Sevanah Kathleen Simmons was an active, normal six-year-old girl who loved singing, dancing her highland steps, creating artistic masterpieces, and writing and drawing her beloved monkey stories. She had 35+ monkey stuffies she fondly referred to as ‘The monkey crew’ and built extravagant monkey towns throughout the entire living room. Sevanah loved to read and learn which made home-schooling much easier for Gramma. She always had a smile on her face and a beautiful hand-made gift for friends and family; she was a little girl with a big heart.
Sevanah decided early on that she would become an inventor when she grew up and invent a machine that would clean the oceans so that she could make the world a better place. Not long after hearing about orphaned children in other countries, Sevanah made ambitious plans to travel the world and bring these children home where they would be loved—by her. These dreams were shattered April 1, 2015 as I sat in the oncologist’s office at BC Children’s Hospital and heard the words, “I’m sorry the MRI shows that Sevanah has an inoperable brainstem tumor and there is nothing we can do for her.” Those words will haunt me for the rest of my life.
Sevanah’s right eye had began crossing in periodically about a month and half before her diagnosis. She had worn glasses since Kindergarten so a quick trip to the optometrist had her in a stronger prescription in no time. However, with no improvement Mother’s instinct had us at our family doctor soon after and we were referred to a pediatric ophthalmologist. After a month and half wait, we arrived in Vancouver for our appointment and were sent immediately to BC Children’s Hospital. And so began our journey. Diffuse Intrinsic Pontine Glioma (DIPG), the most aggressive brain cancer there is, had set its sights on our beautiful girl.
We returned home from Vancouver in a daze. We wanted Sevanah to enjoy Gramma’s famous Easter Egg Hunt—her second favorite holiday after Christmas. Family and friends rallied around us and helped to bring strength and hope during an overwhelming time. We are a Christian family so it was our faith that gave us the strength to keep going and stay positive. Sevanah would regularly surprise us after a bad day of symptoms with wise words. I often wondered if it were myself or my daughter being the emotional support. Up until her last day Sevanah declared, “The Joy of the Lord is my strength” –Nehemiah 8:10. Our brave girl even prayed for a family friend that had been seriously hurt in a motorcycle accident while she lay in her own hospital bed. A beautiful, kind soul loved by all that knew her.
DIPG is an inoperable, aggressive brainstem tumour with a 0% survival rate. It takes a healthy, active child and begins to shut down vital physical functions. A child loses function of their limbs, has difficulty seeing, hearing, and swallowing. Eventually, either their lungs stop breathing or their heart stops beating and they die. A child’s cognitive abilities remain intact, and they are completely aware of what is happening to them as they endure a torturous death. Most succumb to DIPG within 9 months of diagnosis and 90% die within 2 years. No new advances in treatment have been made in almost 50 years!
Radiation is the only viable treatment option in Canada and is used simply as palliative care. After a discussion with the radiologist, our family decided against this treatment because of the lengthy list of devastating side effects. One of which is the possibility of swelling caused by the radiation which then causes DIPG to progress more rapidly. At the time, Sevanah did not have any symptoms other than her eyes crossing so we were worried about shortening our limited time with her. All the doctors, specialists, and nurses involved in Sevanah’s care were amazing, and Canuck Place was a wealth of support and information. We managed her symptoms with a healthy diet, turmeric root tea, cannabis oil and, eventually, turmeric IVs with the full support of our medical team. Despite horrible symptoms, Sevanah never once complained. Not a single time. Unfortunately, five months after Sevanah’s DIPG diagnosis she suffered a tumoral hemorrhage and died in our arms on September 4, 2015.
For parents that have just been hit with a DIPG diagnosis for their child, I encourage you to not lose hope and not waste a moment with your child. Take pictures, make wonderful memories, lean on family and friends for support, join DIPG support groups, and most importantly make decisions based on what is best for YOUR family. There has to be a first; have hope that your child will be the first DIPG survivor.
After being diagnosed with DIPG Sevanah declared, “When I get better we can help other kids with DIPG!” Sevanah’s thoughtful, kind nature and her desire to help other children is the driving force behind her family’s crusade against DIPG and a search for a cure. “The Monkey Crew Against DIPG” is our DIPG awareness campaign for a special girl with a heart of gold, forever missed.
My vision for the future is a day where a parent receiving a DIPG diagnosis for their child hears, “Your child has DIPG but don’t worry. We can treat it and we can cure it. Let’s get started.”
-Angelina Simmons (Sevanah’s Heartbroken Mom)