24 September 2013

(My friend, Sheryl Northrop, has been a tremendous supporter of Causes & Effect since it launched in January and today, I'm proud to post her second guest blog. As Sheryl talks about the urgent need for dollars to fund research for children's cancers, she also reveals how cancer has touched her family in this moving blog. — Melinda)

September is National Childhood Cancer Awareness Month. It seems like the word cancer is so much more prevalent in society these days. Is it because more people are being diagnosed? Or just that as a society we are becoming more aware and more open about discussing it? There was a time not so long ago when it was something whispered, a devastating diagnosis for all involved from the patient to family and friends--but not openly shared.

Today we see cancer patients portrayed in the media whether on shows like HBO’s acclaimed series “The Big C,” in films, in books, or when celebrities such as Robin Roberts or Michael Douglas speak candidly about their own courageous journeys through the cancer experience.  

Few of us are fortunate enough to be wholly untouched by the disease. 

A few years ago, a work colleague started blogging about his own family’s heartbreaking cancer ordeal. Reading the blog I learned a lot, perhaps the most important fact being that pediatric cancers are NOT adult cancers in a smaller body. 

Cancers that strike children are their own monsters and require different battle plans and protocols. 

When my husband was diagnosed with stage IV melanoma in September 2010, our life changed dramatically as we were thrust into the front lines of something that happened to other people!  It became an endless roller coaster of emotional ups and downs, doctor appointments, hospital stays, tests, jumping through hoops at our HMO and endless hours for me spent researching on the computer, talking to doctors, other melanoma and cancer patients, and basically anyone I could about this disease, our particular situation, and options we might have in successfully treating it.  Not to mention taking care of the patient who underwent two major surgeries in two months and our middle school-age daughter. Melanoma is an aggressive cancer that claims thousands of lives every year. While there hadn’t been any new drugs to fight this type of cancer in two decades and the treatments our HMO doctors recommended offered bleak hope at best, we discovered that several new drugs were being tested at the time through clinical trials. We were lucky.

Lucky because we had options. Lucky because thousands are diagnosed with melanoma each year and lucky because each year millions and millions of dollars are spent on research.  Clinical trials, where new drugs are tested on human patients, have kept my husband alive and thus far stable.

Unlike melanoma, breast cancer, lung cancer and some of the other more “popular” cancer varieties, most childhood cancers affect a much smaller percentage of the population. 

Another thing I’ve learned: Overall, pediatric cancers get a miniscule fraction of the funding that goes into adult cancer research and development. Why? Simple. It boils down to money. There is far less financial incentive for drug companies to devote hundreds of millions of dollars to develop drugs for cancers that affect a few hundred new cases a year versus tens of thousands.

But kids get cancer, too. When my daughter Sarah was in first grade, a girl in our area was undergoing treatment for brain cancer. After spending a year in and out of hospital and undergoing brutal chemo treatments and losing her gorgeous curls (but not her indomitable spirit), Marisa finally went into remission. The following year Sarah and Marisa wound up in the same class and became friends. Our friend Andreas is 17 and has been fighting osteosarcoma, a rare pediatric bone cancer, since 2009. I won’t list everything this remarkable young man has been through in the last four years but I can confidently say I have no idea how he or any other cancer kids find the courage and strength to endure the treatments that allow them to wake up and live another day. Something that far too many of us take for granted. 

I learned a lot about what it takes to advocate for a cancer patient from Andreas’ mom, Debbie, who is now one of my closest friends, and probably a big reason why I even knew about clinical trials and how effective they can be, at the very least, in buying time.

Last year Debbie and Andreas introduced me to Teagan Stedman, one of the most remarkable young men I have ever met. Soft-spoken and unassuming, this 13-year-old middle school student is the driving force behind Shred Kids’ Cancer, a Thousand Oaks non-profit he has successfully run since he was eight, when a friend’s brother was diagnosed with leukemia, and Teagan felt compelled to do more than just ask how he was doing.  The organization is run entirely by young people (with adult guidance) and is dedicated to serving the community by offering kids the opportunity to use their creativity and organizational skills to help their peers who are battling cancer. 

Five years later, Shred Kids’ Cancer has raised more than $100,000 for pediatric cancer research and has awarded grants to Children’s Hospital Los Angeles and Mattel Children’s Hospital at UCLA. Sunday morning Shred Kids’ Cancer held Rock The Run, Vol. II, where more than 600 turned out to run or walk for the cause. While I was excited to see so many people (last year’s inaugural RTR brought out 150), it was also bittersweet and an all too real reminder how desperately childhood cancer research funding is needed.

Like 40 other RTR participants, I opted not to wear the official race shirt. Instead I put on a bright red t-shirt with a ladybug over my heart in memory of our sweet “ladybug,” Marisa. Despite being disease-free for nearly eight years, her cancer returned last year and without real options for a clinical trial that might have saved her life, Marisa, a beautiful young woman with a true sweetness, kind heart, a zest for life and utterly contagious smile, passed away in March. She was 15.

-Sheryl Northrop

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