Sitting in her parents Nappanee, Indiana home 25-year-old newlywed Anne Valdez talked about her nearly three year battle with Glioblastoma, an often fatal brain cancer.
Married just last months, Anne and her husband, Remi have been through a lot together. And her parents, Rex and Carrie Hochstetler have also been at her side.
Plagued by headaches for more than two years, Anne had been seeing a neurologist. But explains it was her eye doctor, in November of 2009, who noticed something wrong. " I had gone to my eye doctor for just a normal eye appointment and he was really focusing on the back of my eyes and something he said just wasn't quite right."
An MRI showed a plum sized Glioblastoma, one of the deadliest forms of brain cancer.
Just 22 years old, Anne couldn't believe it.
"I was stunned, I didn't say anything. I didn't know what to think and within the next week I was in surgery."
Annie's tumor was removed, she underwent radiation and chemo but a year later the tumor started growing back.
Her husband, Remi says it was hard to comprehend.
"So many things go through your mind, like 'what's going to happen to her, what's going to happen to us. You know, what's the future look like?'"
Anne admits she thinks about the future too, but she's not a quitter. When her mom Carrie heard about the study at the Cleveland Clinic involving a virus called Toca 511, injected into brain cancer, Annie wanted in.
Only 36 people were chosen nationwide for the phase one trial, but Cleveland Clinic Neuro-Oncologist Michael Vogelbaum says Annie is a good candidate.
"First of all, Annie had a relatively small recurrence and for this initial trial we are doing a single injection into the tumor so a smaller tumor is better to allow time for the virus to spread."
Dr. Vogelbaum says the virus is just the delivery agent and doesn't harm the healthy part of the brain. "The Toca virus is one that does not kill the tumor cells itself. It delivers the suicide gene to the tumor cells. The cells reproduce the virus and spread it throughout the tumor."
Several weeks after the virus was injected, Annie started taking a drug the suicide gene converts into a well tolerated chemotherapy called 5 FU..
Dr. Vogelbaum says the hope is these suicide genes could one day be the norm in treating all types of cancers and Annie is glad to be part of that future and had a good checkup just two weeks ago, saying, "So far everything looks good, the medicine is doing what it's supposed to be doing. They said there's no sign of any new growth ore anything else."
Dr. Vogelbaum says suicide genes have been around for a long time with decades of research. The key he says is getting them into the tumor cells.
They are hoping this new virus does the job. "We're very hopeful that we will continue to make progress and, as we've seen in other cancers, the big breakthrough is always just around the corner, but once we're there it can be very dramatic."
With their storybook wedding now behind them, Anne, Remi and her parents plan to be part of that dramatic find move on with their lives.
Rex says he feels extremely lucky his daughter has a chance to take part in this study.
Her mother Carrie says she hopes that their lives even out a little bit, adding, "it's been a crazy ride now for three years."
As for Remi and Anne. Remi says, "we'll keep working and our future looks better now than it did when it first started." And Anne says they have bigger plans once doctors give them the okay, "Just getting through and maybe starting a family."
All hoping and praying that a gene with a death wish will give them that chance at life.
For more information on the Cleveland Clinic and the Toca 5-11 study we have a link on the bottom of this story. We'll also stay in touch with Anne and let you know how she is doing.
And an interesting side note on brain tumors: It turns out dogs provide more than just companionship and unconditional love. They may also be critical partners in the fight against brain tumors.
Dogs and humans have similar brain tumors and veterinary neurologists are also treating dogs with brain tumors with Tocagen with some success.
Success they hope will save the dogs and help further treatment in man's best friend.