No One Ever Expects a Child to get Cancer and Why That Must Change

The commercials air every holiday season.   They’ve featured an adorable little boy trying to make a lunch date with Jennifer Aniston, a giggling mischievous cherub teasing Robin Williams, and another hanging out with Olympic champion snowboarder Shaun White.   These kids are cancer patients and their celebrity pals implore viewers to make donations to St. Jude’s Hospital.

Every year I’d come across them while channel surfing and think, “Thank God, we’re not one of those families. Thank God we don’t have to deal with that!”  That was until we were.

Our 11-year-old daughter had been complaining of headaches.   It’s hard to know with kids at that age whether you’re dealing with drama, the onset of hormones or something else entirely.   They don’t tell you everything.  It’s easy to miss a simple detail that could mean something huge. 

Ordinarily a talented and skilled athlete, I watched her decline on the soccer field and didn’t understand why.  My first thought was that she must have a concussion from heading the ball so I took her to a doctor.  After a physical exam, it was suggested that I fill her full of Advil and water because, “she’s at that age!” (Oh that hormonal age!)  I almost believed that too, I wanted so badly to believe that!  Because the last thing you think when you’re parenting a force of nature is that she could have cancer.

When she didn’t improve, I took her to a neurologist who made time for us at my insistence but acted like doing so was an imposition.  Jumping this hurdle got us orders for an MRI which resulted in a phone call no parent should ever get.

“Mrs. Dworkin, your daughter has a three centimeter tumor in her cerebellum; you’ll be checking her into the ICU tonight.”

It felt like all of the air was sucked out of the room.  In fact, I’m certain I stopped breathing for minute there.  Life came to a screeching halt.  I couldn’t believe what I was hearing! How could this be, my active, rough and tumble daughter has a brain tumor?  At the time she was one of two girls on her school’s flag football team!  She’s never had so much as an ear infection!  What on earth made me think that she would get a pass from being at risk for cancer?  The truth of the matter is that any kid could easily be the kids in those commercials and we adults really don’t acknowledge that.   One thing I would learn on the journey of parenting through cancer is how deeply we don’t acknowledge it.

She had brain surgery three days later.  Standing there in the hallway as the door to the surgery center shut behind her felt like being pushed off a cliff.    This was serious.  This was real.   There was no way to get out of this hell but walk through it.

A few days later, we learned the name of this monster that found itself inside her head.   It was called Medullablastoma.  It accounts for about 15 to 20% of all childhood brain tumors.  The fact that she’s an athlete worked in her favor.  Because the cerebellum controls balance and coordination, my husband and I could see signs that something was wrong quickly.  

Thirty-one rounds of radiation treatments would follow after she recovered from surgery and a 10-day hospital stay.  Once that was done, nine rounds of chemotherapy started.  Nine rounds may not sound like much but; this nine took almost a year to complete.  Our kitchen soon looked like a pharmacy and we learned about medications with impossibly long names.  I was driving back and forth to the hospital daily at first then later weekly often thinking, “What made me actually think we weren’t one of those families? What made me think we got a pass?”  For months my emotions vacillated around fear, despair and abject anger at myself for ever conceiving these thoughts.

Then I learned that as society we seem to all be marinating in this naiveté.   It took my daughter getting cancer for me to learn that a paltry 4 percent of the National Cancer Institute’s budget is used for funding childhood cancer research!  This is despite the fact that cancer kills more kids under 14 than asthma, cystic fibrosis, AIDS, and Juvenile Diabetes combined!  We should be mad as hell about this fact because regardless of whether you’re a parent or not, this is our future generation we’re talking about.   Future engineers, doctors, scientists, teachers, and community members who won’t be here should they lose their lives to cancer.

My daughter got lucky.  She got one of the few pediatric cancers with some research behind it.  Let’s just digest that thought for a second.  Imagine thinking that about your child or to any child you know.  While my child has finished treatment and is doing well, those diagnosed with Diffuse Intrinsic Pontine Giloma (DIPG), a tumor that infiltrates the brain stem, aren’t as lucky.  It is almost always fatal. It has hardly been researched and the treatment for it hasn’t changed in 30 years!

September is Childhood Cancer Awareness Month.  Please take the time to stand up and demand that our leaders increase the funding for childhood cancer research.  Email your representatives asking them to support this cause!   There are also groups supporting research efforts and children who are in the midst of a fight where you can make contributions.

Here are some suggestions:

St. Jude Children’s Research Hospital:  Founded by entertainer Danny Thomas, this treatment and research facility (the same one whose commercials I surfed by) sees patients regardless of their race, religion or ability to pay.

Lucile Packard Children’s Hospital:  I would be completely remiss if I did not mention the organization that saved my daughter’s life.  The research and care efforts taking place at Lucile Packard Children’s Hospital were invaluable to my family during my daughter’s treatment.

The Jessie Rees Foundation:  Inspired by 12-year-old Jessie Rees, this amazing foundation fulfills something Jessie asked of her parents during her 10-month fight with two brain tumors, to help every child fighting cancer to never ever give up!

Unravel Pediatric Cancer:  This organization is mobilizing change agents.  UPC provides the information, tools, and support to those who want to help create change by spreading awareness about the realities of pediatric cancer and the devastating impact from the lack of funding.

If you need one more reason to get involved, consider this: seventy-one is the average years of life lost when a child dies of cancer.  What would you do with seventy-one years?

Recent Posts by Kristine Dworkin

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