Childhood Cancer Awareness Month: Meet Sisi
September is Childhood Cancer Awareness Month. For Chai Lifeline Canada’s part in raising awareness, we will be sharing stories of the children with childhood cancer and their families that we support with programs, services and love.
Meet Sisi, her mother, Galit, shares her childhood cancer story.
My 9 year-old daughter Sisi was diagnosed with nasopharyngeal rhabdomyosarcoma at the age of 3 in 2015. After having had many miscarriages and then two children with developmental disabilities, Sisi’s arrival in my life was a special source of joy for our family. Her Hebrew name “Shai” means gift. I delighted in her every utterance and smile. She was magical and had such charisma. It was therefore truly incomprehensible that my “healthy” miracle child was suddenly and inexplicably so ill.
She went directly from the outpatient ENT clinic to Sick Kids inpatient ward where she underwent a dizzying number of terrifying tests before the diagnosis was confirmed and her treatment started. She spent the first few weeks in the ICU as the tumor was so large it was compressing her airway threatening her ability to breath. All of a sudden, I had to juggle work, care for the other children and make arrangements for their life and activities to continue, and somehow contend with my own deepest grief, terror, and mental and physical health.
What followed once the tumor had started shrinking enough for her to be discharged, were painfully difficult few months of frequent visits to the clinic for weekly chemo, dealing with side-effects and the dreaded ER visits and subsequent admissions for febrile neutropenia. Sisi had to spend 2 months in Philadelphia to receive daily proton radiation under general anesthesia at the Children’s Hospital of Philadelphia as this type of radiation was not available in Canada. It was a nightmare of practicalities trying to make arrangements for such travel and all the logistics involved and still managing the day to day of the treatments and all the associated grief; It was so difficult to put one foot in front of the other each day, encouraging Sisi to eat as she was so sick but didn’t want a feeding tube which was imminent and trying to support a little girl terrified of “the needle” and daily general anesthesia to receive radiation.
The Medical Team at Sick Kids was remarkably professional, expert, empathic, and supportive. The Team at Chai Lifeline Canada was present every step of this journey, from her first week as an inpatient and to make Sisi smile at appointments and tests, offer friendship, entertainment, support, not just to Sisi but to myself and her siblings as well. Food was delivered, toys were provided, an ear to listen to all the fears, a shoulder to cry on for all the tears, any and all services were offered with kindness and sincerity. It was a lifeline.
Even after the completion of treatment Chai Lifeline has continued to be central in our life with such selfless generosity. Sisi has attended after school programs, holiday parties, has gone to Disney, attended Horse Camp and is an active participant in so many programs that Chai Lifeline continues to offer.
Sisi survived her bout with cancer and in April 2021 the Doctors said the “C” word after 5 years of close monitoring with no recurrence. Cure. Sisi has now entered the “Long Term Survivor” program where she will still face additional challenges, but we are so grateful for her life and have faith that she will endure and thrive.
Sisi is a creative, bright, vivacious, enthusiastic artist and musician, loves her family, friends, and pets, loves attending school and learning and faces challenges with courage and dignity. Most importantly, she has deep empathy for anyone in need. She has faced such adversity in her young life but with the support of the village that makes up her support team with Chai Lifeline front and center, she is forging forward and declaring happily “Mommy, I love my life”.
I have no doubt that Sisi’s experience with cancer but also her experience of people doing everything possible to make her plight easier, contributes to the lovely, compassionate, humble person she is today and is already “paying it forward” by extending the same warmth and compassion to others as she was afforded herself