There is a ubiquitous poem that hangs in almost every oncologist's office. "What Cancer Cannot Do," author unknown. I have grown to strongly dislike this poem. Almost to the level of hate; however this is a very strong word. This poem first struck me while waiting to have my then two-year-old daughter's vital signs taken at her oncologist's office. There it was, framed, hanging on the wall. Conspicuous in its proclamation. I read it each and every time we had to take Alexis to her doctor while watching as the small blood pressure cuff performed what Alexis called an "arm hug." At first, it had no impact upon me. It made sense. The poem is about all that cancer cannot do. It cannot "shatter hope," "it cannot kill friendship." Etc., etc. It trumpets all that cancer cannot do.
We had hope despite the ominous diagnosis of DIPG, an inoperable brain tumor with a less than one percent overall survival rate. I had hope. Hope, with a capital H filled me until well into Alexis' long 33-month journey. Hope was the little girl wearing a tutu in the hospital as she danced around the halls with a chemo drip hanging from her gaunt arms. Hope was finishing each radiation treatment and ticking off another line on the calendar bringing us one day closer to completion. Hope were the nurses, some of the most amazing people on the face of the earth. Hope was the outpouring of support for Alexis and her journey from all corners of the globe. Hope at that point simply was. And I had hope.
As the months wore on and we desperately tried one experimental treatment after another, hope waned and the poem began to gain the status it holds today. As Alexis' cancer took over, and she was unable to walk, unable to talk, the poem mocked me. The poem spoke to me yet again. Unfortunately, this time I saw that cancer can in fact take away hope. Cancer can in fact "kill friendships." Cancer can in fact "corrode faith." Cancer, it seems is an insidious, indiscriminate killer. It picked on my beautiful daughter and took her from us. And cancer continues to do so to children all across this country on a daily basis. On January 14, 2011, cancer did what the poem said it could not do, it stole Alexis from our grips. Her physical presence, gone from us. The poem was wrong. Cancer did shatter hope.
What is my point? Childhood cancer remains a killer of our children. It also remains woefully underfunded and most people are unaware of this fact. I am not trying to suggest that we should not have hope. We must have hope for a better day in the childhood cancer community. A day when, even if your child survives the harsh treatment, there are no delayed effects or secondary malignancies. A day when you are not pulled into a small little room in a sterile hospital and told your daughter will not survive beyond six to nine months. A day when regulatory impediments to receiving a promising treatment are greatly diminished. A day when the monetary discrepancies between adult cancer research and childhood cancer research is greatly reduced. A day when the simple word cancer alone does not strike fear. A day when the word cancer is incapable of destroying hope.
The poem may speak to others in the cancer community. It is meant to be inspirational, I understand. Quite possibly it is simply my perspective on the words and sentiment. Watching as my daughter lost her battle, I was not interested in reading all that cancer could not do. Cancer did all that the poem said it could not. Childhood cancer, in large part, struggles in anonymity. Maybe it is because bald children are not "sexy" enough, or the thought of the disease itself is too depressing. Perhaps we still adhere to the fallacy that we should focus on creating new drugs for adults and then hope years down the road they work on children. Perhaps it is because we as a society may preach the value of children but do not practice this mantra. Frankly, I do not know where the answer lies.
I am hopeful that 2013 brings us closer to a time when I can accept the poem a little more. Of course, I suppose it goes without saying that no matter what happens, I will never get Alexis back. I believe that there is change occurring in the childhood cancer community. It is singularly a result of the tremendous advocacy and insistence of the parents who are pushing for a cure. It is these parents who continue to push the cause and seek change. Maybe it is time for a new poem. Perhaps. Only time will tell. I hope.