The Inequality of Two Values

Math is a concept often lost on me. Complex equations make me appear exactly like a doltish cartoon character being taken advantage of by Bugs Bunny. I scratch my head, hold my tongue just right, and still the product does not come. Math is hard (or for my British friends, maths are hard.)

One concept which is simple enough for me to grasp is the equality or inequality of two values. Less than, equal to, or greater than. This came into play for me last week as I considered two numbers.

4007 is not equal to 28,773

28,773 is greater than 4007

4007 is less than 28,773

In the United States, the average life expectancy is 28,721 days. Being a consummate rules follower and an incredibly kind person, my mother didn’t want to take more than her fair share and only reached for an extra 52. After a very difficult battle with Alzheimer’s, she went home to heaven last week. She will be missed.

70534515_1293489244108797_8627793689332154368_nI take great consolation in the thought that a small figure was waiting impatiently behind Jesus. In fact, I can even see her pushing to get around him. As the littlest sister, there was always someone in front, someone bigger, someone to wait your turn for. And I’m sure Jesus appreciates such impatient love that yearns to be expressed.

Mom’s obituary hauntingly stated, “she was preceded in death by her granddaughter.”

Kylie lived a total of 4007 days. Math tells me 4007 is less than 28,773. The larger number is expected. The lower number is tragic. And while I’m sad about losing her, mom lived a wonderful life. She had two children and nine grandchildren who adored her, she served others tirelessly, and she traveled the world with her husband of 56 years. Before Alzheimer’s ravaged her mind, she would agree that 4007 days isn’t enough.

But amongst that diminutive number of days, some were some very good.

The day Kylie arrived was a good day that would have been better if I’d have gotten to the hospital in time for my lovely wife to get an epidural.

All Girls

Early on there were grand days of discovery – walking, singing, dancing, reading, and a love of learning that fueled her.

Days a cast list came out, snuggly mornings that led to lazy afternoons, dog days, beach days, Disney days, cat days, school field trips, good grades, visits with friends, sister days, daddy dates, sweet days with mommy, hibachi (or as she called it, hispachi), the great Labor Day cat capture, building days, silly days, smiley days, the day she found Jesus…

 

In fact, the good days by far outweighed the bad. There simply weren’t enough.

There were 321 days of cancer. Maybe it’s because the worst of those days were so bad that by comparison, some of those days feel really good. Or possibly it is because they were the last ones.

 

And now we’ve been 1664 long days without her.

Why this infatuation with days? Because we are seeking to redeem the number. On Kylie’s final day she told us to cure childhood cancer. It happens to be Childhood Cancer Awareness Month and we’re trying to raise $4007 through CURE to fight the beast that took her life. Will you take a day or two?

Maybe you could skip Starbucks today and take $4 days. Or skip Friday night’s adventure and take $25. Consider it an opportunity to add days to the life of a child!

Here is a link to Kylie’s page.

Please take a minute to read her story and pick a few days to redeem. Together, we can make sure children get their fair share of days.

 

 

 

Obsolete Technologies

In the year 1979, we were all forced to make a life-altering decision. With technology rapidly expanding, the world of standardization that was to come hadn’t yet reared its lemming-head. We still had choices and one of monumental consequence was forced upon every household in America. It was tougher than Democrat vs. Republican, Coke vs. Pepsi, Burger Chef vs. McDonalds. We had to choose between VHS and Betamax.

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My father enjoyed the electronics boom. He researched every technology purchase and in this instance, chose the Betamax. At first, I was fine with it. When I went to my local video rental store, it was split evenly between the two formats. But slowly, the VHS side began encroaching upon the Betamax section until I only had one wall from which to choose… and then one shelf… of really old movies I’d already rented multiple times. Who remembers the curtained off section in the back where I wasn’t allowed to go? As it turns out, that little room may have decided the war because the burgeoning porn industry selected VHS as its medium of choice. Proud of that tidbit VHS owners?

walkmanI’m not bitter, though. I was 12 and for the first time in history you could record and pause television. The world of technology began changing everything around me. While Sony would lose the videotape war, its release of the Walkman in 1979 was the first bold step in portable electronics.

Consider the revolution that has occurred in consumer electronics, technology, science, and medicine since that time. Nearly everything has changed. Instead of recording television on tapes, we now download it from any number of services or record it digitally. We don’t pull a World Book off the shelf because more information than we could ever explore is at our fingertips.

That dejected 12-year-old kid in Louisville, Kentucky could never have imagined what was in store while he was scouring the rejected shelf of old Betamax movies.

There is one thing that has changed little over the years, however. While science and technology has advanced at rapid speed, treatments for children with cancer is stuck in the Betamax era. I learned this when my 12-year-old daughter, Kylie, was diagnosed with Ewing sarcoma in 2014. The stunning reality was that had I been diagnosed with the same cancer in 1979, our treatments would have been virtually identical. Push pause for a moment and consider that.

There are many reasons for this, but it boils down to economic value. One could argue that the same reason Sony discontinued the Betamax is to blame for the fact that cancer claimed my little girl: There’s not enough money in it. Ewing sarcoma is one of twenty childhood cancers, and is considered rare by scientific standards. In the United States, only around 300 children are diagnosed with it each year.

imageSo in the end, it becomes a numbers game and children lose every time. There is money and economic success in the finding a cure to breast cancer with its 268,000 new cases per year or lung cancer with 228,000 cases. Drug companies are drooling over the potential windfall a cure for either of those would bring. I get it, I was in business a long time. Profits are a good thing.

But that was hard to explain to my daughter as she died and hard to stomach in the wake of her loss.

The simple fact is that we need to do better for our children. Cancer is the number one killer of children besides accidents. Every year we spend in excess of $1 billion on child safety products designed to prevent accidents, yet many researchers are leaving the pediatric cancer space because other areas of study are more lucrative. Private investment in research is what we must demand.

September is Childhood Cancer Awareness Month and I believe that someday, a brilliant researcher will find the cure. You might feel overwhelmed and consider this a problem too big to solve. To that I would say we have no choice. Children are our most precious resource and we cannot leave a single one of them alone without a cure.

A good start would be to sacrifice a cup of coffee or fancy lunch today and give a few bucks to a charity that funds research specific to children. If you don’t know one, might I suggest one named after a precious little girl who never saw 13.

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Smiley for Kylie is a non-profit organization that exists for the purpose of funding research that will lead to safer and more effective cures for childhood cancer.