|Alex in a Halloween parade 12 years ago.|
Recently, when I was in Los Angeles to attend the L.A. Loves Alex's Lemonade
culinary event, my wife Liz reminded me of something our daughter Alex had said quite some time ago. In a discussion with her older brother Patrick, Alex asked him if he believed in miracles. Patrick, always the thinker (he's a sophomore at Harvard!), took pause, and instead of awaiting his reply, Alex simply piped in and said -- "I do, I mean I could wake up one day and my cancer could be gone, that would be a miracle."
Alex was right, she had battled cancer since before the age of one, and at the time of her death in 2004, she hadn't been cancer-free since diagnosis; had her cancer disappeared, it certainly would have been a miracle. But I'm not here to tell you about a miracle that saved my daughter's life; instead of I'm here to tell you about the miracle that was her life, and how her 8 ½ years of life have left an enduring impact on the lives of other children battling cancers.
Many of you have heard the story of Alex
before, how she had surgery on her first birthday that left her without feeling in her legs, and how she willed herself to walk anyway; some would call that a miracle. You may have also heard that after receiving a treatment that made her feel better, Alex became determined to help doctors on their way to cures through a front yard lemonade stand. She would raise more than $1 million in her lifetime; that could be considered a miracle too. For me, the true miracle is that what Alex started in our front yard continues to make a difference today, nearly ten years after she lost her own life to the disease. Through Alex's determination to help others, she got her miracle, in the form of being a part of the cures for others.
You may recall the story of Edie Gilger, featured on CBS Sunday Morning earlier this year
. Edie, like Alex, was diagnosed with stage 4 neuroblastoma before she was a year old. Despite aggressive treatment, Edie's cancer persisted and she became a candidate for a clinical trial for children harboring a specific cancer causing gene, anaplastic lymphoma kinase (ALK). The trial tested
the effectiveness of the drug crizotinib, already being used to treat lung cancer in adults to literally turn the ALK gene off, stopping the fuel for the cancer. If all goes as planned, the cancer disappears. For Edie, that is exactly what happened -- Edie now has no trace of the cancer.
For Edie, through research that was funded by the Foundation my daughter started (and other sources too), her miracle happened: She woke up one day and her cancer was gone.
Of course this treatment works for only a small number of children, with certain types of cancer; but for those children and their parents, it has made all the difference. As we ready ourselves to turn the page on yet another year, the words of my daughter reverberate in my mind; miracles are possible through hard work and determination. We are making progress on the way to finding better treatments and cures for all kids with cancer, but we have such a long way to go. Alex knew how powerful hope was, and that when there is reason, hope is a powerful thing. We shouldn't stand in its way. She believed that she would get her miracle, and although it wasn't the cure she had dreamed of for herself, her vision of helping others has been fulfilled.
I hope wherever you are, and whatever you did this year to help in the fight against childhood cancer, that you will continue that for years to come, day in and day out. After all, as Albert Einstein said:
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle."Originally posted Jay Scott's Huffington Post blog on Oct. 25.