It's Not About the Why, It's About The Win

To Answer Your Question: Yes, There Is Something You Can Do To Help

February 26, 2012 at 2:41 pm | Posted in 02/2012 | 3 Comments

Click here to help fund childhood cancer research with a donation to St. Baldrick’s.

If I had a dollar for every time someone asked me, “What can we do?” I’d be living the high life right now. It’s such a simple question, yet I have always struggled to find a simple answer.

Not anymore. After nearly three years since Andrew’s leukemia diagnosis and with less than five months of treatment to go, my perspective has shifted. I used to think of that question in terms of what we (as in my family) might need, and an answer was never clear to me. Now, I think of it in terms of what WE (as in the larger community of childhood cancer) need. And when I look at it that way, the answer couldn’t be more clear. So if you’re still asking what you can do to help, I have a simple 3-step answer for you. KNOW IT – SPREAD IT – GIVE TO IT.

KNOW IT

First, KNOW the facts about childhood cancer. Let them alarm you as they should. Here are just a few of what I think are the most critical:

• In the U.S., 46 kids are diagnosed with cancer every day. Childhood cancer is not rare, and it does not discriminate. It’s real. It could happen to your child, grandchild, niece, or nephew. Believe me, the things you think will never happen sometimes hit you like a ton of bricks.
• One in five children diagnosed with cancer will not survive. This is not just a statistic, it’s personal for us. In the last six months, two of our friends have been lost to the evil that is childhood leukemia. The pain is tangible – you can see it in the air around these families, you can feel it in depths of your soul you never knew you had. One in five, think about it.
• According to a recently released study, 73% of childhood cancer survivors have at least one chronic health problem and 42% encounter a very severe or fatal health issue as a result of their treatment. Heart damage, lung damage, and secondary cancers steal the lives of many survivors within 20 years of their original diagnosis – a statistic not factored into the published survival rates. Other lifelong problems faced by many survivors include bone damage, chronic pain, infertility, cognitive impairment, growth deficits, and hearing loss, just for starters.
• Research specifically for childhood cancer is grossly underfunded. Let me say that again: grossly underfunded. And when I say “grossly” I mean it as in “extremely” and as in “it’s so gross it makes me sick to my stomach.” Although the years of life lost to childhood cancer rival that of many adult cancers, the federally funded National Cancer Institute (NCI) gives only 4% of its budget to pediatric cancers. The American Cancer Society gives less than 1% of their funds to childhood cancer research.
• As the national budget crisis reduces the NCI’s budget, fewer dollars are available for distribution across the different cancer types. That’s certainly been true for childhood cancers, but not for all types of cancer – although the NCI’s overall budget has decreased, it’s been able to increase the amount of money given to breast and prostate cancer research over the last three years while funds for childhood cancer research continue to decline.

SPREAD IT

Now you know some basic facts about kid’s cancer. Don’t let that knowledge just sit in your psyche, do something with it. SPREAD THE WORD. Awareness = Funding = Research = Cure. It’s a simple formula, really. It seems like people don’t want to think about kid’s cancer, and they don’t really want to talk about it either. It’s too heartbreaking, I guess, the thought of children suffering and dying. Yet that’s exactly why we need to talk about it — because so many children are suffering and dying. Please think about it, and please talk about it. Please make the battles of these young cancer warriors mean something.

GIVE TO IT

Now on to the final step, it’s the easiest one really. GIVE TO THE KIDS. You already know federally funded programs don’t consider our kids a high priority, but many other groups do. One of these groups is St. Baldrick’s, a leading funder of childhood cancer research grants. Since 2000, more than 189,660 volunteers — including over 17,200 women — have shaved their heads in solidarity with children with cancer at events in dozens of countries and every U.S. state. Thanks to generous friends and family, these shavees have raised over $117 million for life-saving research. This year, we’re honored to once again be involved with the St. Baldrick’s event put on by my niece Jaimie’s friend Lyle, who lost his young brother Zachary to brain cancer in 2007. Mike is a shavee, and I’m working with Jaimie at the registration table. (Translation: I’m doing whatever Jaimie tells me to do at the registration table.) The event is March 3^rd at the Colorado School of Mines, where Jaimie and Lyle are both freshmen. Click to visit the event page.

Why we’re doing this, and why we’re asking you to help

I often say that Andrew’s 3+ year treatment plan is a journey, with a cured young man waiting for us at the end. Our path is paved by the doctors, researchers, and other heroes who dedicate their lives to making a difference for all kids with cancer. We’re able to stay the course on this bumpy road because of the support from our families, friends, and other cancer families we’ve connected with along the way. But the most important aspects of our journey are the sparkling lights that guide our way. Daniel’s light. Jonathan’s light. Zachary’s light. The greater purpose in all this is to honor the lives and the lights of all the “one in fives” – the children who are not statistics at all, but who are sons, brothers, daughters, and sisters stolen from this world far too soon. The sacrifice these bright lights have made is why we all need to KNOW IT, SPREAD IT, and GIVE TO IT.

Please help however you can. Every dollar makes a difference. Just click here and give, it’s that simple.

No Words

February 17, 2012 at 6:30 pm | Posted in 02/2012 | 3 Comments

Daniel the Brave’s fight is over. I have no words. I have no words because no words exist that could ever help us make sense of this. Not ever. It’s all just so damn wrong. Wrong. Wrong. WRONG. The canned condolences, while certainly sincere, are beyond inadequate.

“I’m so sorry.” Sorry? That doesn’t even touch how I’m feeling.

“Time will ease the pain.” Maybe so, but I know that doesn’t really help right now.

“At least he’s not suffering anymore.” He’s just a little boy, he should have never ever suffered through this in the first damn place.

“He was so brave and strong.” Talking about him in the past tense is just not right, not right at all.

“Let me know what I can do for you.” I would do anything to carry your pain for you, even for a minute. But I know what you really need is something I cannot give you. I can’t turn back the clock. I can’t change this for you, as much as I want to.

To Leukemia – As Andrew said early on in his battle, “If cancer were a person I’d rip its head off.” Oh, yes, I would gladly rip your head off, just for starters. You’ve hurt too many people, too many children. Get out, leukemia, leave our kids alone.

To Daniel – You showed the world how important it is to find the strength to PLAY. You showed the world how brave one little boy can be. Our hearts are forever broken, but our lives are forever richer for knowing you.

To Jeri, Ruben, and the entire Jones/Gomez family – Thank you for sharing Daniel with us. We are crying with you, screaming with you, and hoping for peace for all of you.

To Jeri – While this awful disease is what brought us together, our friendship is stronger than leukemia. I am here for you. Always.