Wednesday, June 17, 2015

#StepUp for Sammy

Two summers ago, we were living in the Ronald McDonald House and Sam had a morning bone marrow biopsy scheduled. These required that Sam be "NPO," which is hospital-speak for "starve your kid." His NPO started at 5:30am, I believe. Anyway, the point of this is that Sam was so worried about not eating that he wanted me to wake him up at 4:15am (his choice of time) so that he could "eat a little something" and then go back to sleep.

I think he was testing me.

But I took the challenge, and I set an alarm for 4:15am. And I remember doing a lot of exaggerated moaning and groaning about how much I must love him to get up so early...and then I tagged the alarm with "I love Sam."

And then when the alarm went off at the ridiculous hour of 4:15am, he groggily asked if I could try again at 5am.

So I, ever the loving mother, set another alarm for 5:00am. This one I tagged with "I love Sam even more." If you're keeping score at home, he didn't want to get up then either.

I'm one of those people who keeps all the alarms in her phone. I figure they might come in handy another time, so as not to have to make new ones. So those alarms, for 4:15am and 5:00am, are still there.

Yesterday, I got up at 4:15am.

"I love Sam."

I thought it was entirely fitting, since I got up at 4:15am to catch an early flight to Washington, D.C., where I visited four Congressional offices. In each one of them, I explained that I was there because my 6-year-old son Sam was diagnosed with leukemia and he died only 18 months later. I reminded them that the statistics about survival rates for childhood cancer are more than just smiling bald kids and that Sam wasn't lucky. And I reminded them that even the "lucky ones" are impacted by years of medical fragility and have challenges with access to the care they need. I reminded them of the upcoming appropriations for the National Institutes of Health and the National Cancer Institute and I begged them to give as much money as possible for cancer research. And I asked each of them to sign on as sponsors of the STAR Act, (you can read more about it here) which, amongst other things, asks for a pediatric oncologist to sit on the National Cancer Advisory Board.

Washington was bright and hot and didn't feel like Sam at all.
No feathers or turtles popped up along my way.

But all throughout the day, I felt a warm ball of pride that I could say Sammy's name over and over again in the halls of our government offices. He didn't even have a chance to vote, let alone run for office (He probably would have made a phenomenal politician. He had mad negotiating skillz.) but he  was there with me, pressing me forward and lifting my steps.

If Sammy taught us nothing else, he certainly taught us that one person CAN make a difference.

Do you want to do more? Read here for how you can #StepUp to help make childhood cancer a national priority.

Three years ago....Checklists and PomPoms
Two years ago....Leaky Bubble
One year ago....Instead

Tuesday, June 9, 2015

June, Again

June is the beginning of summer.
June is moving onto the next grade and saying goodbye to teachers and packing up the locker.
June is popsicles on the porch and the sandbox open and the hoses spraying.
June is finding the sandals and hats and sunscreen.
June is stretching your bike legs and packing for camp.
June is camp.

And yet, June is the beginning of our ill-fated odyssey with Sam.
June 9th, 2012, the day that we took him to the ER, the first time that the word "oncologist" was spoken in the same breath as our child's name.
June 2012 was spent in learning to navigate Cancerland and figure out where we all fit in. June was schedules and plums and heartbreak.

June is every day a different memory.
June was the month we spent, in 2013, working out a new plan, into uncharted waters, with unfamiliar protocols and uncertain results, and yet filled with joy and love and togetherness.

And last year, June was remembering and thinking about alternatives. June was second-guessing everything. And June was ice cream and graduations and even one crazy trip to the ER.

And here we are again, June. Missing Sammy so much as we transition into the next season, as we start the next part of the year. Packing up the kids for camp, wishing SO HARD that there were three big duffel bags filled with shorts and tshirts and funky knee socks and old towels. (And wondering how much MORE irritated Solly would be, to be left behind by THREE older siblings instead of two.)

Swimming through the sea of memories each and every day....
June 2006
June 2007
June 2008
June 2009
June 2010

June 2011 (Preschool graduation)
June 2012 (days before diagnosis)
June 2013