I posted in September about a group of dads who were cycling across the US to raise money to fund the treatments necessary to fight neuroblastoma, the rare pediatric cancer each of their young children is fighting. During their journey, and as they rode through Kansas City, I had the honor of meeting them and falling in love with each of their babies sight unseen. You can’t hear the stories of the tremendous faith these families have and not feel something. You can’t envision the weeks of aggressive, painful treatments their little ones are enduring and the financial struggle they all face because there simply aren’t enough kids suffering from neuroblastoma for the pharmaceutical companies to want to make money developing protocols and drugs for a cure … and not feel something. But this amazing group of parents who all met at Memorial Sloan Kettering Cancer Center in NYC where their children are being treated with an expensive, but promising anti-body protocol, have taken matters into their own hands and instead of just feeling something, they’re doing something. Actually, they’re doing all kinds of “something” to raise money and awareness of this fight.

One of the dads, Alec Oughton, whose daughter Grace Oughton is the namesake of the foundation I wrote about in September (www.loneliestroad.org) was so incredibly positive, but realistic, during the ride across the U.S. about the disease and how his family was coping and hoping. I remember leaving our local fire station after meeting the dads, thinking they must be made of a different fabric than most of us … a stronger, tougher resolve. I left that evening thinking I would surely want to die myself if it were my own child suffering like these children. I wondered if I would have the same kind of strength these families have had to dig deep to muster … day after day.

Sadly, on October 29, three-year-old Grace lost her battle with neuroblastoma. There are still days I cry on my way to work … or even now as I’m writing this post … my heart truly hurts for their family and I mourn for Grace. And remarkably, I never met her. Yet she … and Taylor and Kai and Jack … and so many others, have left an indelible mark on our hearts and compelled complete strangers, friends and family to take action.

So here’s my plea to all who read this … please donate and please pray. Every single dollar and every single prayer counts. Every donation goes toward developing more of the humanized antibody treatment that has shown such promise for many of the kids. There’s no national organization administering the fund-raising efforts … so no administrative costs. You can say every single dollar you gave went to finding the cure. Read more about the 3F8 treatment here. The good news is that the five dads and The Loneliest Road Campaign, along with several other initiatives created by the Band of Parents (www.bandofparents.org), a nonprofit organization created by parents of children with neuroblastoma, has raised more than $1.5 million, but so much more is needed to get clinical trials up and running.

To donate, go to www.loneliestroad.org and look for the little “Donate” button on the homepage. You can also visit www.bandofparents.org for more information and many other ways to give and get involved.

I’ll close this post with an excerpt from the latest post on Grace’s CarePage, written by her parents:

January 21, 2008

Dear Friends,

This site has been silent for a while now. It pales in comparison to the deafening silence that now fills our home…like a concert when the music stops, we long for an encore. The day that Grace Lindsay died, so much of what was musical and beautiful in our lives ceased to exist. The “music” died. For so long Crystal and I wished only that she would be at peace…be through suffering. We were sure that we were stronger than her and that we would be “okay” if she were healed in the arms of God. Now I am not so sure. I think she was the stronger one. I think this because now we are here without her…weak, frail, and longing for healing. We would gladly give all that we have and all that we are to see her fighting again, inspiring and giving hope to so many, including us. We want hope back, but we really want her back.

It is ridiculous, of course, to ask for that. Not only because it is impossible, but because, if possible, our princess would not ever want to leave a place of such peace and perfection to return to an earth filled with pain and sorrow….even to be with us. So, we don’t ask for that. We simply ask for peace and wisdom, neither of which has come to us from a burning bush or lightning bolt yet….but we are still hoping …”

The Oughtons