9.30.2013

Growing Gold (Wrapping Up Childhood Cancer Awareness Month)


It is the end of September and National Childhood Cancer Awareness month is drawing to a close. In the past month, about 210 children have died from this disease.

For 29 days now I have wrestled greatly with what to say about this topic of awareness. I have read many posts from other cancer moms...they are sad, angry, informative...all written in an effort to illicit action. I dwell a good bit on how to turn gold into pink. I think about how the marketing juggernaut that is Komen was birthed. I dream about what the world would look like if proceeds from gold merchandise went to research or if athletes wore gold ribbons or if the end cap at every Target was full of gold products. What if gold and childhood cancer were inextricably linked?

Please forgive us cancer moms if we come across too strong. Imagine for a moment that this is your child...because it could be. Like many diseases, childhood cancer is on the rise. So, pick any one of your kids and think for a moment about how it would feel if you heard those words, "Your child has cancer."  On March 15, 2012, I did. Imagine the days in the hospital watching your baby struggle as life passes by outside. The painful surgeries. The poisonous chemo. The side effects that will last a lifetime...if they are one of the lucky few who get a lifetime. Mouth sores so awful that only morphine brings relief. Answering questions about mortality to a child who should be worried about homework and sleepovers. Watching a little one being bolted down to a radiation table. Vomit buckets stationed in every room of the house. Holding a child as they cry themselves to sleep because they are hurting and tired and sad. Serious life-long health issues resulting from the "cure" itself. And because there are only a few chemotherapy options for most childhood cancers and only one new one has been developed in two decades, think for a moment about hearing those words heard by many cancer parents, "We have run out of options for your child. There is nothing else we can do." Imagine burying your baby.

Yes, we cancer mamas are fighting mad. We are upset that more kids die of cancer than any other disease. We are angry that only 4% of the government's cancer budget goes to children. And we are disgusted by the lack of funding and attention given to these suffering children. Kids are dying and many days, it feels as though no one cares.

But how do we get the world to notice?  How do we grow gold? I am searching for answers.  It does appear that small progress has been made. The rise of social media has created an environment where it is much easier to get the word out and to allow people to truly see what these kids go through. I worry some because now there are so many Facebook prayer pages...will the photos of bald kids hooked up to tubes eventually lose their effect because people have seen so many? Will the shock value have run its course? Maybe not, but we do tend to numb after repeated exposure.

We are a busy and selfish world and so we don't usually fight for something until it affects us directly. I am guilty of this. I had no idea of the horrors of childhood cancer, no understanding of the heartache these families were facing. And the reality is that we simply cannot dive fully into every cause, there are just too many. The hurt is all similar...it can be beautiful African babies with swollen bellies and empty eyes, Indian people living in the slums, a special needs child or the fear in the face of those who have just lived through a natural disaster. It is not what we were made for, yet there is pain and suffering everywhere and it is not exclusive to the childhood cancer community.

So where does that leave us? Do we give up because there is simply too much hurt?  Absolutely not. We should all pray that God breaks our heart for something that breaks His. I thought our family's "thing" would be orphans. But now we have an additional passion added to our list.  Once your eyes have been opened you cannot look away and pretend it didn't happen. Whatever the cause. We have seen and felt firsthand the heartbreak of childhood cancer, we have been given a miracle and now we must act.  The answer for all of us though - the way to make this world a better place, is that we must all allow ourselves to step out of "me" and into heartbreak. We need to force ourselves to look at the pictures that make our souls ache and read the stories that leave us weeping. It will be uncomfortable, it will hurt. We cannot look away. Our family is going to fight like hell for these kids and we will be humbled and grateful to anyone who walks along with us. You may not be called to this specific cause, and we understand that...but please...let your heart break for something.

As we wrap up September, there is an army of cancer families poised and ready to continue the battle. Progress is slow, but forward movement is happening. The most important piece of the battle-plan right now is financial.  Money is crucial and this war cannot be won without it.  It is extremely important to give to a childhood cancer specific group because the real solutions are going to come from smaller, more nimble, private organizations. If you can join our fight, we would be so grateful. If not, I'm certain there is no more effective group of fighters than a legion of angry mamas.

I feel this September was productive. My hope is that now between 2013-2014, we can continue to build on this progress, gaining momentum rather than stalling out until next year. We must continue to push, to inform, to act and to drive change. We must fight for these kids who cannot fight for themselves. We must find answers before more children have to suffer.

To join the fight, please check out 








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