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A few months back, I attended a local community concert featuring student musicians from a youth choir and a youth symphony, a fundraiser to benefit an organization I’d never heard of before called the Mikey’s Way Foundation. Mikey’s Way, I learned, was founded by a young man, Michael Friedman, who elected to use his Make a Wish wish to start the organization, to help kids with cancer and other life-threatening diseases, by providing them with electronic gifts (laptop computers, tablets, and other such devices) to help them cope with the emotional and physical hardships of long term, debilitating treatment. When Mikey’s father, Les Friedman, spoke at the concert about his son and the work that is being done in his name, I wanted to learn more, both about the organization, and about this remarkable young man, gone too soon. Les Friedman and I got together in the Mikey’s Way office recently, and here’s what we talked about.

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Name: Les Friedman (in video, above)

Date: June 1, 2018

Occupation: CEO of Mikey’s Way

Hometown:   Brooklyn, NY

Current town: Easton, CT

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Thanks for taking the time to talk with me today, I really appreciate it. When I saw you speak recently at the Fairfield County Children’s Choir and Greater Bridgeport Youth Orchestra concert that benefited Mikey’s Way, I found myself moved to tears by your story, and Mikey’s story. What you said about your son was truly touching; he must have been such a kind and generous person. Can you tell me a little bit about him, what he was like, and what he liked to do (besides help other people)?

I remember the day he was diagnosed. He’d been complaining about a pull in his stomach and that it hurt him when he peed, on the night of his birthday. The next day we went to the doctor, and they took a sonogram. He knew before I did—they kept going over the same area and he knew something was wrong. Mikey was the baby of the family and I thought it wasn’t that threatening, that there would be surgery and a recovery. I thought it would have been better if it were one of his brothers—they’re tougher. He was a bit of a hypochondriac, and I babied him. We coddled him. I couldn’t have been more wrong. What he went through and how he went through it was amazing. It still is.

So he had a hidden strength?

It was the strength of a river, not a trickle.

He was the typical youngest child, coddled. Finding out he had a very rare high mortality rate cancer—he leapt into action. He became the strength of our family.

He made jokes. He supported everyone else.

You never could have guessed how he’d handle this?

Never.

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Mikey Friedman

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I’m glad that he lived long enough to see his Make A Wish happen: the formation of a non-profit to help kids like him. It is a very specific thing that he wanted to do, to provide the electronics to help relieve the tedium and fear of hospital stays, and I, for one, don’t think I would have ever thought of such a thing. But it seems that you really are doing some meaningful work here for the kids…can you speak to why it is so important?

It’s important because it’s what he went through. He had hands-on experience. He knew the doctors did all they could. He could tell you all about the meds, and about cell biology, but he said it’s THIS that’s going to kill me: if the cancer doesn’t do it, daytime television will.

This started ten years ago; technology was different then. We had dial-up internet and cables. The newest Apple products still needed a cable, we had a 25-foot long cable for him so he could move around his hospital room.

People think that we do this to give the kids something to do. And technology does that. Also, there’s a therapeutic purpose to what we do, it’s about connection…everything has WiFi, so that the kids can be in touch with friends, they can use Skype. But the technology can also help you escape. It can divert pain and nausea. When Mikey was using his Gameboy, he was getting lost in that world, and he needed to.

We give them long-term items. We just added virtual reality. These are things they can use for hours every day. For little kids, they can’t yet use a computer or a Gameboy but we still give them toys that are related to electronics. Even the smallest babies can use something interactive. We have these toy bears that talk and they can say the kids’ names.

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Is there some resistance to Mikey’s idea and the mission of this organization? Are people more interested in funding cancer research, or in paying for treatments for families who can’t afford it, than they are in buying electronics?

There’s an enthusiasm for it. There’s a greater understanding today about psychoneuroimmunology, about the mind and body working together. There’s been years’ worth of growth in understanding. A healthy and engaged mind will help heal the body quicker.

Now a case can be made that every penny should go toward research. And there’s actually very little pediatric research that’s done. What sometimes is called research is toned-down adult medication. The National Institute of Cancer—only 3 to 4 percent of their budget goes to children’s cancer.

So we have a lot of work to do in a number of different areas, then.

Absolutely. Research. Charity. But we’re one of the only groups that is doing work for kids right in the moment. Right at the beginning, right when they get started, we can give them something that will make things a little bit better. Make a Wish is a great charity, but for kids who want to do something like take a trip, they have to feel well enough to go. This is something that can be for every kid.

We’re the only ones doing something like this at a national level. We work with 54 hospitals, in 17 states, and we’re still growing. We have more demand than we have funds. We’ve just expanded. We’re at $500,000 a year budget now.

Have you received a lot of community support? How about corporate support? Where’s the money coming from?

We have some local corporate support. The owner of Garavel Subaru—he does a “Share the Love” event. It’s a car promotion, each dealership works with a local charity, and while it goes on, for each car sold there’s a donation of $250 to a local charity. He sends as much as he can our way.

And Junkluggers.

I know that company…I hired them some years back to haul away some stuff out of our garage.

Josh Cohen of Junkluggers, he knows my family. He and my older son go back 25 years, so there’s a personal relationship. When Mikey got sick it really hit home. He became successful, and they came to me. It’s a great business model. People pay them to take away their stuff, and they fix it up and sell it. They have stores called Second Chance by Junkluggers. Josh was a young guy, but he said he wanted to give back and he wanted his guys to understand, so he asked if they could come to a Mikey’s Way Day. For three or four years their people have been coming.

That’s terrific. What have been the best parts of doing this work? Is it now your full-time occupation?

I wish you had been with me yesterday! We just got back from Buffalo, we had a Mikey’s Way Day there. I don’t like to ask people for money, but this part is great. We walked into 17 kids’ rooms, wheeled the cart in, loaded with electronics. That was something Mikey insisted on; he wanted them to have a choice.

Why was that so important?

At that age there’s lack of empowerment. When you’re 15, when you finally start to get a little freedom…and then you get sick, you’re just told what to do. There’s no negotiation. I like the idea of letting them choose. Giving them a voice. They get five options.

I did win one argument with Mikey—he used to make me charge all the electronics before we gave them away.

That must have taken a long time.

Yes, it took a long time and then they weren’t factory-sealed any more. I told him, I can’t charge all this stuff!

But usually he won all of the arguments. Funny story about Mikey. When he got into Harvard, we bought the t-shirt and hat. And that summer we were out on our boat, arguing about something that the boating instructor had said. We’d both taken the same boating class, but he insisted he was right. And he said, “Dad, read the hat!”

But seriously, chemo kills all the cells, the cancer cells and the good ones, too. You feel like shit. These treatments, they go on for two to three years, two to three years of treatments.

I’ve fortunately never experienced it but I definitely know from having friends and family members who have gone through long illnesses, it’s exhausting.

Exhausting, and so isolating. You don’t feel well, you want to curl up in a ball. And we’re here saying don’t curl up, go out in the world from your hospital bed. Skype, use Facetime, get back involved. Hold on to that other life, that life you had before.

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What have been the challenges you face when doing this work?

Raising the money. Continually raising the money. It’s not rocket science, what we do. We look for deals, we buy it all when it’s on sale if we can. Then we go to the kids and let them pick. What would I do if Bill Gates walked in to this office and offered me $10 million? I’d do more. I’d help more kids. I’d train people to do what I do.

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What would you like people to know about the work Mikey’s Way is doing? Do you have an elevator pitch for if you do meet Bill Gates?

This really works. It is better than anything you’ve ever seen. Right next to chemotherapy. You need chemo and you need Mikey’s Way. I mean, celebrity greetings and coloring books are terrific and all, but this really does help kids. There’s more laughter on an oncology floor on a Mikey’s Way Day than at any other time—even Christmas. We make it fun. We don’t ask about medical history, or how long they’re in the hospital, we are about making it fun.

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Do you have many opportunities for volunteers? How can people assist or otherwise get involved?

We like volunteers…we have some volunteers locally. Also, volunteers do turn into money. They get involved and they want to help more. We have 50 to 60 people who help; we have a presence in Buffalo and there are about 30 people up there, and about 35 people here. They do a lot of small things, like donating wine for the gala.

I’ve been involved in a lot of community non-profits and that seems to be the way it works, at my daughter’s dance school (I’m on the board), at the PTA (I was a co-president one year), with all these little organizations and charities for education and culture. Someone makes a donation to the silent auction, someone spends the afternoon decorating, a local business provides the snacks, someone buys an ad in the program. It’s kind of remarkable in a way how much gets done like that.

We do get donations from individuals and also some grants. If we had more money, we would do more.

What you really need is someone from the technology world to provide the computers and devices at cost.

We’ve tried. Amazon gives us a 5% discount. I wish Toys R Us hadn’t gone out of business, we used to get good deals there.

If I meet anybody who can help with that, I will send them your way.

Please do!

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How do you reach the hospitals to get them involved with Mikey’s Way?

At this point, they’re calling us. St. Jude’s called and I asked how they’d heard of us. A patient there had a friend at another hospital and heard about it from them, so they got in touch. The word has spread.

At first we had to convince hospitals to let us come in. Hospitals are very protective of their kids. But we know what we’re doing. We know what the kids (and their parents) want to hear and what they don’t want to hear from us.

Mikey had a rare form of cancer. DSRCT (desmoplastic small round cell tumor). It’s one in three million. He was one of only a handful that the doctors at Sloane had ever seen. I met a kid with DSRCT in Buffalo yesterday. A teenage kid, and he looked like Michael.

Did you tell him that’s what Mikey had?

No. I never do that. I do a presentation for each kid. I show a picture of Mikey, explain that he’s the reason I’m here. He started it, he did it, he raised the first $200,000. But I don’t tell them what happened. You always want to foster hope, not to break it down. Hope is a real important thing. If they ask, I still won’t tell them. I say he’s doing all right. I won’t tell a parent, either, if it’s in front of a kid.

As a parent, nothing can prepare you for losing a child. No matter how sick they are. Not having that head to kiss goodnight, makes the whole difference. It’s a club no one wants to belong to. When Michael passed away, it was 5:05 on October 8^th, 2008. At 5:00 on October 8, 2008, I didn’t know what it would be like. It was a rude awakening. As a parent, you can’t go there until you’re pushed there.

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Do you have any stories about Mikey that that you’d like to share, specifically?

He liked the piss the shit out of his brothers! He was a pain to his older brothers. But now they’re such incredibly fond memories, going on ski trips, him waking them up and scaring them in the car, being that annoying little brother. Now they look a whole different way. We are an athletic family. His brothers were Allstate baseball players. He’d play baseball, but never like his other brothers. The rest of us would play catch and he’d be sitting in a pile of rocks creating scenarios about black holes and spaceships and string theory!

You know, none of this would have happened if he’d gotten his initial wish from Make a Wish! His first wish was that he wanted to spend the day with Brian Greene. Do you know who he is?

No.

He’s a string theorist, a physicist. So Make a Wish called his wife. And she said, don’t waste your wish following my boring husband around! This is when Mikey had relapsed. Driving home from that meeting, it was worse than the initial diagnosis. We were sitting in the car and he said, “I know what I want to do.” I didn’t know what he was talking about, not at first.

It’s a crazy story. It wouldn’t be accepted in Hollywood.

Well, real life, unlike art, doesn’t have any obligation to be believable, right?

It really is unbelievable.

But it’s not the happiest of endings. Then again, it’s also not the ending. You’re still doing this work.

Well, we’ve helped over 6,500 kids. Ask them if doesn’t end happily for them. Ten years after his death, he’s still making an impact. I got a call today from St. Jude’s. We’re going to Pittsburgh and then to Minneapolis to participate with Love Your Melon. And we’re doing to Lurie Children’s Hospital in Chicago. California in September. Duke University. And local hospitals, of course.

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What is the best advice you have received in life?

Two things are coming to mind. One is from Mikey: Really try. And live in the day. When I hear people bitching and moaning about late flights and cold coffee—I actually feel bad that they’ve lost all perspective.

The other thing is to learn to look at everything from a 30,000-foot perspective. Look at the big picture. We sometimes just look at what’s right in front of us and try and deal with that but it’s good to sometimes go as far out and up as you can.

I recently had a parent complain that they didn’t get a laptop during a Mikey’s Way day. Their kid was one, we gave the kid an interactive toy. We don’t give out laptops to one year olds—it’s about the child, not about a free computer. I called that parent back when she complained and I suggested that she regain some perspective. It’s not about her, and the sooner she figures that out, the better.

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Mikey, first diagnosed

Mikey, about 1 year later, age 16

Mikey, helping others

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If you had the chance, what would you tell Mikey now about the work you’ve been doing in his name? I have to imagine that he’d be so glad that you’ve helped so many kids like him.

I’d say—this is the worst joke you’ve ever played on me! No, what I’d say seriously, is thank you. We were never quite sure why he chose to start this. Part of the family thinks that he did this to give us something to do. He knew what his leaving was going to mean. Maybe it was a gift. I think it was. I think it was his last parting gift to us to help us get through losing him.

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I looked on your website and read some of Mikey’s essays…he was a very talented writer, and very thoughtful. What did he like to read about?

The last book he read was on virology. He loved science and math. He went to Harvard and was able to complete his freshman year and he was so glad that he was able to be there.

He did write some really good stuff. He liked to write about his experiences that he was going through. He started doing a diary but didn’t keep that up. He wrote some short stories. He wrote some humor. He wrote about time. How his life after his diagnosis became all about two-month time periods, and living life in two-month increments.

Life with cancer is really in a different language. There’s a drug called Lorazepam and it’s also called Ativan—the hospital calls it one name and the rest of the world calls it the other name.

And there’s a different thought pattern. You don’t plan for the future. There’s none of this where will you be in five years. What’s next? You don’t do that with cancer. You really live in the day. If you feel good today that is a good day.

It must be very hard to deal with, for the staff on the oncology floors, the doctors and nurses there.

Yes. They are super. And it’s emotionally exhausting for them. And for me. I do 30 Mikey’s Way days a year. When I’m done, I’m taking a break.

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On a happier note about Mikey, what was his favorite book?

His favorite book was Dante’s Inferno. He had an Inferno poster and it was up in his school for a long time. I have it now.

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Is there a book everyone should read? If you could give the world a book assignment, what would it be?

A Brief History of the Universe by Steven Hawking.

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And if you could go back in time and do one thing over, what would it be?

That’s easy. I’d go back and find out whatever made chromosome 11 break off and attach to chromosome 22. And I’d make sure that didn’t happen, and I’d have my son back.

I wish you could.

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Les was kind enough to lend me a book he’d complied of Mikey’s writing, which I’ve since read. Reading his words, I was struck again by his thoughtfulness, kind heart, strong convictions, and lively intelligence. I’m glad to play a very small part in spreading the word about his life and his legacy. If you are able to assist with a donation, please consider making one: all those electronic devices are expensive (and Mikey’s Way pays retail prices).

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Laura LaVelle is an attorney and writer who lives in Connecticut, in a not quite 100-year-old house, along with her husband, two daughters, and a cockatiel.

Laura can be contacted at laura@newswhistle.com.

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All Images Courtesy of Les Friedman and the Mikey’s Way Foundation

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Other Q&As by Laura LaVelle

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* Eric Bennett, author

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* Alexander Campos, Executive Director, Center for Book Arts

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*Claudia Connor, International Institute of Connecticut

* Sarah Cox, Write A House

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* Kinsey Dyckman, Board Member, Dyckman Farmhouse Museum

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* Martha Albertson Fineman, law professor

* Christopher Fowler, author

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* Beth Johnson, Townsend Press editor

* Mahanth Joishy, founder of United States – India Monitor

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