I could start this article with 1,000 platitudes. Life is short. You never know what tomorrow holds. Hug your kids. A disease is only rare until it hits your family. And so many more.
But I won’t. I will start this article with the truth. Victor is our buddy. We hung out with him at birthday parties. Met up with him at the park to ride bikes, play chase and slide down the slide. Played with him at our house. Cheered with him watching a football game at a friend’s house. Goofed in the sunshine in his backyard. We said hi to him as he raced, shivering, to the showers at swim lessons. We made snow forts at the park down the street. I spoke to him in French and English because he is completely bilingual, and he enjoyed responding to me in a jumble of the two.
Now, we go to fundraisers for the cancer that has robbed him of motion, speech and the ability to eat. I comment on a status update his mom posts on the Facebook page that chronicles his battle. I help arrange a run in a sled on a ski hill for him just to see some joy on his and his family members’ faces. I help his mom reposition his stiffened legs so that they cause him the least discomfort possible. I watch her put the stuffed animal that fell down back into his locked arms for the tenth time so that he can snuggle it. When I ask him a question, I try to understand his answers that are no longer words, no longer head nods but now only the rolling of his eyeballs up and down for yes.
That is the truth of our friend Victor. That is the truth of his disease. There are no platitudes for that.
Victor has a cancerous tumor inside his brain stem. It is called DIPG. Diffuse Intrinsic Pontine Glioma. These tumors invade throughout the brain stem, growing between normal nerve cells, making them inoperable. The oncologist explained to his mom, Julie, that if you imagine that Victor’s brain stem is a Ziploc bag filled with grains of rice, the tumor is like a teaspoon of salt poured in. It is impossible to pick each portion out.
DIPG primarily affects children between 5 and 10 years old. It is estimated that 200–300 patients are diagnosed each year in this country. Fewer than 10 percent of patients will live longer than 18 months from diagnosis. Survival is rarer still.
It is a horrible tragedy when a loved one has a life-threatening illness. Especially when that loved one is a child. This one though … it seems especially cruel.
His symptoms began with night terrors and progressed to stumbling and slurred speech. When his mother saw him drooling as he tried to speak on Father’s Day last year, she took him to the ER. He walked in a laughing, running kid and he came out in a wheelchair two weeks later. He was unable to walk and move one of his arms and was already losing his speech. The truth of his disease is that his condition has worsened each day since that time.
A year ago, Victor’s family had never heard of this form of cancer that has since torn its way through their lives. They had been a very typical Seattle family before his diagnosis. Victor and his mom, his dad, Josh, and his sister, Celestine, filled their weekends with hiking, camping and spending time at their cabin near Concrete. Victor loves anything with wheels and biking was a favorite activity. Sadly, the wheels he uses today are on a chair, not on a bike. The truth of his disease is that maneuvering him and getting him outside where he is happiest has become more and more difficult.
Our buddy Victor is a really smart kid and his mind buzzes with curiosity. Strangers and friends were met with hugs and an endless chain of questions. His brain still buzzes but his mouth can no longer form any words and he can no longer even point to things in front of him. His family now struggles to understand as they work through words, letter by letter, for him to communicate his emotions, tell them if he’s in pain or ask to hold his pet bunny, Floppy. The truth of his disease is even that small amount of communication has become extremely difficult.
Julie struggles to cope with others’ well-intentioned platitudes. Hearing that everything happens for a reason is now a cruel stab. Someone telling Josh that God doesn’t give you more than you can handle doesn’t help him during these heartbreaking days of caring for his beautiful little boy.
Thirteen children in the U.S. are diagnosed with a brain tumor each day. — Pediatric Brain Tumor Foundation
Josh and Julie want to make sure that no family ever has to face their truth again. They want the amount of funding for brain cancer research to increase. They want better treatments because so little progress has been made to date. They want doctors to research causes and cures so that brain cancers can have better outcomes. They hope that understanding this type of cancer could lead to advancements in the treatment of other types of cancer as well.
They never want another child to have to suffer the way their son is suffering. They desperately hope that other kids might one day be helped because people learned about this awful disease through Victor.
Victor’s mom and dad don’t want platitudes; they want change. They want this diagnosis to have more hope in the future. They want people to open their hearts and give generously. As Julie told me, “When people say to me, ‘We’re praying for you,’ I want to say pray for money for research.”
With that in mind, they have created a tribute fund in honor of Victor through The Cure Starts Now. 100 percent of the money raised will go toward DIPG and brain cancer research. The Cure Starts Now believes that understanding this type of cancer has the key to unlock all other cancers. Here is the link:
Last week, when Victor’s nurse was visiting, he indicated ‘H E L’ on his letter pad. Heal. Please help other kids get to our buddy Victor’s goal.
You can find out more about Victor on his Victor’s Victory Facebook page