At CPN we have this thing that happens. I call it CPN Serendipity – people come toward us bringing stories, wisdom, and expertise just as we, the staff, are talking about additional resources we want to include on the website. And more often than not, we discover some far- off mutual connection we already have, making it all the clearer that this person is the right person. And so, it was with Amy Graver, our newest Blogger in Residence.
Amy is mom to four – Connor, Claire, and twins Lauren and Emma. I first ‘met” Amy last March after she submitted a story journaling a conversation that she had with her daughter Lauren; a conversation in which she needed to tell her 7-year-old daughter that she had cancer (rhabdomyosarcoma). Lauren asks her mother, “What color is my cancer?” Amy uses the shades in a Crayola box to explain the many forms of cancer telling her, “When the doctors figure out what shade your cancer is, they will know what medicine to give you.”
Reading Amy’s piece, I felt both an ache in my heart, and a deep respect for her courage and creativity in delivering the news to her daughter and her generous willingness to share this very intimate moment with the CPN network. This past June Amy shared another blog with CPN and alongside me presented at a patient organization conference.
So where does serendipity come in? As it turns out just days before Amy sent her story, the CPN team talked about a need to expand our resources for parents of children with cancer. During that same period, several families contacted me looking for support when parenting twins where one twin has a serious illness. The additional connection – well it turns out Amy attended a presentation Blyth gave a year earlier! And so it seems perfectly perfect that Amy will bring her perspective to the Network as our newest Blogger in Residence!
September is Childhood Cancer Awareness Month. The first time I heard this term, I was with my daughter Lauren. She was 2 months into treatment for rhabdomyosarcoma, a rare cancer where cells that should turn into muscles, turn into cancer. We were in the pediatric oncology clinic and the child life specialist stopped by with an activity packet. Child life is a godsend in the hospital and clinic, but today’s packet made me raise an eyebrow. There were pages of cancer ribbons to color, gold cancer ribbon stickers — as gold is the color designated for pediatric cancer — gold ribbon tattoos and some markers. The packet was supposed to help bring awareness to pediatric cancer.
Now I only took a few college marketing classes, but I recall enough to know that we are not your target market for this type of awareness. In fact, we would be considered a saturated market. I looked at that packet and thought, How much more aware can my family make people? My daughter is bald, and we’ve adjusted our school, work, and life schedules to get to the clinic for chemo 5 days each week. Our lives are upside down with awareness. I looked at the packet of stickers. My girls LOVE stickers and won’t turn down a tattoo, but these were headed to the trash can. Lauren was a walking sticker, the epitome of pediatric cancer. And although we were just 2 months into treatment, I felt, and still feel, that pediatric cancer has given me a full body tattoo of awareness. I don’t need your silly packet.
Awareness is better directed to researchers, governmental agencies like Congress and the NIH, foundations, and pharmaceutical companies. Funding for pediatric cancer represents a scant 4% of funding for all cancers. In other words, for every $1000 spent on research — new drugs, better drug efficacy, better imaging, better quality of life — $960 will be spent on adult cancers and $40 will go to pediatric cancers. What kind of life changing research can you buy with $40? Some of the drugs treating Lauren’s tumor haven’t changed in 30 years. 30 freaking years! There’ve been improvements, certainly, and thankfully, but profits for drug companies are in adult medicines, not children’s. That’s why you see so many fundraisers — like St. Jude’s, St. Baldricks, Cal’s Angels — raising funds for research. Many of them are outgrowths of parents of kids with cancer, trying to make things better for the next family in line. Because that’s where real change is happening. Send a coloring packet to the heads of hospitals and drug companies.
And while we’re at it, send another to our legislators, to enact laws so pediatric palliative care is available and accessible for all cancer kids, at the start and throughout their illness, not just at the end of life. And another law so parents don’t have to trade financial ruin for their child’s treatment. Bankruptcy is a common but underreported side effect of cancer. The treatments are so intense, and with long hospital stays, it’s nearly impossible to hold down a job and care for your sick child. I hold our family’s insurance benefits. I was one of the lucky ones, my employer gave me flexibility to work during Lauren’s illness. Had I not had that luxury, I could have lost my job, we would have lost coverage, and I’m certain, lost our house and cars. Access to mental health would help too, because cancer is hard on marriages. Let’s spend $40 on gold stickers for our lawmakers to wear.
I now struggle with how to spread my own version of awareness. Is it enough that my family gave the ultimate sacrifice to this disease? Lauren died at age 10. Like so many mothers and fathers of children with critical illness, you would think there is no more to give. But that’s the beauty, my fellow parent warriors. Even after the ultimate sacrifice, humanity calls us. And as we navigate the weeds of devastation, a love force pulls us to help the families that follow. I’m still working on mastering that pull. My perfect version is when everyone I interact with becomes aware of Lauren’s gifts and the mark she made. Her ripples were small but mighty. Lauren’s light is too bright to be confined to September. Because of her, every day should light up gold.
Amy Graver currently works in the corporate world, and is a writer, a wife, and mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey on which cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history, she aspires to be a professional seashell collector, and is absurdly competitive about things that don’t matter.