When One is Lost

July, 2012

We realized very soon after Clio’s diagnosis that at some point in the course of her treatment, we were going to be confronted with the death of some other child with cancer.

Maybe it would be someone we knew well, whose family we’d gotten to be friendly with. Or maybe  just someone who happened to be inpatient the same time we were, that we knew only by sight, or by the balloons on the door. Maybe someone whose paths crossed ours frequently at the clinic . We dreaded it. And we dreaded having to talk with Clio and Elsa about it if it ended up being necessary.

During the first, long stretch we spent in the hospital, in July of 2012, there was a toddler two rooms down from us with relapsed leukemia. Cutest kid ever, although all that was left of her hair were a few wisps. She loved to walk up and down the hall in her diaper, grinning and saying “hi!” to everyone, as her dad or mom patiently rolled her IV pole behind her.

I don’t know for sure, but I think she’s gone now. Later in the summer, when Clio was admitted to the hospital again for a fever, this little girl had gotten much worse. She didn’t walk up and down the halls anymore. There was frequent doctor and nurse activity around her room, sometimes urgent-seeming. And then one day, a bunch of relatives I’d never seen before arrived, and there were many solemn hugs exchanged as people came and went from the room.

At one point that day, on my way to the kitchenette, through the half-open door, I glimpsed the mother, sitting in the rocker with the little girl (naked, bloated) in her arms, holding and shushing her.

Maybe she’s fine. Maybe my imagination was connecting dots that didn’t need to be connected. I hope that’s the case, but I doubt it.

I know for sure that Sam Sommer is not fine. Rather, he is gone, less than two years after being diagnosed with AML. (A different, less easily cured variety of leukemia than the kind Clio has). I never knew Sam, and have never met his family, but have followed their story on Sam’s mother Phyllis’s blog. (I wrote about this not too long ago.)

I think about them on a daily basis these days — and then I recoil and redirect my thinking elsewhere. The way I did when I thought about the little girl from the hospital who (probably) died.

This is, I assume, the case for any mother, whenever she thinks about a child dying. (I use “mother” here for syntactic simplicity, but this applies equally to fathers.) She feels intense sorrow and sympathy, but then that sympathy edges into empathy, and there’s where you have to stop yourself, because you just don’t want to think about the the thing that inevitably follows: The thought of your own child dying.

You don’t want to think about the magnitude of that pain. And yet, like a hot stove that begs to be touched, you can’t quite help yourself.

But it’s that much more complicated and messy and painful when your child has a life threatening illness herself, and you’re faced with the real threat of her death even as you do everything possible to stave it off (knowing all the while that the ultimate outcome is out of your hands).

Since Sam died, I’ve been feeling a strange mix of emotions. Beyond the sorrow and pain on his family’s behalf, there is relief: Thank God it’s not us. Followed by guilt — for that feeling (because how callous of me) but also for the fact we still have our child and they don’t; guilt for the fact that we can still see and feel and speak to her. Guilt every time I post something happy or lighthearted about my girls on Facebook or Twitter, where I’m friends with Sam’s mother. Guilt because the only reason Clio is alive is that we haven’t lost the genetic mutation lottery.

Correction: We haven’t lost it yet. It’s very rare for kids — especially ones with B-cell ALL like Clio’s — to relapse while on treatment, but in six months, once she’s off treatment, there’s a chance she could. All prognostic indicators so far suggest that she won’t. But there’s no guarantee. And there’s the fact that she might have a particular mutation — an MLL rearrangement — which could be a big, big problem. But we don’t know; the tests were inconclusive. All we’ll be able to do is wait and see. Like Sam’s family had to wait and see.

Which leads to the other emotion that comes with seeing another cancer family lose their child: Fear. And it’s fear of a painfully immediate sort. Because while each family’s story of pediatric cancer is completely different, there are endless things we share in common. From the emotional shock of initial diagnosis to the tedium of the hospital routine to the names of chemo drugs. We speak a common language. So when I hear or read about a family losing their child to cancer, it feels crushingly, horrifyingly real. And I’m forced to confront that fear I so successfully shoo away most of the time, out of necessity.

And then I have to shoo it away again, because to keep it around would be paralyzing. And there is so much that’s good and joyful and hopeful in our lives right now that I owe it to our family and our present good fortune to enjoy and appreciate it. I owe it to the families who have lost their children, who would give anything to be in our shoes.

Clio and Elsa turned seven on Saturday. They are thriving and joyful and full of zest for life. Blossoming. Elsa is becoming a renaissance woman, devouring books and art supplies, filling notebooks with her accounts of what’s happening in the world around her. (Wonder who she gets all that from?) Clio is a singing, joking, budding performer (at home anyway — still shy around others and even on stage with her dad, though she loves to be there), wise beyond her years at times, preciously behind them at others, and feisty as all hell regardless.

There’s nothing to do but stay hopeful as I look toward their future.

Actually, no, there is one other thing to do: There’s donating to cancer research. Yesterday, our family made a donation to St. Baldrick’s in honor of Sam. Sam’s father, Michael Sommer, and 35 other rabbis are shaving their heads to raise money for childhood cancer research. As of this writing, Michael has $2,000 more to raise to reach his goal. In honor of Sam and Clio and the little girl we knew from the hospital and every other kid who has cancer now and who will have it in the future, I hope you’ll consider kicking in a few bucks.

May 2014 bring health and happiness to you and your family.