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Butterfly Blog

Getting Angry with Cancer and the Lack of Funding for our Kids

The world lost an incredible young girl this week, and her parting makes the world a less bright and happy place.

When I met Beecher, the founder and director of Lucy's Love Bus, I was, quite simply, bowled over by her. I was amazed at her capacity for goodness despite the pain she has endured. I was grateful for her acknowledging the fact that speaking with her could be, to some cancer parents, difficult, as she has endured and continues to endure every parent's greatest fear--the loss of her beautiful child. I was awestruck at her ability to live life, and to do something so GOOD with her life, all in the name of her daughter, Lucy. We don't know the path our lives will take us, and, as cancer parents, we know better than almost anyone that we can be forced to walk dark, frightening, soul-rending paths that we never dreamed we would travel. I went home after meeting Beecher and thought that, if my path as a parent were to mimic hers, I hoped I could travel that path with even a fraction of the grace and courage with which Beecher has traveled hers.

I only met the little girl who passed away this week two times. I met her mother the same number of times, plus one very brief hug in a lobby. With those meetings, I walked away feeling the same as I did when I met Beecher. I was dumbfounded by the little girl's mother's poise and resolve in the face of a horrific situation, and I was stunned at her ability to still talk to me about what my own son was going through when, and I know this, her daughter's struggle and trials were far more severe and dire than my child's. Most of all, I was humbled by her daughter's spirit. She was an incredible girl--when her peers were in school, she was in the hospital. When her family was back home, she was in a strange hospital in a new state. When I met her, she was a kind, sweet child who laughed, who told me and a hospital volunteer stories about her dog, and who exhibited a fierce and almost physical will to live and, even more, thrive in the situation she found herself. She was, simply, a stunning child.

What is stunning to me is that this incredible young child died. She had battled cancer and relapses for many years, and I thought she would live, and I thought she would pull through this last illness. She touched so many people and so many lives in her short time on Earth, and I had thought she would continue to do so for many, many, many years to come. I have no doubt that her story will continue to impact all people who ever learn of it, but I thought she would be able to tell her story herself. She did not die of her cancer, but, rather, an infection. The fact is, though, even though the illness that took her was not cancer, it was cancer's fault. After years of battling the beast, her body was too tired to keep on keeping on.

I am devastated for this little girl, for her family, friends, and, most of all, for her mother. I am frightened, simply because my son has cancer and it is always frightening to see children die of cancer. Most of all, I am incredibly angry. I'm angry because, the fact is, our country failed her, and our country fails seven children like her every day. I'm angry because the best we can offer our children is years of conventional chemotherapy and a hope that, by the time those side effects catch up with them, there will be treatments in place to deal with those. I'm angry that, when those treatments fail, the best we can offer in many cases is more of the same, and in higher doses. I'm angry because my friends and I are holding a bake sale to raise money for pediatric cancer research. We should be holding a bake sale for a new playground or soccer uniforms, or something equally banal and pedestrian, not for cancer research.

We live in the richest country in the world, and yet our children to die of a disease that has been around since the beginning of mankind, and we still don't know why some children get it. We have space probes sending pictures back from beneath Jupiter's atmosphere right now, and still the best we can do for our children is years of poisonous chemotherapy, along with crossed fingers that they don't contract a serious illness while taking it. We have invented weapons of war that are straight out of Star Wars, and yet some cure rates for pediatric cancers haven't changed in decades. We spend "$25 BILLION dollars annually on maintaining unused or vacant federal properties" (, and we give our children pennies to fund research for these diseases.

I call bullshit. Yes, immunotherapy shows promise. Yes, we're moving slowly in the right direction. You know what? That's the problem--it's too slow. It's too slow for the children who died this week, who died today, who will die tomorrow. It's too slow because we're not funding research properly. $2000 buys one week of research. $250,000 will buy two years of research. That is NOTHING--that money is a drop in the bucket for our government. And yet, our children get next to nothing. Charity begins at home, but rather than really fund research to save our children, our government gives billions upon billions of dollars in aid to countries that hate us and wish us ill.

Can you imagine if our children were afforded just a portion of that? Just a tiny, tiny fraction? Can you imagine what our children's doctors could do with that money? Now imagine if we had someone in a political office who actually cared, and to whom childhood cancer was a real issue meant to be tackled and solved, and not simply a sad fact. Imagine if the Clintons or the Koch brothers threw their support behind our children. Imagine if our voices were heard as loudly and clearly as the voices of big industries--imagine the bailouts for our children, then.

Above all, I'm angry that, in our beautiful, brilliant, incredible nation, we allow so many children to suffer. The little girl who died this week was full of bright, shining potential. So was the little boy from Florida who died earlier this year. So was the little girl from Maine who died earlier this year. So was the little girl from Tennessee who died last month. So is every child who dies of cancer. Each of these children had the potential to change the world. They were robbed of that opportunity, and their parents were robbed of the opportunity to watch that happen. We need to do so much more, and I'm so angry.

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