“I’m sorry, but we have found a 3cm pilocytic astrocytoma on Victor’s brain stem. We must immediately transfer him for brain surgery. Do you have a preference between Duke or Chapel Hill?”
The words spoken by the hospital’s medical team stung me, paralyzed me, echoed in my very being…brain tumor? Victor? But he’s only 16.
We just adopted him and his identical twin, Martin. They’ve been abused their entire lives…we have only had one year together.
Brain tumor? But we came to the hospital for a wrestling injury!
I turned my head ever so slightly back toward Victor. He was lying in the hospital bed as my husband, Jay, stood by his side. Tears rolled down this precious child’s cheeks. I could barely breathe.
What do we do? What is going to happen? Why Victor?
On December 27, 2013, Victor entered the OR at Duke University Hospital in Durham, NC, for a tumor resection. Twelve hours later, the surgeon declared success. However Victor’s body never recovered.
Victor spent 9 consecutive months combined between Duke and then Levine Children’s Hospital in Charlotte, NC. He was diagnosed with Locked-In Syndrome and Posterior Fossa Syndrome, both stemming from the pressure and then removal of the brain tumor. Up to this point, Victor has now spent 15 months out of the past 25 months in the hospital and has had 34 surgeries/procedures on his body, all stemming from complications from the brain tumor. During all of this, our family has traveled the distance from Fayetteville, NC to Charlotte, NC for his more recent hospitalizations and his numerous appointments. It is a daily nightmare to live in. Victor cannot swallow, speak, sit up, blink, move or walk freely. He relies on us, his family, as well as his caregivers to stay with him while he is trapped inside of his body. The financial strain and worries are enough to suffocate us at times, but Victor hasn’t given up…and neither have we.
Victor and his twin, Martin, were adopted when they were 22 months old, then given up again at age 16. We were happy to add them to our family on December 31, 2012. The twins had endured years of abuse up to this point. They were used to adversity. However, the diagnosis of a brain tumor has now left the once star wrestler of Cape Fear High in the match of his life. Each day, Victor has used his tenacious spirit to give life all he can. From September 2014 through June 2015, Victor used sign language to complete his senior year of high school. He spelled out every single word he needed to communicate to finalize his 4 years of AP and Honors courses. While his friends attended football games and completed college applications, Victor remained on home-bound or hospital status. On June 11, he left his second lengthy hospitalization in Charlotte to attend his high school graduation in Fayetteville. With great fortitude and stamina, he took 3 steps across the stage to accept his diploma, graduating with a 4.5 GPA. He was then whisked back to Charlotte to continue his hospital stay. No graduation parties for Victor.
Victor’s story is not about tragedy, but of hope and the will to live. No one is ever prepared to hear the words, “brain tumor.” And no one is certainly prepared for what kind of aftermath comes from such a diagnosis. However, as Victor’s twin attends Chapel Hill, and all of his friends have parted ways to search out their niche in life, Victor remains faithful to his own fight – his fight to live against the diagnosis of a brain tumor.
The Hottels are now supporting the upcoming Charlotte Brain Tumor Race on Saturday, April 2, 2016. Though Victor’s condition may prevent the Hottels from being at the event in person, friends and family are rallying together to form Team Victor and will be there to show their support.
The following is a post from the Team Victor Facebook Page:
To support and raise funds for children like Victor – and everyone else battling this awful disease – please check out our full list of Spring 2016 Events to unite in the fight against brain tumors.