Tuesday, October 11, 2016

Blurred lines

I recently applied for a job at the FDA, one that I never dreamed that I would want. In truth, it is a position that I probably will not get. But the Ramers try not worry about odds, and just go for it. The application asked about my advocacy experience.

My first thought was "Damn, I just had plans to go to Washington DC for that pediatric cancer rally via Truth 365 with Lauren for her birthday." Truth 365 is an advocacy group that works to change the travesty found in only 4% of the NCI research budget going to pediatrics.  I do recognize that this trip might sound like a crappy gift for the average fourteen year old girl.  The only thing crappier? That I stood Lauren up for her birthday cancer rally because Brent had surgery and a five day admission to the hospital.

It was a stellar weekend, all the way around.

But, back to my application.  I tried to remember official ways that I have represented the RamerNation.  It occurs to me that our core community is really hard to identify. Is it found in organizations that support pediatric cancer research, like Flashes of Hope or Alex's Lemonade Stand? Should I continue with non-profits focused our genetic problem, like Living LFS? Should my effort be directed toward organizations serving people with specific cancers that we have experience with, like the Leukemia and Lymphoma Society or Be The Match? The Sarcoma Alliance? Perhaps a more general cancer organization like Stand Up to Cancer, or the American Cancer Society would be more appropriate because apparently, the Ramers have an 'equal opportunity' approach when it comes to developing malignancies. But I also serve on Family Advisory Council at Rainbow Babies and Children's Hospital to address the more immediate practicalities of hospital living, which has nothing to do with cancer whatsoever.

While all of these relate to some facet of our identity and each addresses issues that we care deeply about, no single organization is adequate to represent our family's needs in total.  No official group has a platform sufficient for all that I have to say. Like an awkward teen, I joined a bunch of cancer clubs, trying to find where I best fit, and where I might be a clear voice for my children.

Rather than finding my place in a chorus, I find that I am more suited to singing solo.

I sought out our elected officials while in Washington DC in May, to speak about how children with limited treatment options ought to have access to adult clinical trials. I didn't represent any organization officially.  I was just a mom, sharing our personal experience, and our needs.

I recently attended Cancer Research Institute's Patient Summit in NYC, dedicated to immunotherapy, something that I have been following with great interest for years. Researchers are developing safer and increasingly more effective approaches to cancer, harnessing the immune system to treat various malignancies. Traditional chemotherapy and radiation are genotoxic.  With LFS, we have rather questionable DNA to begin with and don't need to add insult to that injury.  I spoke with researchers, of course mentioning LFS, the array of diagnoses that the RamerNation has faced, as well as the potential of immunotherapy for children. Advocacy lines in these situations can seem blurred.

A few days later, I went with my friend to her oncology appointment at Memorial Sloan Kettering, and witnessed in someone else how the lines become blurred for the greater good. Gabby advocated for herself as her treatment plan was sorted out, for her local community as changes in hospital formulary were enacted because of her efforts, and for the overall LFS community as her physician outlined a potential research study for early detection of cancer. This all occurred quite informally, while Gabby sat on an exam table in a hospital gown. As she talked with her oncologist, who is an influential doctor in an influential institution, I saw her passion, and heard her speak for our community, echoing a sentiment that we have held privately for years. "If you fix mutants, you fix cancer."

It was powerful, but nothing that you can easily put on a resume.

Lucky for me, I don't actually need a resume for the position that I currently have: I advocate for my children and for the various communities that they belong to.  Advocacy doesn't require rallies, titles or fanfare. Like Gabby and so many folks, I just see what would be helpful, and talk with those who could make these things happen.

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