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

Wednesday, May 20, 2015

Unwelcome

Dear Ed and Nadia and Olivia,

I ever-so-much wish that I wasn't welcoming you to this awful club, this community of those left behind in the terrible backwash of childhood cancer. So we'll call this an "unwelcome letter."

Emily's face on the front page of this morning's Chicago Tribune made my heart thump harder, my eyes water, and my stomach clench over my coffee. And to read those words, "she is survived by..." made me sob through the whole article. I can't stop thinking about your family today, thinking about the fog and the haze, the way that you're looking out the window and wondering how, how, how is it that the sun had the audacity to come out?

There's noise, I'm certain of that, and a lot of people milling around your house. And then there are the quiet moments, the stillness that feels so deafening, knowing that there's one person just missing from your house.

It's been 522 days since Sam died, and I remember those first hours as though seared into my mind. The first phone calls, the plans, the obituary-writing. I remember wondering how we would live. I remember soothing children and standing under a hot shower, weeping. And I remember how many people reached out, perhaps not right away, and their very existence helped me to see that I would get up the next morning, and the next and the next. Some of them did it by reminding me that I still had an important mission in this world, the mission to make this world a better place. But many of them did it by telling me their own stories. "My sister died." "My daughter died." Stories that I didn't know. Stories of deaths that happened when they were young, so young....and this person was standing in front of me, still standing, and their arms (real or virtual) were wrapped around me, telling me, yes, you will go on.

We get recognized occasionally, as "that family whose son died." We nod. We smile. We might cry a little when you mention his name.

Ed, Nadia and Olivia -- I'm so sad to see your beautiful Emily on the front page of the Tribune. As I said, when Sam died, there are a million-billion other ways that I would have wished for this "fame." (Sam always wanted to be famous, you know.) I wish I had great wisdom to offer you. I wish I had known Emily, and I wish that Sam and Emily could have stood together on an amazing stage and shared their pride and glee at being survivors. I wish we could have seen them receive awards and diplomas, find life-loves and fulfill dreams. When I tell you that Emily did so much in her life, that she accomplished so much and brought so much awareness, I imagine that you say, like me, "if only there had been more time to do more."

It might not feel like it today, and it will certainly never ever be the same, but there will be light again. The light will feel different, a little dimmer perhaps, or a new hue. But there will be light again...for all of us.

With sadness and blessing for your family,
Phyllis

I'm heartbroken to remember that Emily was one of SEVEN children who died yesterday from childhood cancer. I'm even more heartbroken to know that 46 more children were diagnosed yesterday and today and tomorrow with cancer. I believe in a future in which this isn't the case. The 36 Rabbis have reached our goal of $1 million but we can't be done. How can we be done? Please help us.

2 years ago today

Monday, May 18, 2015

Inspiration

It's been a busy month around here.

Today I was honored for "vision and inspiration," by the American Committee for the Weitzman Institute for Science. This is an incredible research facility in Israel that is engaged in cutting-edge medical and scientific research. Some of their cancer research work has been revolutionary and continues to make strides.

We're not there yet.

But breakthroughs are happening.

So I was really pleased to be able to support this organization and be a part of the Women in Science luncheon today. What an honor! Wow...thank you!

And I was able to speak and remind everyone that just today, 46 children were diagnosed with cancer and 7 died. Each day, I believe in a future in which that isn't the case.

But the truth of it is...inspiration has come to me from so many along the way.
And so here is part of what I said today:

I have met so many inspiring women and men along the way in the past few years. Mothers and fathers pushing strollers and wheelchairs, chasing bald toddlers with IV poles. Parents searching all over the world for bone marrow matches for their children, uprooting their families in search of the doctors who know the diseases that afflict their children. Families putting on a brave face, traipsing off to wishful trips and imagining bright futures that slowly dim. Young patients helping other patients, offering comfort and support as they discuss their central lines and their favorite hospital tricks and treats. Cancer survivors offering hope and inspiration by their very existence. Nurses who work nights and days, who remain calm during terrifying moments and work with efficiency and competence to soothe their young patients. Doctors who are kept up at night by the DNA of their patients' cancers, fretting over platelet counts and liver function numbers, and offering what they have, only data-based hope that often doesn't have enough data to offer enough hope. I stand here today representing all of them, knowing that their voices are not often heard. People tell me, often, that our story, Sam's story, was special. I often reply that unfortunately, his story is neither unique nor special. What is different about Sam is that his parents are storytellers with big voices. And so I represent so many others, so many inspirational and visionary people who inspire me every day. I say thank you, not just for myself, but for every person who has and continues to inspire the work of raising funds and awareness towards ending childhood cancer.

Thank you for honoring me, and for giving me yet another opportunity to say Sammy's name out loud to a whole roomful of people.


Photo credit: Tante Anne

Tuesday, May 12, 2015

Dead is Dead: Euphemism and the Power of Words

So...this happened last month: https://youtu.be/UUqr4P7P3gM
(You have to click over to help increase my "views" on YouTube!)

There have been so many things that this blog has allowed me to say, and so many ways that it has allowed me to write and teach about the lessons that I've learned throughout all of this. Sometimes, I wonder if I'm pushing the envelope just a little too far as I talk about grief and the way that it is impacting my family.

It was such an honor to be invited to speak at the TEDx event at Abilene Christian University last month. In case you're not familiar with TEDx, it's an off-shoot of TED, a global series of talks featuring "ideas worth spreading." I thought a lot about what I wanted to say, what ideas I had that were "worth spreading," and while I had a lot to say about a lot of topics (um, under-funding for pediatric cancer research, anyone?), I had to think of what I could talk about that wouldn't cause me to break down in tears on the TEDx stage.

And so I chose to speak about euphemisms, phrases that I've tried to avoid using here on this blog and when talking to my kids. Obviously, it's caused us a few headache-y conversations, with Solly in particular, but I think that overall, it's been right for us.

I think Sam would have been proud of me.

Saturday, May 9, 2015

Dear Sammy

Dear Sammy,

Have I mentioned lately how much I miss you?

Yep.

I meet people all the time who tell me how inspirational you have been to them. I nod, I smile. I don't cry, usually.

But what do I really want to say? I want to ask them to imagine how much more inspirational you could have been if you were given the chance to grow up. You barely go to do anything, after all. So much time spent in the hospital being your delightful self, you never really got to go out in the world and really do something, really figure out who you were going to be. Oh, Sam, I think the world missed out on something big. Everyone thinks their kids are something special. I know that. But you, Sam...I think you would have done spectacular things. I think about it all the time, I wonder what you would say to other kids when we would visit the hospital. I wonder what you would say when you stood on stages and attended walks and blood drives and shave events. (I wonder what you would be doing in school, at home, everywhere...) I miss you every day. And I'm desperately sad about what the whole world really missed out on.

Everyone thinks about you all the time, but Solly talks about you the most. The other day he asked me, out of the blue, "is Sammy taller than all of us?" I felt a little bit breathless to think about how much taller you would be. But then he followed up: "I think Sammy is standing on a big turtle." Yael and I laughed. He makes us laugh every day, and it helps us to feel better. We try to laugh every day...

David cleaned out his room and found two notebooks filled with your drawings. It gave me such pleasure to look at your simple pencil sketches and run my fingers over the sheets of paper...your hands touched these pages. "Classic Sammy," we called them, as we paged through pictures of dinosaurs and monsters and aliens. I can only imagine what kind of artist you would have become. I bought Solly his first drawing notebook this month...you would have been a great drawing coach to him.

Spring is here. Mother's Day is around the corner, and you know that we never made a really big deal about it. You know I think that you should be awesome to your mama every day. But I love the handmade presents and the heartfelt cards (anytime). There are only three people left who call me "mom" and that breaks my heart each and every day.

We're getting ready to close out another school year. You'd be getting ready for a summer at camp, I'd be comparing pictures of you from the beginning of the school year to now. Instead, we're doing these things without you.

Miss you and wish you were here.
Love,
Mom

P.S. Here are a few pictures of your adorable face....missing you every day. Oh, by the way, would you still let us call you Sammy? Would you be insisting on Sam...or Samuel?




Tuesday, April 28, 2015

500 days

We talk about Sam every day.
He's on my mind just as much as my living children.

We're growing caterpillars and waiting for them to turn into butterflies. The last time I did this was with Sam. He loved this project. Truthfully, I loved it too. I admitted last night that I think we're growing caterpillars because I wanted to. I'm glad that Solly and Yael are playing along with me.

I still can't believe that he's just not here.

Even though I know it, sometimes it hits me so hard, like a punch in the gut.

Five hundred days seems like such a very very very long time.

One year, four months, and 8 days.

12,000 hours.

720,000 minutes.

Sometimes I feel as though I'm living every minute. I watch the hands of the clock tick around and I wonder how I'm going to make it to the next one.

Sometimes I feel as though I'm living every hour. Will the next one ever roll around again? Will I ever be ready to take on another hour?

And sometimes it's day by day. It's all I can do to get out of bed in the morning and fall back into it in the night.

And sometimes they slip by...quickly, without noticing. Sometimes I look up and hours have passed, days have flown by, and we're weeks ahead of where I thought we were.

Time feels fluid, uncertain, mixed up.

We were in the car, driving carpool. The girls in the back were discussing when something happened. "It was in 2013," Yael said, "I know because Sam was alive and in the hospital."

Solly is currently obsessed with "the future." When can we go there, he asks. How long will it take to get there? Can we go there now? I answer as best as I can, knowing that my answers are silly. I barely understand the passage of time these days...how do I explain the marching forward of the global clock with this bright little four year old?

Time's such a funny thing, isn't it? Each day they get a little older, a little bit bigger....and a little bit farther away from Sammy. Each day I get a little older, too. Sometimes it feels like the years ahead of me stretch on ...and yet I also feel, so very deeply, the blessing of their growing bodies and souls, their explorations and ideas, their laughter and their hopes and dreams....

Time keeps marching on....500 days without Sam seems eternally long. And yet, it feels like it was just yesterday that I kissed him goodbye.

Day by day....

About a year ago: Boxes
About 2 years ago: What we Know (when it really really began to get scary)
About 6 years ago: My Big Brother Dressed Me
About 7 years ago: Spring Came and Went
About 8 years ago: Like Big Brother

When Sam was 500 days old.... (March 23, 2007 -- can you believe I had pictures from that exact date?)




500 days before he died (August 1, 2012, of course I had pictures)


Okay, this one's from August 2 -- but I love it.