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Gaylord’s Fight with Glioblastoma Story

Gaylord and William

Cancer can sometimes be a life-altering experience. It can flip your world in a matter of seconds once a few words come out of your doctors mouth. It can change the way you view things, it can cause a million emotions, and it can turn you into the fighter you never knew you were. Gaylord, Kathy, and their six-year-old son had their world drop from under them when a doctor told them Gaylord had around a year and a half to live. How do you deal with something like that? Where do you even start to process that kind of an expiration date? Kathy, Gaylord’s wife, shared with us their glioblastoma story, and how they continue to fight everyday for Gaylord’s life.

“I will never forget the day that we received Gaylord’s diagnosis.  Only 3 days prior we left the surgeons office believing that there was no cancer, only preventative treatments. The surgeon was too big of a chicken to tell us he had brain cancer.

Three days later we met with the oncologist who started out the conversation by telling us that Gaylord has Glioblastoma multiform 4. He told us that it doesn’t get any worse than that, there is no cure, only hope to slow it down with the standard care of radiation and Timador. He said it is a very aggressive cancer.  I was devastated, I couldn’t believe what I was hearing. I cried, all the while Gaylord is holding my hand staring the doctor down. When Gaylord asked what else could be done he replied with nothing and told us Gaylord has about 15 months to live. My heart never hurt so bad in my life. What was I going to tell William? How would a 6-year-old ever understand that his poppy (that’s what he calls his dad) is dying. How could he understand when I myself cannot? Gaylord is such a good person; how could this be happening to him?  He doesn’t deserve this! I was devastated.

Some of our greatest hardships through this battle have been making changes. Both physically and financially.  We have a PPO insurance and to us that meant we could go any where. We didn’t know anything about networking. No one informed us that the hospital and cancer center where Gaylord received his standard care wasn’t in the network. So our insurance only paid out $500 a day on treatments that cost $25,000 per day. Radiation was 30 days long. So now we have the struggle and worry of losing our home because that’s a lot of money.  I can say the physical and mental changes have made us stronger as a family.

The greatest comfort during this battle has been having each other and William. Gaylord is determined to not die. Our family, our friends, our community all believe that Gaylord will be that rare one to beat this killer. Also, without a doubt, UC Irvine’s Neuro Oncology staff. They have been positive since day 1. Even the head of the department told Gaylord that, if she was a betting person she would bet on him beating this. How can you not be encouraged with a team like that?

My advice to anyone with any kind of cancer is never give up. Take it one day at time and never give up hope. Reach out to other cancer centers if you must, do your research.  When Gaylord was near the end of his standard care I emailed every cancer center in California and told them our story. I wanted to know what was out there and if anything else could be done. That’s when I met Dr. Carrillo of UC Irvine. He called me last year on the 4th of July weekend and told me there is hope, he told me of Novocure and other treatments. He gave me hope when he told me there is no expiration date. So if you experience the no hope factor, don’t accept it. Look for answers.

In March of this year Gaylord’s MRI came back inconclusive. Four weeks later we did another. The tumor board ruled it as a tumor and surgery was scheduled. Denielle the secretary at Archoe school set up a fundraiser raiser to help pay for our stay and trip to Irvine.  We had no clue and when she presented us with the money we cried.  No one had ever done anything like this for us before. It cost us a small fortune every time we go to the doctors because it’s 420 miles away. But it’s nothing compared to the hope and chance of life we receive there.

Glioblastoma is the worst, but please don’t give up hope. Live everyday for what it is worth. Ask questions. There are treatments out there that give you more time, like Optune Novocure. Gaylord used it with great results up until the surgery on May 9th. I believe it works because because with Gaylord’s diagnosis, the fact he has the aggressive enzyme and the tumor boards decision to operate, the pathology report read no glioblastoma — that it was extensive treatment damage. Hey, but that is ok, because that day we came twice lucky. While Gaylord was having surgery I found out he was randomly selected to receive the trial treatment of Toca 511 virus. If this works, here is our cure, and it has a way of reading the cells. Look it up. Ask questions. Keep your hope and faith.”

If you would like to learn more about Kathy and Gaylord’s glioblastoma story, you can visit their GiveForward Page here.

Whose world will you change?