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Superman Sam

by Pauline Dubkin Yearwood

At the end of March, more than 50 rabbis from all over the country will meet in Chicago and shave their heads.

Earlier this week, also in Chicago, a young girl celebrated her seventh birthday with one very important guest missing.

What links these two events is the life and death of an extraordinary child with extraordinary parents and the thousands of people from all over the world who followed his first hopeful, then tragic story.

You’ve probably already heard of Superman Sam, otherwise known as Samuel Asher Sommer, the son of two Chicago-area rabbis, Phyllis and Michael Sommer. From Chicago to Israel to France to Japan, thousands of people followed his story, from his cancer diagnosis in June 2012 to his death last December at age eight, through a blog ( his mother wrote detailing Sam’s treatments, remissions and relapses as well as the family’s reactions.

She continues to blog. Of her daughter Yael’s seventh birthday this week, she writes, “It’s every little sibling’s dream to ‘catch up’ to their big sib, right? How can it be that eventually … she will, in fact, pass him up? Forever 8. He’s forever 8.”

Now the Sommers have turned their attention and their blog (Phyllis Sommer is its primary author; Michael sometimes contributes) to another topic: raising funds for pediatric cancer research. That’s where the head-shaving rabbis come in. At least 50 of them will become “shavees” in coordination with the St. Baldrick’s Foundation when the Reform movement’s Central Conference of American Rabbis meets here the last weekend in March.

(There is no real St. Baldrick, by the way; the name is a combination of “bald” and “St. Patrick’s Day,” the day the first fund-raising shaves took place.)

The idea, originally titled “36 Rabbis Shave for the Brave,” was created by Sommer and a rabbinic colleague, Rabbi Rebecca Einstein Schorr, before Sam’s death. The goal was not only to raise funds for pediatric cancer but to show solidarity with young children with cancer, who often lose their hair, as Sam did, due to their treatments.

To paraphrase the famous opening lines of the novel “Love Story”: What can you say about an eight-year-old boy who died?
Here’s what his mother says: “He was the quintessential middle child even though he was the second of four.” (The Sommers’ other children are David, 12; Yael, 7; and Solomon, 3.)

“His four-letter ‘F word’ was ‘fair,’ as in, ‘that’s not fair,’ ‘why isn’t it fair?’ He adored his older brother and wanted to be just like him. His little sister came along when he was 15 months old, so he didn’t have a lot of time as the youngest. They were the best of friends and they also bickered like an old married couple,” Sommer, the associate rabbi at Am Shalom in Glencoe, said in a recent phone conversation, sounding amazingly upbeat about her family’s desire to make Sam’s brief life and legacy meaningful.

“He was really funny and had a wicked sense of humor,” Sommer says. “He could be a little bit snarky and had a famous grumpy face but underneath it he was smiling.”

“He was a great kid, smart, funny, inquisitive. He played so well with his younger sibs. He loved playing, reading stories – just your typical kid growing up. He loved frogs, lizards, dinosaurs. He loved movies, like ‘How to Train Your Dragon.’ He was a normal kid for most of his eight years,” says his father, Rabbi Michael Sommer. Sommer, the former interim senior rabbi at Congregation B’nai Torah in Highland Park, now takes care of the couple’s children and creates digital Jewish learning tools for iPads.

In early 2012, Sam began to have pains in his arms and legs. His parents first dismissed them as growing pains, and blood work their doctor performed showed nothing. They were told they should take him to the emergency room if his pain got worse.

It did – on the day that Children’s Memorial Hospital in Chicago was closed because it was moving to a new location. The Sommers made the drive to Children’s Hospital of Wisconsin in Milwaukee, where, Phyllis Sommer relates, “they did an MRI and said to us that they had consulted with the oncologist on call. We were like, oncologist? I don’t think we heard any words after oncologist.”

Sam was admitted to the hospital, where he would continue receiving treatment for the rest of his life. He was diagnosed with acute myeloid leukemia or AML, which Sommer has described on her blog as “a trickier form of childhood leukemia than the more common ALL.” She also exhorted readers, “feel free to Google, but … don’t tell me.”

Sam’s treatment, two rounds of chemotherapy to begin, possibly followed by a bone marrow transplant down the road, was mapped out and started.

“For the first two weeks, the first month he was furious, so angry with everyone, the whole world because we were ruining his summer,” Phyllis Sommer says. The family goes every year to Olin-Sang-Ruby Union Institute, the Reform movement’s summer camp in Wisconsin, and this year Sam couldn’t go. “All he wanted to do was go swimming,” his mother says.

Phyllis Sommer began to blog about Sam, his diagnosis and treatment, from the beginning, logging a total of 129 blog posts in 2012 and 151 in 2013. People sometimes asked her how she could share such intimate details of her and her family’s life with anyone who cared to read them. She had a ready answer, noting that she had already been blogging on Jewish topics (at since 2007.

But it was more than that. “Both Michael and I served congregations, and we knew we had a lot of people who wanted to know what was happening. First we were informing our inner circle, cutting and pasting, sending text messages, then we were overwhelmed by emails and calls – some people knew, some not,” Phyllis Sommer says.

“I was already a blogger, had been blogging since 2007 and already had a community of people who talked about their lives, and in some ways a part of my rabbinate is exposing our lives through social media,” she says. “I felt this was just one more experience in our lives and I knew I couldn’t live two different lives – there wasn’t time, I couldn’t live a lie.”

The daily blogging had an important benefit for her and her husband as well. “It became such an important way to process the whole thing, to look at each day and say, this is what we did today. Here’s how it felt. That was incredibly cathartic. It was also a way to kind of keep track of things, keep a perspective on what was going on, to capture this and tie it all in a bow.”

From her perspective today, she says, “I’m incredibly grateful we did it. We have this incredible daily record of hundreds of days of his life. I miss him a lot, and I have this little tiny piece, this daily record, and I can go back and look at it.”

“She’s from a 950-family congregation,” Michael Sommer says of his wife, “and I was the head of a 290-family congregation, and this way everyone could have their questions answered on a daily basis without having to pick up the phone 300 times. Otherwise it would have been too overwhelming. In this day and age, it was very easy to give small snapshots of what we were going through on a daily basis.”

Through the blog, Sam’s fame grew. He received hundreds of cards and presents from sympathizers around the world. Vice President Joe Biden sent him a personal letter. So did TV comedian/newscaster Stephen Colbert. People prayed for him, wrote stories and songs for him. Schoolchildren in Japan made and sent him origami cranes.

Sam’s bravery throughout his illness amazed his parents, they say.

“He just took it in stride,” his father says. “He made cancer look like a bad flu. I remember one of the most incredible days when he wanted to go to a movie. He was on outpatient chemo that made him nauseous. He threw up, rinsed out his mouth, brushed his teeth and said, OK, let’s go to the movies now.”

Somewhere along the way the “Superman Sam” moniker took hold. It was not that Sam was a big admirer of superheroes, his mother says – he was much more interested in reptiles, bugs and dinosaurs and even had a pet turtle.

Rather, she says, “so many people had called him Superman Sam because he was herculean in dealing with the pain, frustration, anger and heartbreak. He was our superman. It gave us a little bit of a gimmick for him, something to focus on outside of his illness.” His parents asked people to send in pictures of superheroes, and soon his hospital room walls were lined with them. And “Superman Sam” stuck.

Sam’s first chemotherapy treatments went well and he soon went into remission. “We were really really grateful and relieved,” Phyllis Sommer says. “Everything went according to plan.”  He completed treatment in November 2012.

He did well until the next spring, when on the second night of Passover he began to have pains in his legs again. “It was exactly what we had feared,” Sommer says. “Half of all kids with AML relapse. We knew what the symptoms were, but that didn’t make it any better.”

He went back into treatment with plans for a bone marrow transplant, which he received that August. The marrow was donated by “some 26-year-old guy – we called him supermensch,” Sommer says. (Bone marrow donors and recipients do not know each other’s identity.) The transplant was initially a success, but by November 2013, the leukemia had returned “with a vengeance,” she says.

Doctors told Sam’s parents there was nothing more they could do, and they had to tell Sam. He was understandably angry.

“He had done everything asked of him and it wasn’t enough,” Michael Sommer says. “He hated that. He was furious. He didn’t want to die. He couldn’t believe it – he had taken all the pills, done everything we asked.” He told his parents he hated G-d, hated everything.

“You’re going to put me in a box and put me in the ground,” he told his parents. “Why did I have to get cancer when I was just a kid before I got to do things?” he asked.

Having two rabbis for parents could not mitigate the situation for Sam, they say. “We didn’t paint (death) as anything beautiful,” Michael Sommer says. “We said it would be painless and that we would do our best. We weren’t going to paint pretty pictures that we couldn’t guarantee because we hadn’t been there. It was more about memory, that we would always remember him, he would always be part of the family.”

Sam made his mother promise not to have any more babies, so he wouldn’t be “replaced.”

Phyllis Sommer says she put a premium on “letting him tell us what he wanted to say. We needed to tell him that at the very last moment I was OK with him hating and being angry with G-d. I had to give him the freedom to express what he needed to express.”

Sam did have one wish: to visit Israel before he died. So in November the family took him there.

The trip was anything but idyllic. “It was very hard, physically and emotionally,” Michael Sommer says. “He was so weak and dehydrated. It took so long getting there, and there were delays in the airport. It was very taxing.”

Sam loved playing on the beach of the Mediterranean, looking for lizards and visiting the Jerusalem Zoo, but it was after the disappointing, difficult trip — his first and last, he knew — that he told his mother he hated G-d. The family didn’t know it then, but there were just a few weeks left of Sam’s life.

Phyllis Sommer details the excruciating events of Dec. 14 in detail in her blog – how the family drove for a scheduled visit to the Milwaukee clinic with a very sick Sam, how a member of the clinic staff told them, “Our goal today is to get you home.” Sam, sleeping painlessly, returned home by ambulance.

That night, Sommer describes sitting next to the sleeping Sam and softly singing his bedtime prayers to him. Then she writes, “We held our child close. He took one final breath … Sam was not alone for a single moment of his life. He died peacefully and calmly and quietly at 12:33 a.m. He was not in fear or in pain. And for that I am eternally grateful.”

Of course, Sam’s death wasn’t the end of the story.

His mother says it has changed her in profound ways.

“I’m a different parent, a different person, a different rabbi. I have a totally new understanding of how this changes somebody, how this feels,” she says. “It gives me pause to rethink some of the theological elements, the way we react with mourners.”

It has also reaffirmed her faith in Jewish rituals around death and mourning, she says. “Oh my goodness, I can’t imagine going through this without the restrictions of shiva, of sloshim (30-day mourning period), the permission to mourn and the permission to step out of mourning as I am able to. I’m really grateful that I have some structure to this. I can’t imagine doing it without that. The structure seems to me to hold such benefits.”

Michael Sommer says that being rabbis, he and his wife are used to dealing with life cycles and with death, even if that doesn’t make their personal experience any easier.

He remembers a time in the hospital when Sam dressed up as a doctor and tried to save the life of an imaginary spider. He couldn’t; the “spider” died. When a doctor came in the room, he told Sam he couldn’t have the spider die.

“Doctors work so hard to save life,” Michael Sommer says. “As a rabbi it’s OK, someone dies, you call the rabbi and you plan a funeral.”

“That doesn’t make it any easier when it’s us,” he says.

Both parents are especially grateful for the support they’ve received and are vowing to carry on the fight against pediatric cancer in Sam’s name.

Why did Sam’s story grab the imaginations of so many people? “It’s a matter of how it was put out there,” Michael Sommer says. “Being rabbis, we literally know a person in every state. Every rabbi is going to relate to it and it sweeps across the country, across the world, to rabbis we know in Israel, in France. It takes on a life of its own.”

The family didn’t know how prevalent pediatric cancer was before Sam contracted the disease, and don’t mind him being the public face of it if it will increase funding for research, they say.

“We’re not going to back away from the fight,” Michael Sommer says. “We hope no family ever experiences what we experienced. Our end goal is a day when zero kids are diagnosed with cancer, zero kids die from cancer.”

Phyllis Sommer says, “If anything can come out of this, it’s that it’s driving our desire to raise money for research, to focus so much of our energy on the need for clinical research, so no other kid or parent” will experience what her family went through.

“I know it’s not going to happen in the next 10 minutes,” she says, but if we can have an impact to keep parents from hearing from their doctors, there is nothing more we can do for your child … We have put this at the forefront of our own effort. We don’t have anything else to give to Sammy.”

Sommer adds that she is “awed” by the reactions from her congregants and her community. “The lessons we have been teaching about caring for others, creating community – I lived that,” she says. “I have watched in particular our young people, seen them come, felt their connection, how much they wanted to help. I’m so incredibly proud of that as a rabbi and teacher. It is amazing how this community supported us.”

She cites a Jewish tradition that says when someone visits the sick, every visitor takes away 1/60th of the illness. “We know visitors alone cannot take away illness, but all those people took away some of his sorrow and discomfort. They made the whole thing more bearable for him and for all of us.”

Michael Sommer says it also helped that he and his wife were involved in giving as well as receiving during Sam’s ordeal. When they discovered needs for kitchenware, DVDs and other goods at the clinic or the Ronald McDonald House where they stayed for much of the time Sam was in the hospital, they set about filling those needs.

“We feel like we’re making a difference rather than just receiving,” he says.

On her blog, which she is continuing, Sommer writes often about her children’s reactions to their brother’s death. The youngest child, Solly, says, “When Sammy gets better, we’re going to go swimming.”

“Oh Solly. I so wish that were true,” Phyllis Sommer writes. “And secretly? I think I’m glad that he talks about Sam as though he might just walk in the door at any moment.”

And when seven-year-old Yael asks if she should include Sammy in a picture of her family, “I was so blindsided by the simplicity of the question that I just answered ‘of course’ without even so much as bursting into tears,” Sommer writes.

“I will never, ever understand,” she writes in her last blog post of 2013, a year she describes as a roller coaster. “We face 2014 … our first year without Sam,” she continues. “I am paralyzed when I think of all that he will miss. I am overwhelmed and breathless when I imagine the future and he’s just not there. Yet I know that we will awaken each day and we will move forward, even if it feels like we’re slogging through a thick fog, even if it feels like we’re just moving for the sake of moving, even if it feels like we’re faking every moment … we will keep going.

“2014, here we come. Be gentle on us, please.”

That’s a wish that everyone can share.


One Response to “Superman Sam”

  1. Rebecca Fistel says:

    Dear Superman’s Parents: While I have only read this brief accounting of your experiences, I know all too well from the personal side. Nine years ago, we buried our 31 year old son Jason Fistel (Maryn Fistel Robinson’s brother. I am sure that u have received thousands of letters, etc., saying very similar words. Your words in the last paragraph of this facebook are exact. I still think Jason will walk through the door. Actually, u might have known him at Olin Sang Ruby. There are times when I am caught off guard and the wind is taken out of me and my chest feels as if someone is sitting on me. I lost a brother to cancer) when he was 23 and had just graduated from U of Buffalo. I saw that my mother, with two remaining children and 3 grandchildren willed herself to be with Harry. One of the first things I said was: “I will not be my mother”. It struck me as so crazy at the time but I knew I had to live. At that point, Maryn was married and Jason attended the wedding. He thanked her for getting married before he did because now his Mom would stop hounding him to get married and have children. Jason was a clown and he got a big laugh. Now we have Maryn, Brett, Lylah (3 yrs) and Oren 5 months. There are many times during each day and then, sometimes not… that Jason is on my tongue… but I must go on and live for when I live and when all who knew him utter his name, his spirit shall live in all.
    May u continue your work to eradicate cancer for children, be the best parents u can be, and tend to your spiritual flocks. Shalom, Rebecca and Steve Fistel

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