Sunday, September 13, 2015

Blue About Gold

September is Childhood Cancer Awareness Month. Ashley was a healthy child just like yours for six years before her leukemia diagnosis. If you think that Childhood Cancer can’t happen to your child or your family you are sadly mistaken. Childhood Cancer is not rare. Help spread awareness. Go Gold!

These are not the actual words of any one individual. It is a composite of many statements I have seen in my news feeds on Facebook and Twitter, shouted in rallies, and mailed to me in fundraising letters. Names have been changed. Words have been changed.  I re-worked it but I didn't write it. I wouldn't write it.

The rest of this writing is mine. I am addressing this to parents of healthy kids. Your kid doesn't have cancer. None of your kids ever had cancer. You are not a bereaved mom or dad. You are a regular parent doing more or less the best you can.

I'm giving you a heads up in case you see something like this in your newsfeed or inbox or your snail mail. I'm showing you this now because you might hear something similar on TV. Childhood cancer is making the rounds.

The Childhood Cancer community might seem like one big cohesive group. The truth is that childhood cancer advocacy is made up of individuals. As such, I often agree with other voices in this community. But sometimes I disagree.

This is one of those disagreeing times. There are a lot more days in September. If I didn't say something now, I’d be losing my mind until October, when some of the more vocal childhood cancer people start begrudging the breast cancer people their success.

The statement above is hitting below the belt.

Don't go there. Don't take it to heart.

If you want to join my family in Times Square this September, you are invited. They're lighting it gold for September.

If you want to wear a yellow shirt or a gold ribbon, I'd be thrilled. If you take a moment to remember Jacob or kids like him, that means a lot. You can make a donation here and feel good about kids with cancer getting the best possible care.

If you want to organize a fundraiser with your kids' school or at work, let us know. We can help you get started.

If you want to help kids with cancer by all means do so.

It is possible - but not probable - that your child may get cancer. It is true that Jacob was healthy until he wasn't. No one can say which kid will get cancer.

Childhood cancer is not one big disease. It's actually a lot of different cancers under an umbrella. "Find a cure for childhood cancer" sounds oddly inaccurate to me. Finding cures for medulloblastoma, ALL, Wilm's tumor and neuroblastoma is more like it.

The chances of Jacob being diagnosed with his particular cancer type were approximately one  in 4,500. When you factor in his age at diagnosis, the unusual presentation, and other features, he may have been the only child in the world with his exact diagnosis at that exact time.

Numbers are numbers until it hits home. Once Jacob was diagnosed, the situation was 100 percent.

I'm not going to get into numbers for childhood cancer in general. Even one is too many.

But the odds are still overwhelmingly in your favor. The child you wished for, the one who is toddling around, the one starting school, the one starting college is probably not going to be diagnosed with childhood cancer.

Most likely, when all is said and done, if you're reading this now, cancer is going to happen to someone else's kid.

So if you want to help - a donation, a fundraiser - hell, a thumbs up - do it altruistically, or because of some other kid, my kid, me, or an idea. People help other people all the time.

You have my permission to put fear about childhood cancer touching your children out of your mind. It is unfair and unnecessary to ask you to go there.

Here's the thing. I'm different from you. My child had cancer. But I'm also the same.

I have two other kids. These kids are healthy. They are teenagers. They've made it this far. They're both doing great. There are no guarantees. But I am so hopeful.

When I see a post or promotion asking for my help and there is urgency because my child might be next then I know I am being manipulated in the most egregious way. I received a snail mail from St. Jude to this effect. I took the free address labels and ripped up the letter.

I am a childhood cancer activist. But I am fair. I won't use Jacob's memory to scare and coerce people with healthy kids.

My yellow ribbon is borne out of heartache and loss. That said, my September gold comes with a responsibility and positive mission.  We all have choices about what to do with our portion of that gold ribbon. Here's what I'm doing with mine.

You can join Jeremy and I along with Hope & Heroes in Times Square, which is lighting gold in honor of Childhood Cancer Awareness Month on September 17th.

Camp Sunshine invites families touched by Childhood Cancer and bereaved families to camp, for fun, fellowship and support. Donate here.

I’m really inspired by the work  - and fashion - Bravehoods is engaged in.

This image is a thorn in my side and is making the rounds.

Awareness, targeted research, and funding save lives. Sour grapes about breast cancer success doesn’t.

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