‘Mom, kindergarten makes me happy, and I’m going there.’

"At that moment, I realized kindergarten happiness was as crucial as medical treatments for her recovery. Despite doctors’ orders against it, we spoke with the kindergarten teacher and got permission to attend together daily. I became her medical aide, staying by her side, doing all I could to keep her safe."

Did the other kids accept her?

"Yes, with proper transition, they embraced her naturally. One mother even shared her daughter’s wish to shave her head like Alma. Day by day, I saw how crucial the mental aspect is, sometimes taking calculated risks to prioritize it."

In hindsight, how do you explain your courage over those 18 months?

"I believe we were given strength from above, plus much external support. Maybe that’s why I never felt afraid during this time. There were struggles, but not fear, because I always connected to our faith in Hashem."

How is Alma now?

"We finished treatments over a year ago and are now in follow-up mode. Alma attends kindergarten daily and joyfully plays with her peers. She reintegrated effortlessly since she stayed connected all along. Truthfully, it’s been a tough adjustment for me, having spent 18 months constantly by her side."

Illustration from the book

A Unique Children’s Book

After a year-and-a-half break from work, Manor Rachel has returned to her job and embraced a project to create a children’s book for kids in similar circumstances as Alma, during hospital stays. "My husband and I love books," she explains, "and we always choose stories that resonate with our children's experiences."

"We wanted a book for Alma meeting a character going through something similar, but we found none. There were books for children about their parents’ cancer, and an outdated, torn children's book, but nothing else. I remember Alma, our four-year-old at the time, yearning to pin a flower clip on her hairless head. That’s when I envisioned a book with a bald yet beautiful, strong, and decorated heroine."

"Immediately after treatment wrapped up, I began writing. The book targets ages 3-6 and follows a sweet and curious girl through the experiences of medical tests while she still had hair. It shares her response strategies, such as deep breathing and affirming words like ‘I am brave and strong,’ using hugs too. Later she’s bald but still sweet, with a shining spirit, conveying my aim of delivering optimism and simplicity rather than a somber process. My professional expertise is embedded, offering amazing tools for managing fears alongside ones I adopted as a mother during challenging and frustrating moments."

Who is the book for?

"I’m not aiming to mass-market it, but rather focus on specific audiences, like hospital departments and children. Oncology department charities will distribute it. We’d gladly offer the book to anyone embarking on such a journey. Amidst dealing with illness, tests, and worries, the child often gets overlooked or seen as too young to understand. This book is specifically for them, and we hope to support these brave children and their families."