Light Yourself on Fire - Part 1

Jack Hoffman with Scott Shirley of Uplifting Athletes

Light Yourself on Fire - Part 1

Monday, September 25, 2017

A look back at how Team Jack got started 5 years ago.....

By: Andy Hoffman

I will never forget the day that my son Jack had a life-threatening grand mal seizure in our small hometown of Atkinson, Nebraska. As Jack’s lifeless body laid on the emergency room table, medical personnel tried to intubate him to prepare him for a life-flight to Children’s Hospital Omaha. It took three tries. As I watched and worried, I remember telling myself that this was probably the last time I would ever see him alive. Through the grace of God, a little over 8 hours later, Jack would wake up from a coma, able to recognize the members of his family. We soon learned that what caused Jack’s grand mal seizure was a brain tumor in his temporal lobe, next to his brain stem and encasing his cerebral artery.

After hearing Jack’s diagnosis, I initially consoled myself with the thought that thankfully we now live in an age where so many medical advancements have been made, that certainly there is a cure for whatever it is my son is now facing. After all, modern medicine is now helping people survive the worst diseases known to man.

Not so fast. We would soon find out that the best chemotherapy regimen available for Jack was invented in 1982, before the internet was even invented. This is devastating to a parent. This is brain cancer for crying out loud.

The national statistics for pediatric brain cancer are show stopping. Thirty percent of all children diagnosed with a brain tumor will die from it. This stat has remained the same since the 1970’s. Some versions of the disease, in particular, diffused intrinsic pontine glioma (DIPG) are terminal upon diagnosis. There is no effective treatment. 1982. That’s the year the first line of therapy came in to existence, and it has yet to be replaced.

No Money For Kids

So as an inflamed parent, you begin asking the question, why? No matter how many times you ask the question, the answer is always the same – there is not enough money available to fund research. In fact, of all cancer research dollars that the United States government spends on cancer research, less than four percent of every dollar is spent on pediatric cancer research, let alone child brain cancer research. Combine that with the fact that major pharmaceutical companies are not interested in investing in the development of new drugs that would benefit only 4,600 newly diagnosed pediatric brain cancer patients, there is no financial incentive for these drug companies to try to develop any new treatments. For that reason, a huge gap is created in the funding of pediatric brain cancer research.

So who fills the gap? The answer might be simpler than you think. You do. I do. We do. Parents do. Friends do. Husker fans do. To highlight this point, in 2016, approximately $15 million was invested in pediatric brain cancer research by 200 different private foundations. One of these was Team Jack. These small foundations all across the United States provide the fuel for the funding of childhood cancer research.

Ordinary Redefined

When your child is first diagnosed, you go through various stages of grief. The first stage is where you simply want to stick your head in the sand and pretend it didn’t just happen. You would like to wake up and pretend that it’s all just a bad dream. Then, as the fog begins to lift, you start to think about how maybe your son or daughter won’t get to go to their senior prom, play high school sports, or be around in a few years. You get tired of reading survivor statistics from Google searches. Then after about 12 months, you come to the conclusion that this is your new ordinary. You have a son or a daughter that will have to undergo routine scans and treatments to prolong their life until something better comes along, and if you are so blessed along the way for it to actually cure your child, well then than that’s even better.

Praying several times a day becomes your new normal. Hugs become bigger and stronger. Family becomes and is the priority. But through it all, there comes a point in time where you just get pissed. And not pissed because your child has been diagnosed with an incurable disease, but pissed because the politicians in our country have let the children down, the big drug companies which spend nearly eighty percent of their entire financial portfolio on marketing, have let you down, and because nobody seems to care that children have to undergo archaic, painful, and life-threatening treatment, just to be kept alive. Instead, the news media in our society is much more concerned about what food is being served across the country in public school lunches.

After learning that Jack was going to have to undergo 1982 chemotherapy, and that the medicine could destroy his kidneys, I became more educated on the treatment. The more I learned, the more disturbing it became. From potential skin diseases, secondary cancers, and other organ failures, the medicines that would be injected into Jack’s body were so toxic that if there was a spill, it would have to be treated like a radioactive cleanup disaster. And so that became all that I would ever talk about. I became intolerable. If people asked me about my son Jack, after telling them of his current medical status, I would then go off on the lack of research funding for children with any form of childhood cancer.

Light Me Up

In April of 2012, the night before the Spring game (one year prior to Jack’s run) I had supper with the founder of Uplifting Athletes, Scott Shirley. Scott was in Lincoln to present Rex Burkhead with the Rare Disease Champion Award the next day at the spring game. During supper, I told Scott about the horrible treatment options for kids with cancer. After listening, Scott then told me his story. He told me how when he was playing wide receiver for Penn State and his father was stricken with kidney cancer, that he and his teammates decided to do something about it. They started raising money for kidney cancer research. He told me that he had been told his father would die in a very short period of time because of the lack of research funding for kidney cancer. He also told me that while his father eventually died from kidney cancer, his father actually lived within two months of receiving the benefits of his labor and being able to enroll in a national clinical trial funded by Scott and his teammates. The moral to Scott’s story was simple – fight like hell. After Scott got done telling me his story, he looked at me and said, “Andy, do something about it. Jack is still alive, you can make a difference. But you have to go. You have got to go.” Scott lit me on fire. I left supper that night with a new purpose in life.

Read Part 2.

Comments

Our grandson Lucas Richards was treated for liver cancer also in 2012 at age 3 at children's. The feeling you shared were all so true when faced with such a diagnosis. I commend you for your continued fight. We thought we would loose our dear Lucas but five years have passed and the chemo & a new liver & a true miracle we believe has happened. Continue your fight ! You are amazing !

In 2000 I was diagnosed with a brain tumor. I had surgery and the doctors removed the tumor. I underwent 3 rounds of kemo. Jan 2 2001 I started 6 weeks of radiation. I just turned 45. NEVER GIVE UP!!!!!!!!!!

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