Thursday, September 13, 2012

Day 13: Salt and Pepper.

There is a pediatric brain tumor called a Diffuse Intrinsic Pontine Glioma or DIPG. It is a nasty SOB, infiltrating the brain stem, mixing itself like salt and pepper with healthy brain cells. I am not an expert, but I've heard enough stories to know that DIPG is just about as bad as you can get. If the devil were cancer, it would be DIPG. 

There is no prognosis for DIPG--no one survives, not for long.

It's all very doomsday, isn't it? This talk of no survivors, of children with cancer and of dead children. The drama of evil and darkness and death. There is no sugar coating it: cancer maims and kills. Whether in a child or an adult, cancer is disgusting.

When a child is diagnosed with cancer, the world seems completely upended. Children are slices of perfection--beautiful bodies bursting with potential. Children have not spent a lifetime eating badly or working around hazardous materials or smoking cigarettes. Children have not had lifetimes.

Cancer should not be their disease.

But it is for 46 children, each and everyday. 

This month, as I watch the childhood cancer community rally for support and for Going Gold; I've noticed some of the anger creeping in. Being in the cancer community is like being part of cancer itself. It is like that brain tumor: salt and pepper; the good and the bad are mixed, impossible to separate.  I've seen advocates bash "Going Pink" for breast cancer; hate on AIDS research dollars and essentially scare and threaten parents with the prospect of childhood cancer. I've watched people fight over which causes are worthy. And it is not because these other causes are not worthy: it is because our children are at stake; our babies and we are scared. 

I've also watched families unite together to share their stories. I've received guest posts from all around the world--mothers and fathers who want to share their child's story. There are grieving parents who are angry. There are parents, like Mike and I, who are celebrating positive MRIs and looking to the future. There are families struggling while one of their children endures treatment.  There is salt and there is pepper: the good and the bad are mixed in some sort of inspirational soup.

But one thing unites all of us cancer parents:

If we could erase our child's cancer, make it so it never happened, we would. 

And for me, I'd never speak of cancer again. There would still be 46 children a day. But I would trade my awareness for my daughter's health, in a heart beat.

But this, of course, is impossible. 

Every cancer mom will tell you the same. We are not heroes. We are not taking one for the team or jumping in front of bullets for anyone. We are nothing of the sort. We've had no choice in the matter; we've had no say. 

We are just parents on the defensive fighting for our children, all of our children. We cannot leave each other behind--because no one else has our backs.  We know that no matter how many times we click our heels or pray or beg or delude ourselves--cancer is in our lives. It is like that brain tumor;  salt and pepper. 

We are aware. The awareness courses through our veins. It makes our hands tingle. We inhale it with every breath. And we want you to be aware too. We don't wish childhood cancer on our worst enemy, but we do wish, you could walk a mile in our shoes and know how unheroic it feels to fight for your child's life. We wish you could, for one minute, feel the fatigue in our bones. We wish you could see our broken hearts. We wish that you would not just know that cancer exists; but feel it, for a moment. We wish you would not roll your eyes and think: oh another cancer post. 

Because cancer is a part of us--we are salt and pepper. 

And then you would know why we are angry, sad, joyous, strong, weak, whole and broken all at once. 

We cannot change that our children have cancer. But, we can beg you to help us find a cure. 


  1. Beautiful post,Trish. I wish I could make it all go away for you. Thank you for continuing to help us all be more aware.

  2. I see your words in every parents eyes....every weekend. Thank you for sharing them.

  3. OMG, I cannot imagine, truly I can't and I can't say I would want to know even for a second what it feels like, but I can say that I give to any and all cancer charity's I can! It's ugly and scary and this sums it up probably the best I have ever read, and it made me just sob!! Thank you for sharing and trying to convey your world. My heart aches for you and all the families that have to endure cancer!

  4. Great post. Sending some cyber hugs to all the families as well as hope and prayers.