By: Christine Soussa
Raffi Arabatyan is an 11 year old superhero living in San Francisco, CA. A student at KZV, Raffi has been battling a brain tumor, which he has named Zurg, since he was 6 months old. His story is incredibly inspiring and we are delighted to feature him and his family.
Full Name: Raffi Arabatyan
Date of Birth: July 4, 2007
Enemy: Emperor Zurg
Superhero Raffi — Zurg Fighter!
Sidekicks: Dad, Mom, Zareh, Areni, Gayane, Grandparents, Dr. Sun, Dr. Finlay, Dr. Mueller & My stuffed animals!
Super Powers: telling jokes in the face of surgery, always keeping a positive and faithful attitude!
Fit for a Superhero, fireworks accompanied the birth of Raffi Arabatyan. While his birth was ordinary his life thus far is only extraordinary. After Raffi’s routine 6 month wellness check showed no signs of concern, the new family of 3 went on a trip to Napa, California. While there, Raffi’s parents, Nairi and Garo Arabatyan, noticed what they describe as an “odd shimmering of his right eye.” Grandparents encouraged them to take Raffi to see the doctor to be safe. Their pediatrician recommended Raffi be seen by a Pediatric Ophthalmologist who then recommended they see a Neurologist who conducted a brain MRI.
Nairi says, “‘I will never forget every single detail of our meeting with the Neurologist after the test results were in. She told Garo and I, ‘Your son has a brain tumor, but it can be treated with chemotherapy!’ These words and feelings stay with you, forever. We were shocked by the news. Our first child, only a baby, has a brain tumor and needs to be on chemotherapy.”
Unsure what to do, the always optimistic Arabatyan’s got to work, reaching out to a network of friends for referrals, contacts, they did endless research, got several additional opinions and remained determined to battle the brain tumor and put a stop to its growth. Raffi was diagnosed with an Optic Pathway Glioma. As an 11 year old, he has had over 60 surgeries, the longest surgery being 17.5 hours long. He and his family have endured so much, years of dealing with surgeries, scans, labs, MRI’s, EKGs, procedures, ultrasounds, you name it, they have done it. They tackle anything life brings their way with utmost love, joy and positivity.
Raffi is now on a trail chemotherapy regimen called, Lenalidomide, after many years of the tumor growing through most treatments, the tumor responded to this treatment. Recently in May 2018, two weeks before I met Raffi, he and his family received very positive news, his last MRI showed that the tumor had not grown and in fact the cyst coming off of the tumor has gotten a bit smaller! Raffi says the doctor came out and said “The tumor is in a stable position & the cyst is growing smaller!” You can see the elated joy in his face, demeanor and voice as he shares this news with me.
I continue to be inspired by the unwavering faith and positivity of the Arabatyan family! As a family of 6, they are unconditionally joyful – their joy and love is contagious and magnetic. When asked how they mange everything so gracefully, Garo simply said “the Language of Faith is positive energy, which is infectious, these words translate into happy gestures.” By every single account positive energy and faith is at the center of everything the Arabatyan family does.
Because of this commitment to a positive lifestyle, the extraordinary Raffi, in many ways enjoys an ordinary life. He is a student at KZV Armenian school, he enjoys playing with his friends and siblings. He loves to travel, enjoys swimming, basketball and playing the drums. He loves animals, Legos and cooking with his Mom, a gourmet chef who teaches her children the importance to healthy food choices every day.
During a family trip to Disneyland, Raffi loved the Buzz Lightyear ride. Inspired by the Toy Story movie, riders shoot Evil Emperor Zurg. Because of this ride, Raffi named his tumor Zurg. Each time he has a check-up, he imagines himself attacking Zurg and visualizes himself winning.
They work with a spectacular care team including UCSF Children’s Hospital Oakland Neurosurgeon Dr. Peter Sun, Nationwide Children’s Neuro-Oncologist Dr. Jonathan Finlay and UCSF Children’s Hospital Neuro-Oncologist Dr. Sabine Mueller and many others. Nairi shares, I will always remember the words of Dr. Finlay who encouragingly said, “Thankfully this is not big bad cancer, you have to look at Raffi’s brain tumor as a chronic illness. Hopefully after puberty the tumor will stop. You just have to get him through.” They knew with their outlook, strong support team, and loving community of family and friends, they could get through. Nairi shares, “As a Mom with 4 children, my goal is to keep things as normal as possible. Garo and I refused to focus on Raffi’s brain tumor only. We go with the ups and downs of it. We try not to let it be or feel like it is so out of the ordinary. Along with all the appointments and chemotherapy treatments we fit in drumming lessons and basketball and of course homework too! It’s simply a part of our day, and we are grateful for every single day.”
The unfortunate diagnosis and ongoing treatment of the brain tumor from such an early stage of Raffi’s life was difficult for the Arabatyan family, but it never shook them from the foundation of their Christian faith. “The experience of the resilience of life and the blessings that we receive each and every day with our four kids is a true testament of our Christian faith.” Surrounded by his superhero sidekicks, his brother Zareh says, “Raffi is a great big brother and a good kid.” while his sisters Areni says “He Kicks the Zurg’s butt!” and Gayane says, “I love Raffi”.
Arabatyan Family, you are such an inspiration to us all!
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I have one word for Raffi that says it all. Have told him that he is my hero, and I believe I speak for everyone who knows him and loves him. Now, he will be called “Super her.” One very remarkable young man.