BALLOON KISSES TO HEAVEN: ONE FAMILY’S BATTLE WITH BRAIN CANCER

THE WHY? FOUNDATION - TOUCHSTONE THURSDAY

by Alia Tarraf

Jason and Sienna in the Stride to Save Lives walk for brain tumor research, 2006

Debra and Jason were a vibrant young couple who met their sophomore year of college in 1995. They lived in the same dorm. They spent their weekends hanging out with friends, going to dinners, movies, bars and outdoor festivals. Their favorite songs were "Man in the Mirror" by Michael Jackson and “Tiny Dancer” by Elton John. A few years later, they were married and decided to start a family. Debra and Jason were the all American love story.

In January of 2006, Debra was holding their five day old first born daughter when Jason went into a seizure. Scared and unsure of what was happening, Debra waited for the paramedics to arrive. It was three hours in the ER before they knew what was wrong. Jason had Astrocytoma, cancer of the brain. He was 30.

It seemed impossible. He was strong, athletic and healthy. Debra and Jason decided to fight. He did radiation and went into remission. But two years later, Jason was diagnosed with Glioblastoma. He had oral chemo and gamma knife radiation.

Three months later, it spread to his spine. Again, Jason had chemo, gamma knife radiation.

He underwent every treatment prescribed to him and then just a few months after the birth of his second daughter, Jason lost his battle with cancer on Feb. 21st 2009.

Debra was devastated, but she knew she couldn’t just give up. She had two beautiful young children she had to take care of.

So Debra picked herself off the floor and kept going.

HOW DID YOU KNOW WHAT TO DO AFTER THE DIAGNOSIS?

We didn't. We followed the ER doctor's advice and waited to talk to the surgeon the next day. Our insurance wouldn't cover the hospital we were at so we came home the following day, made lots of phone calls to meet different doctors and stressed over an insurance referral. It was awful. We were able to switch insurance plans and get a referral to a specialized institution.

HOW WERE YOU ABLE TO SWITCH YOUR INSURANCE PLAN AFTER HIS SEIZURE?

We had an HMO at the time which needed a referral to go to a specialized institution. We were able to finally get approval but changed to a PPO as soon as he could switch his plan.

HOW DID YOUR WORLD CHANGE WITH YOUR HUSBAND’S DIAGNOSIS?

Life became about spending days together. Jason went on disability leave right away and I took an extended maternity leave. We had lots of friends come and babysit so the two of us could spend time together. He was home with us until he had to go into the hospital for care and then later to a nursing home where he passed.

WHAT WAS THE HARDEST PART OF WATCHING YOUR HUSBAND FIGHT CANCER?

Watching him become someone he was not. He slept all the time…wouldn't eat. Watching him slip away into a different person and wonder why he was given this part of life.

WHAT DID YOU DO TO SHOW YOUR SUPPORT?

I went to every appointment and treatment with him that I could. I traveled to get other opinions. I let him sleep. I bought him McDonalds McGriddles and froze them since it was the only thing he would eat.

HOW DID YOU GET THROUGH THE DAY-TO-DAY?

I have no idea. I have a lot of amazing friends that helped us. My girls helped. I'm not sure I would still be alive today without them. I thank God everyday for them.

HOW DID JASON’S CANCER FIGHT HIT YOU EMOTIONALLY?

Both my girls were really little when he was sick. I would sit in the rocker, rock them to sleep and cry. I would lay on the floor in their room and cry while he was upstairs sick. My heart was breaking to see the strongest person I knew emotionally and physically dying. I felt lost losing my best friend and not having someone there that understood what this was like for us.

WHAT DID YOU TAKE AWAY FROM THE EXPEREINCE?

Small problems just don't really matter in the grand scheme of things. There are so many bigger things to worry about. Also, tell people you love them as much as you can. I have no regrets with Jason knowing that and I am so thankful for that being the last thing I said to him.

WHAT ADVICE DO YOU HAVE FOR FRIENDS, FAMILY AND CO-WORKERS OF CANCER FIGHTERS?

Ask for help. Seek out other opinions. Spend as much time as you can with the person fighting but also find time for yourself and don’t feel guilty about it.

WHAT ADVICE DO YOU HAVE FOR THE MEDICAL PROFESSION?

Spend money on research. Spend money on making cancer fighters more comfortable with treatment. Help them have many options in treatment.

WHAT ADVICE DO YOU HAVE FOR OTHER CARETAKERS?

Have faith. Spend time with loved ones. Take lots of pictures and videos. Be positive but also realistic. Ask a ton of questions to your medical team and know your options. Prepare yourself and your family for the worst. Help them feel ready in case they need to make medical decisions for you and how to care for themselves if you die.

HOW DO YOU FEEL ABOUT THE FUTURE?

Scared. For my girls that have to go on without truly knowing their dad. And scared that someday I might lose someone else close to me to this disease and knowing I will have to face it again.

HOW ARE YOU DOING NOW?

I am doing pretty good now. Good days and bad. I met someone in July 2011 that has been very supportive of my life. I miss Jason every day. He can never be replaced but I know he would want me to be happy and the girls to have a father figure around them.

WHAT MAKES YOU FEEL CLOSE TO HIM?
I made a CD of some of his favorite songs and I listen to it a lot in the car. I wear a pair of his socks or one of his T-shirts on a day that I'm really missing him. There are days that I swear he is sitting next to me in my car. Sometimes I'll just hold out my hand that he used to hold while I drove and talk to him.

WHAT IS A FUN THING YOU DO WITH YOUR GIRLS TO CELEBRATE THEIR DADDY?
Jason used to call the girls “Little Buggie” and “Baby Buggie”. Those are the names I call them now and they know it’s because their dad called them that. They love it. Every Father's Day and Jason's birthday, we go to McDonalds, his favorite, for breakfast and buy him a balloon to kiss and send up to heaven.

FOR YOU IN ONE WORD WHAT IS CANCER?

Shitty. If that's too harsh…I would say, “painful”.

It’s been four years since Jason passed and Debra has continued to stay strong. Their daughters, Sienna, now 7, and Sydney, now 4, are blooming. Sienna is in Daisy Scouts and loves singing, acting, putting on shows and telling stories. Sydney tap dances and is a ballerina. And they know Jason will always be their number one fan.

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