February 9, 2005 – December 15, 2016
Diagnosed: July, 2015
Written by Sara’s sister
My sister Sara is a 10 year old girl who lives with her large family in Warren, MI. She’s one of 7 kids, all dearly loved by our parents, Reg and Gina. She’s the 6th in the bunch–4 older sisters, one older brother, and then one sister younger than her by only 18 months. I’m the oldest kid, and I wanted to share the story of how my sister is battling a very dangerous cancer—DIPG. Diffuse intrinsic pontine glioma, or DIPG for short, attacks the central nervous system of children, usually between 4-11 years of age. It is inoperable and at present there is no cure.
In July 2015, my sister was playing outside with other kids at her congregation when she fell and hit her head. She had scraped up her face pretty badly, and complained of dizziness and nausea. My parents took her to urgent care, who patched up her face and diagnosed her with a concussion. They assured them that she’d be okay in a few weeks. Little did we know what lay ahead.
The headaches Sara complained of became blinding. She spent almost a week vomiting, especially when we were driving in the car. We knew something was up because she had never dealt with headaches or motion sickness. She was also irritable and listless. Normally a bright, sassy, loving and active child, Sara couldn’t play outside for more than a few minutes and started sleeping for long hours during the day. She stopped eating and started having temper tantrums– not a part of her personality at all. She also started describing having weird visual disturbances, and she suffered from night terrors.
Concerned, my parents took her back to the hospital. My sisters and brother and I grew more and more concerned as the few hours they were downtown at Children’s Hospital turned into an overnight stay.
“What could be going on?” My siblings and I looked at each other and speculated.
We could have never known it would be so bad as this.
I will never forget the despair and the fear in my mother’s voice as she called me from the hospital. “Diane, are you sitting down?” She paused and told me, “The doctors say she has cancer. It’s in her brain. They say they can’t remove it, can’t cure it and that she has a year to live.”
My entire world shattered at that moment. I still cannot believe this is happening to our family, to my Sara, even though it’s almost 5 months since she was diagnosed. I’m 14 years older than my sister. I have been present for every day of her life. Sara has always brought everyone around her great joy. Her curiosity is like fire. Because of that thirst for knowledge, she was always fiercely independent and intelligent, but never arrogant or mean. On the contrary, despite the ability to think analytically and logically even from a young age, she has an enormous, innocent heart. A phrase I saw in the book “Tuesdays with Morrie” describes Sara perfectly–“a tender sequoia.” She is MIGHTY but gentle. I’ve watched her give 100% to all of the people whom she loves, and she has committed to being her best self. Every year she brought home perfect grades, ran around outside leading games with our siblings and with neighborhood kids and developing a strong faith in Jehovah God. How could this be happening to her? Our home life had the same weirdness and routine that I’m certain every big family experiences, but what’s extraordinary about my family is the love we share. We tell each other everything, and we hold each other close. We share meals and sleep often in the same bed after talking about our days. We kiss our parents before we leave for work in the morning. We kiss the kids before sending them out into the world to explore and do their own thing. Our family is huge, and therefore neither normal or perfect, but it is a hive of love, understanding and rest. How? How? How could this be going on and we not know it?
Sara was treated at Children’s Hospital of Michigan by a team of extremely talented clinicians, scientists, surgeons, nurses and other support staff. She stayed there 3 weeks while they studied her tumour, helped her regain the mobility she had lost that week from DIPG (she had what doctors called “long tract signs– her right side was paralyzed) and started her on a course of radiation. Her recovery from her symptoms has been what the doctors call “remarkable” and the hospital staff dubbed her Special Sara.
An enormous outpouring of love and support has helped Sara keep going. Members of the Kingdom Hall we attend, my sister’s friends and teachers at school, my friends both locally here in Michigan and in Australia, the hospital staff, the local foundation The Rainbow Connection and countless others have been supporting my sister’s battle.
As of 23 December 2015, Sara is asymptomatic. She had 30 sessions of radiation this autumn, and she is currently on chemotherapy in an attempt to manage the tumour. It shrank 30% from the radiation, and she is the Sara that we know and love. Her mobility, appetite and stamina is nearly what it once was before this summer. Despite having battled with some side-effects of the drugs she takes, her body is adjusting to them and she is able to lead a robust life right now. She goes to school at home, visits her team of specialists once a week, participates in her worship and loves all of us with the same intensity that she’s always had. My sister Iris assists her during the day with anything else that she needs, and all of us try to support our parents as they manage Sara’s care.
Her attitude is incredible.
“At times I get scared, frustrated or angry about this.” She told me over dinner one night. “But mostly, I just wake up every day and make up my mind to do my best. God is helping me. My family is helping me. The doctors are doing what they can. I’m determined to fight as long as possible.”
