I spent today anxiously checking Facebook for news regarding biopsy results of one of the osteosarcoma kids we now follow. She was diagnosed shortly after Bailey, but her cancer did not respond extremely well to the two initial chemos...or to the several given after the first two didn't work. Now the beast is raging inside of this sweet eight year old girl and they are grasping for hope, praying for a miracle. I wish this was an unusual morning, checking in on the one rare sick child. Sadly, it is our new normal. Ever since we were thrust into this world, our eyes have been opened to a reality we never knew existed. A horrific world, where kids walk through tremendous pain, fear, and physical suffering...a world most adults cannot even manage to think about because it is just too ugly...yet these kids must live it every day.
When you have a child with cancer, much of your time is spent feeling helpless. As a parent, we are there to guide our kids, to walk them through life, to keep them safe. With cancer you feel so completely out of control...relying only on the terrifying combination of what each scan reveals, the advice of doctors and the hope that this particular mutation responds to the drug options that are available. It feels as if everything is upside down and there is absolutely nothing you can do...it is terrifying. To watch your child hurt and not be able to fix it, it changes you in the depths of your soul.
The other shock comes when you begin to better understand the data behind childhood cancer. Up until the point when Bailey was diagnosed, I thought it was fairly beatable. I had always heard "good" things about leukemia and how much progress had been made. What I didn't realize is that other than a few types of leukemia, childhood cancer is extremely underfunded and we really haven't made much progress at all in most cancers in over two decades. Childhood cancers are very different than adult cancers and we are in desperate need of new research, drugs and cures that are not completely life altering. If you aren't one of the fortunate kids who catch it early and whose cancer happens to respond to one or two of the known drugs, your hope quickly vanishes and you are left to cling to clinical trials and miracles. And almost all of those who do survive must deal with some combination of life-long side effects...hearing loss, heart damage, infertility, cognitive damage, limb loss...these are the "lucky" kids.
There are so many awful things in this broken world. I am not naive enough to think that childhood cancer trumps them all. The difference is, that while there are many tragedies we cannot avoid...natural disasters, crazy people who snap, accidents...this beast of childhood cancer is actually something we could defeat. The building of awareness can lead to funding which will lead to research...and do you know what comes after research? Hope. Healing. Happiness for families who would have otherwise been torn apart by grief. Kids living and getting to be kids.
I know sometimes it must be tiresome to visit this site or my Facebook page or anywhere that I am posting about all of this awful information. Its hard to look at. But now that our family knows, we must act, because we really can affect change and it is impossible to un-see. We can help these kids. We pray that you are willing to step into the ugly battle with us, to roll up your sleeves and get down to the business of fighting this monster so that kids may have their lives back. Our first big push for this year will be the Rally Foundation half-marathon in October. Tomorrow I will be posting information on both how to run as part of our team as well has how to donate. We would love to have a big group running, but if that simply isn't your thing, please prayerfully consider giving to this great organization.
This won't be the last time I ask and I will apologize in advance for my persistence. Please look past me and see these warrior kids facing battles and making decisions far beyond the scope of what their little hearts should have to face.
In a very hard and broken world, this really is an area where we can make a difference. We can ensure that kids and parents do not have to suffer in this way. The government can't help because it is too large and cumbersome. The pharmaceutical companies will not come to our aid unless enticed because there is no profit to be made. But as family and friends, we CAN fight the battle for these kids and truly make things better.
Throughout this journey, I have committed to being open and authentic. This is my heart tonight. I am growing weary of watching kids hurt and parents ache. Please prayerfully consider joining us in this fight. Tomorrow, I will post the specifics about how you can run with us...
Humbly,
Tiffany
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