There’s nothing else we can do…

September is Childhood Cancer Awareness Month

“There’s nothing else we can do…”   These words are absolutely devastating to every parent of a child with cancer.   People often tell you how brave or strong you are while your child is undergoing treatment for cancer.  We’re not.  Being brave is willfully going into a situation that is either dangerous or induces fear for one reason or another.  No parent decides to let their child go into battle with cancer.  It’s something that is thrust upon us without warning and certainly without any willingness on our part.  

When you first hear the words your child has cancer, you think that is the worst thing you can ever hear.  For most, up until that point in their lives, it most likely is the most life-altering sentence you’ve heard.  Your world is turned completely upside down.  A million thoughts go through your head.  Disbelief, shock, fear, anger, sadness, confusion…and again, disbelief.  All of that happens in the span of about 5 minutes.  I’d like to say I knew what I was thinking for the weeks following Emily’s diagnosis, but I don’t really recall.  

I remember lots of doctors visits and tests and consultations.  I remember hearing that it was confirmed it was cancer and was handed a binder that appeared to be 2000 pages thick, telling us what to expect, how things would proceed and a bunch of other information that I read about 10 times without really comprehending a bit of it.  My mind was still trying to wrap itself around the fact that my baby girl was sick, something was threatening her life, and there wasn’t a thing I could do.  There was no one I could hunt down and beat the crap out of.  We as parents were helpless.  

I’m not sure if it was better or worse for Lori.  As a nurse, she understood the language, she knew what the doctor’s statements were really saying between the lines, and she could read that stack of information and comprehend what it all meant.  I assume it meant that she wasn’t as confused as I was… but that probably doesn’t mean it was better.  Sometimes ignorance truly is bliss.  As far as I knew, Emily had cancer.. okay, then let’s get treatments going… she’ll be fine… right?  Kids respond better, they’re strong and resilient. 

Treatments start almost immediately.  You’ve calmed down somewhat by now.  There’s a plan, there’s a treatment, and things are moving forward.  You’ve read all that statistics and though they aren’t great, you have hope.  My baby is going to high school, she’s graduating, she’s going college, she’s going to get married, I’m going to have my daddy-daughter dance.  We just need to get through all this chemo, these surgeries, these endless scans and tests.

By now you’re already looking at the world differently.  You walk the halls of the hospital and you see so many other families and children.  Some of them have been here for much longer and some have just arrived, having just heard their child has cancer a few days ago.  You look in the other parent’s eyes as you see that they understand.  There exists a caring and empathy that is lacking in people you see outside of the hospital, including those who are your family and closest friends.

Outside of the hospital, almost everything you thought was important now seems trivial.  You look and listen to people with a certain disdain.  You start to realize how often people complain about minor things in life.  You want to scream at the world and tell them to stop with their pettiness, stop worrying about these trivial issues… there are children dying!  The sad reality is, people don’t want to hear about children dying.  Many don’t want to hear about your child either.

You don’t have time to worry about what others think, however.  You have a child that needs you.  You still have your hopes and dreams for your child, though as the tests come back, you start to learn how to read the doctors face and tone as he speaks to you.  What was once a voice of optimism, slowly turns to a more clinical and direct approach.  Things aren’t going well, they know it, you know it as well, but you’re not about to admit it to yourself.  The next treatment will work…my baby-girl will dance with me.

Then that day comes.  You’ve dreaded it and hoped to avoid it forever.  There’s that one more scan.  You can tell by the way the doctor approaches you that he doesn’t have good news.  If it was, he’d be looking us in the eyes, smiling as he approached us.  He’s got that serious clinical look.  He’s thought about what he’s going to say and how.  Even though you know what he’s going to say, even though you’ve thought you’ve prepared yourself for this scenario, you’re no more prepared than you were that very first day you heard your child had cancer.  There’s nothing else we can do…

In that very moment, all your hopes and dreams, whatever optimism you had left, comes crashing down to a reality that crushes your soul.  You’re not prepared for this… how can you be?  Things aren’t supposed to be this way, this isn’t right, this isn’t fair. You’ve had defeats before in life, things that haven’t gone your way.  This, however… all those feelings of helplessness, frustration, sadness and anger… they all come rushing forward with a vengeance to levels you never thought existed.

From that moment on you live in a world of uncertainty.  You’re going to lose your baby… do you have a few months, weeks… days?  Thoughts race through your head constantly about what they’ll never get to do again or even for the first time.  You realize that without knowing it, you’ve already experienced your last time together for certain holidays… birthdays.  There will be no high school, no marriage, no daddy-daughter dance.

It’s been almost 5 years (Edit: almost 10 today) since we’ve heard those words, over 4 since we said goodbye to Emily.  If you think it gets easier, it doesn’t.  Lori can tell you that I was tearing up as I write this, crying because I miss my baby girl.

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People say we’re strong because we still fight for awareness and funding for research.  Just as we weren’t brave, we’re not strong either.  We get up, go to work, and go on with life not because we’re strong, but because we have to.  Our boys need us and though it’s not what we envisioned, life goes on and so must we.

The reason we fight for awareness and funding is because we don’t want another parent to go through what we did, nor do we want a single child to go through the pain and suffering that cancer causes.  We are doing this for all those parents who are blissfully going through life today, who unknowingly will wake up tomorrow and begin a heart-breaking journey of having a child with cancer.   It has been said over and over… we didn’t think we’d ever have a child with cancer… until we did.

The good news is, there’s still something that can be done.  With enough pressure, with enough noise from parents, we as a people can devote the resources needed to finally make some progress against the disease that is the number one killer of our children.   So raise your voices and make funding for childhood cancer research a top priority of this nation.  Is there really anything more important than your children or your grandchildren?  If the answer is yes, then shame on you… if it’s no, then why aren’t our Senator’s and Representatives hearing that from you?

You can contact your Senator at this link http://www.senate.gov/senators/contact and your Representative at http://www.house.gov/representatives/find.  Why not take 5 minutes and let them know that you want childhood cancer research to be a priority?

“Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere and yet, as they flicker and dance to remain alive, their brilliance challenges the darkness and dazzles those of us who watch their light”

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