It is no small thing that parents who have lost their child to cancer #StepUp with no benefit to themselves, other than perhaps the desire to fulfill their child’s wish that no other child should have to suffer as they do.
Parents have flown in from all over the country to DC to advocate for the #STARact to improve funding, access to trials and compassionate use when other options have failed – which they do regularly.
As often as I am with cancer families, it still gets me – the colossal loss, the suffering, the impact it has. I was in a puddle of tears twice yesterday.
First puddle; I was in line for lunch, lamenting how chemo has altered my chemistry to the point of new food allergies (all dairy and eggs), making it difficult to eat much of what was available. Also, a buffet lunch is difficult when one hand is busy with a cane and the other is holding a plate, leaving you wanting a third hand for placing food on your plate.
Meanwhile, I began talking with a woman and her daughter in line behind me. Looking at my leg (and cane) they accurately guessed osteosarcoma as the beast who took the bones in my leg. I asked how she knew that. Her son, she explained, had osteosarcoma too.
“Oh! How is he doing? Did he come with you to DC? Limb salvage or amputation?” By now her daughter joined us and the conversation. “Limb salvage” was the answer and “no” he is not with us in DC. He passed away eight months ago.
I lost it. Completely. Ugly cry. Hugged her tight and long and hard, and she hugged me back – an intensity of knowing.
My ‘losing’ it was a three-part cry-fest: 1. shame in my disdain for my own survivorship issues; 2. utter sadness at the loss of this woman’s beloved son; and, just for fun, let’s add 3. survivor’s guilt.
A silent self-check, a re-dressing of gratitude, and utter determination to Make It Better for these families came back into very clear focus. As well as a deep admiration for this woman for flying across the country at her expense to make it better for kids and families still fighting. Amazing.
The second puddle of tears for the day came at a reception on Capitol Hill (interestingly in the former Naval War Room and HQ of the Un-American Activities Committee) where I met a man from California. He lost his little girl to Neuroblastoma. He told me of her valiant battle, and how no more treatment options were available for her, and so she passed away. He is fulfilling his daughter’s wish to help Make It Better so no more kids have to suffer and die. Amazing generosity on every possible level. Amazing. Truly.
I feel so humbled and grateful to be able to do this work. Thank you for reading this, and most of all, thank you for helping me Make It Better for kids with Cancer. Truly, I am blessed with this day, and hope you know how blessed you are for your day, too.
Thank you to the teams of Senator Patrick Leahy, Senator Bernie Sanders and Representative Peter Welch for spending time with me on The Hill yesterday.