It struck me shortly after I was diagnosed with breast cancer on Jan. 6 of this year how grateful I was to be the one in my family with cancer. I was nauseated with fright and dizzy with all of the details of what lay ahead of me, not to mention nearly paralyzed about the possibility that it had spread — but I knew that I had more control over myself, my emotions, and how to attack it all than I could possibly have if it were happening to my husband or kids. To see those closest to me in pain and fearing for their own lives? It was a thought that literally took my breath away as it raced through my head during bouts of insomnia at night.
Thankfully my story is one of the good ones. While 2014 will go down as the longest year in history for me as I plod through the painful and painfully long reconstruction process, the cancer was caught early, which means that while I’ll still die one day, it won’t be because of my breasts (especially since I don’t have them anymore).
I wish from a deep and aching place that Sam Sommer also had a happy ending.
Sam, one of Phyllis and Michael Sommer’s four children, was only 8 years old when he died of acute myelogenous leukemia on Dec. 14, 2013. Phyllis can tell you without missing a beat exactly how many days it’s been since he passed away. She’s the author of Superman Samuel, a poignant and heart-wrenching blog that has chronicled Sam’s story and her family’s rays of happiness, clouds of unspeakable grief, and the never-ending storms of strife throughout his treatment, death, and the aftermath.
One of the many hard parts for Sam during his fight was losing his hair.
“I think it was more the idea of the change, rather than the actual hair loss,” Phyllis wrote. “It changed how he looked, and it changed how people looked at him.”
It seems bad enough to go through cancer yourself, but to watch your child suffer in any way — whether it’s because he’s being stared at for looking different or suffering from the treatments — and to also know that he knows he’s going to die? It’s too profoundly sad for words.
Phyllis, however, hasn’t let the misery of Sam’s death incapacitate her. She wrote on her blog:
The only way we are going to end this terror once and for all is with the research that will create better treatments, more effective protocols, and better long-term prospects for all survivors. By funding research, I know that I am putting my heart and soul into my own private goal of a day when no other parent will hear what we heard: ‘there’s no more that we can do for your child.’
She and Michael are trying to channel Sam’s memory into something positive and lasting. That’s why on April 1, they both shaved their heads in his honor. The Sommers, who are both rabbis, along with more than 70 of their friends and colleagues across the country, had a date with a razor in an effort to raise money for childhood cancer research, which, according to the St. Baldrick’s Foundation, are the biggest killers of children in the U.S. Despite that, “all types of childhood cancers combined receive only 4 percent of U.S. federal funding for cancer.”
“Today I shave my head,” Phyllis wrote on April 1. “Today my outside will begin to match the pain I feel on the inside. Today, like every day, will never be the same.”
On a subsequent blog post, she wrote, in part, of her shaved head:
It mirrors the ‘phantom child’ feeling I have.
The sense that I should divide things into four portions.
The sudden worry that I’m coming up one short.
People keep asking me what Sammy would have thought of all of this.
I so dearly wish I could ask him.
It is a sentiment that no parent should ever have to write, or even worry about writing. But childhood cancer is not just something that happened to the Sommers. No one is immune. And no child — and their parents — should ever have to endure this.
“You’re only as happy as your least happy child,” my dad has said to me often.
So how do you ever find happiness again when you have a child taken way before his time? One who knew he was dying and wanted so badly to live? I had known about Sam’s story, and of his passing, when I got my cancer diagnosis. It’s what partly made me thankful that it was me who was stricken. Because how Phyllis and Michael were able to carry on in the face of their child’s illness I just can’t conceive. Their courage in the wake of his death to look beyond their own loss and try to prevent it in others is even more unbelievable.
“My hope is that there will be a day when no one has to fear losing their child to childhood cancer,” Michael told the News.
The only thing harder than reading about Phyllis’ struggle during Sam’s illness was reading about how she said Sam thought about/saw/projected/dealt with it himself. Now when I think of Sam, though, all I think is: 4 percent. That, and: How is it that all the money isn’t going toward this cause?
To donate to the St. Baldick’s Foundation in honor of Superman Sam, click here.
Photos used with permission from Phyllis Sommer
More from Meredith on Babble:
- Georgia’s Wilcox County High School Enters the 21st Century, Allows Racially Integrated Prom
- Honey Maid Lets ‘Love’ Rule with a Special Message to Their Haters [VIDEO]
- This Is Not an April Fool’s Joke: The Moxie Girlz Poopsy Pet Doll Literally Poops Rainbows
- ‘I Don’t Wanna Be 4!’ A Preschooler Waxes Tearfully — and Hilariously — About Getting Old(er) [VIDEO]