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Mon December 24, 2012
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Finding New Meaning In The Loss Of A Son

Originally published on Mon December 24, 2012 5:00 pm

This is a story about loss and meaning. It's the story of a boy who died and a mother who tottered at the precipice of despair. It's about faith — not in God, but in the ability to build from ashes.

The story begins in a Phoenix office building. Here, at the weekly MISS Foundation group for grieving parents, about a dozen people, mostly women, are telling their stories. One mother's son was murdered. Another's daughter died a month after she was born. A baby was born premature; a 15-year-old boy died in a skateboarding accident.

As the stories unfold, Maya Thompson is on the verge of tears. She's pregnant and all this talk of death rattles her. She's seen a child's death up close. Her son Ronan died of cancer in May 2011, just three days before his fourth birthday.

"I called him my spicy little monkey, because, out of all of my three kids, he was very strong-willed and a little rebel," Maya recalls the next day in her Phoenix home. "He was my little sidekick. I think from the time he was born, we weren't really ever separated."

She flips through a photo album, chronicling the brief life and decline of her son, a sturdy blond boy with eyes so brilliantly blue that you did a double-take. Ronan was her third son, and the most robust. He rarely had a sniffle.

She points to a striking snapshot. "This was about two weeks before he was diagnosed. He looks perfectly happy and healthy," she says in wonder. "He was fine, right? But he wasn't."

The cancer spread invisibly, until one day Maya noticed that Ronan's left eyelid was drooping. At first, the doctors thought it was an infection or a stye, but eventually they realized the boy had stage 4 neuroblastoma, a cancer of the nervous system.

A Personal Blog Becomes Something More

Maya began blogging right after Ronan was diagnosed. Her first post, dated Aug. 13, 2010, is called "The Journey Begins." It is hopeful:

"Neuroblastoma is very treatable and even curable. We have our plan in place and the Thompson family combat boots are on."

Initially, Maya and her husband, Woody, were optimistic, even though 70 percent of children with stage 4 neuroblastoma die.

"As we marched through it, the cancer kept dissipating and he was tolerating the treatments very well," Woody says. "And so we were, we were very optimistic. Just looking at him and his spirit, we really did think, 'Yes, maybe the odds are against us, but we feel like if anybody's going to go up against these odds, it's going to be him.' "

They were "very naive" at the time, Maya says. "I will never be naive again. I mean, I just had an ultrasound yesterday where I made the technician check for a mass in my unborn baby's stomach." (The cancer can start in a fetus's stomach, Maya explains.)

Over the next eight months, Maya continued blogging. At first, she did it for family and friends, but soon the blog began drawing millions of readers. Maya's writing was raw, lurching from giddy hope to anguish to blazing anger.

Here's what she wrote a week before Ronan died:

"Everything happens for a reason." BULL**** ... "God has a greater plan for Ronan." BULL****. "Ronan wants to go home, where he belongs, to Heaven" ... Who the **** came up with these sayings because the next person I hear say them to me is going to get punched in the face."

Reborn Again

Ronan died on May 9, 2011. For months, Maya prayed she would simply die.

"I went through a very long period of not caring about myself or anybody around me," she says. "But to come out of that, I almost feel like I've been reborn again. And you either let this pain kill you or you let it make you stronger. I mean, it's a choice."

She set up the Ronan Thompson Foundation to try to develop a cure for neuroblastoma and blogged almost daily about her pain and her plans for the organization.

A few months after Ronan's death, Maya was given tickets to a Taylor Swift concert and a chance to meet the young star before the show. Maya assumed a friend had set it all up.

She was standing in the green room, her back to the door, she recalls. "And I heard this girl come walking in saying 'Maya! Maya, Maya, Maya!'

"And I turned around and it was Taylor," Maya continues. "I had no idea that she even knew who I was or who Ronan was. But she'd been reading my blog for a really long time, and her parents had been reading it as well, and they were just heartbroken over our story."

The two women talked and Swift left to perform. A year went by, and then, one day in September of this year, Maya's phone rang.

It was Taylor Swift. She said she had written a song about Ronan.

"She had used a lot of the words off my blog, so she asked if she could make me co-author," Maya says.

Taylor performed the song, "Ronan," at the Stand Up To Cancer benefit concert in September, nearly breaking down at one point. The song has sold more than 500,000 copies on iTunes, and Swift is donating her half to cancer research.

Maya is putting her share of the proceeds — about $250,000 — into the Ronan Thompson Foundation.

And donations also poured in, many from Swift's fans, who call themselves Swifties.

"I've got these little girls writing me, saying, 'You know, I have $5, it's yours.' Or, 'I want to be a pediatric oncologist now. You've changed my life,' " Maya says. "I mean, all these little tween girls that my son is helping [to] see what's really important in life."

A Completely Different, 'Hopeful' New Life

With the money, Maya hopes to fund clinical trials and build a world-class neuroblastoma research center. It's an admittedly ambitious plan, but "I would never bet against my wife," Woody says.

These days, Maya spends a lot of her time on the cancer floor at Phoenix Children's Hospital. She says it's the only place she feels at peace.

"The world that I used to belong in and exist in will never exist for me again," she says. "So this new life is completely different, and I find it extremely beautiful and heartwarming and inspiring and hopeful, in a way."

She says trying to defeat the cancer that stole Ronan is now her life's work.

"I made him a lot of promises. You know, my biggest one to him was that I was going to fix him and obviously that didn't happen," Maya says. "So my next big promise to him was that I would fix the world and continue to fight for him, since he can't be here to fight for himself anymore. And then fight for these other kids, as well."

The enemy has been engaged. The Ronan Thompson Foundation has raised $500,000 and has just funded its first clinical trial at The Children's Hospital of Philadelphia.

It's a victory — but one that Maya would instantly trade to have another day with her son.

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

ROBERT SIEGEL, HOST:

From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.

And now, a story about loss but also finding meaning in that loss. A boy dies and his mother totters on the precipice of despair. Her story is about faith in one's ability to build from ashes.

NPR's Barbara Bradley Hagerty takes us to Phoenix, Arizona.

BARBARA BRADLEY HAGERTY, BYLINE: It's impossible to measure the volume of pain as the dozen or so parents, mostly women, introduce themselves.

SHAUNA: My name is Shauna. My son, Westin, died July 28th, this year, almost four months ago.

TERRY: My name is Terry. My son is Jamie and he was murdered nine years ago.

MAYA THOMPSON: I'm Maya, I'm Ronan's mom. Ronan was diagnosed with cancer at the age of three, passed away eight months later.

HAGERTY: Thirty-four-year-old Maya Thompson rarely comes to this grief support group. A year and a half after her son died, it is still too painful. Ronan was a sturdy little guy with blue eyes so striking you did a double take.

THOMPSON: I called him my spicy little monkey because out of all of my three kids, he was very strong-willed and a little rebel.

HAGERTY: Flipping through a photo album, she says Ronan was her third son and the most robust, rarely having a sniffle.

THOMPSON: So this was about two weeks before he was diagnosed and he looks perfectly happy and healthy. He was fine, right? But he wasn't.

HAGERTY: The cancer spread invisibly until one day Maya noticed Ronan's left eyelid was drooping. At first, the doctors thought it was an infection or a sty. Eventually they realized the boy had stage four neuroblastoma; a cancer of the nervous system.

The Thompson's aren't a religious family. Instead of turning to God, Maya turned on the computer. She began blogging right after Ronan was diagnosed. The first entry is hopeful.

THOMPSON: (Reading) Neuroblastoma is very treatable and even curable. We have our plan in place and the Thompson family combat boots are on. We are...

HAGERTY: Initially, Maya and her husband, Woody, were optimistic even though 70 percent of children with stage four neuroblastoma die.

WOODY THOMPSON: Just looking at him and his spirit, we really did think, yes, maybe the odds are against us but we feel like if anybody is going to go up against these odds, it's going to be him.

HAGERTY: Over the next eight months, Maya wrote in her blog. At first it was for family and friends, but soon it began drawing millions of readers. Maya's writing was raw, lurching from giddy hope to anguish to blazing anger. Here's what she wrote a week before Ronan died.

THOMPSON: (Reading) Everything happens for a reason - bull (CENSORED). God has a greater plan for Ronan. - bull (CENSORED). Ronan wants to go home where he belongs, to Heaven - (CENSORED). Who came up with these sayings? Because the next person I hear say them to me is going to get punched in the face.

HAGERTY: Ronan died three days before his fourth birthday, on May 9th, 2011. The next day, Maya began addressing her entries to him. She describes his final hours when it seemed he was trying to form tears.

THOMPSON: (Reading) I know it was because you were so sad to leave us. I hate thinking of you sad.

(SOUNDBITE OF WEEPING)

THOMPSON: I'm sorry.

(Reading) I'm trying my hardest my to block this memory out and think of you at your happiest times, the times you were here with us and such a carefree healthy little boy.

HAGERTY: For months, Maya prayed she would simply die.

THOMPSON: I went through a very long period of not caring about myself or anybody around me. But to come out of that, I almost feel like I've been reborn again. And you either let this pain kill you or you let it make you stronger. I mean, it's a choice.

HAGERTY: She set up the Ronan Thompson Foundation to try to develop a cure for neuroblastoma. She wrote in her blog every day about her pain and about her plans for the foundation.

A few months after Ronan's death, Maya was given tickets to a Taylor Swift concert and a chance to meet the young star beforehand. Maya thought a friend had set it up. She recalls standing in the green room, her back to the door.

THOMPSON: And I heard this girl come walking in saying, Maya. Maya, Maya, Maya. And I turned around and it was Taylor, who I had no idea that she even knew who I was or who Ronan was. But she'd been reading my blog for a really long time. And her parents had been reading it, as well. And they were just heartbroken over our story.

HAGERTY: They talked. Swift left to perform. A year went by. One day this September, Maya's phone rang. It was Taylor Swift. She said she had written a song about Ronan.

THOMPSON: And she had used a lot of the words off of my blog. So she asked if she could make me co-author with her of the song. And she wanted to perform it on Stand Up to Cancer.

(SOUNDBITE OF A SONG, "RONAN")

TAYLOR SWIFT: (Singing) Come on, baby, with me. We're going to fly away from here, out of this curtained room, this hospital gray, we'll just disappear...

HAGERTY: The song has sold more than 500,000 copies on iTunes. Taylor Swift is donating her half to cancer research. Maya is putting her share - about a quarter of a million dollars - into the Ronan Thompson Foundation.

After this, the donations poured in, many from Swift's young fans.

THOMPSON: I mean, I've got these little girls writing me saying, you know, I have $5, it's yours. Or, I want to be a pediatric oncologist now, like, you've changed my life. I mean, all these little 'tween girls that my son is, I feel like, helping them, you know, see what's really important in life.

HAGERTY: With the money, Maya hopes to fund clinical trials and build a world class neuroblastoma research center.

UNIDENTIFIED MAN: Oh, do we want to move this tree closer to the wall?

THOMPSON: Yeah, but let's do that at the very end, right?

UNIDENTIFIED MAN: Right.

HAGERTY: At Phoenix Children's Hospital, the Thompson family is decorating a Christmas tree with a "Star Wars" theme - Ronan's passion. Maya spends a lot of her time on the children's cancer floor. It's the only place she feels at peace.

THOMPSON: The world that I used to belong in and exist in will never exist for me again. So this new life is completely different and I find it extremely beautiful and heart-warming, and inspiring and hopeful in a way.

HAGERTY: She says trying to defeat the cancer that stole Ronan is now her life's work.

THOMPSON: I made him a lot of promises. You know, my biggest one to him was that I was going to fix him and obviously, you know, that didn't happen. So my next big promise to him was that I would fix this world and continue to fight for him since he can't be here to fight for himself anymore. And then fight for these other kids, as well.

HAGERTY: The enemy has been engaged. The Ronan Thompson Foundation has raised a half a million dollars and it's just funded its first clinical trial at Children's Hospital of Philadelphia. It's a victory that Maya would instantly trade to have another day with her son.

Barbara Bradley Hagerty, NPR News.

(SOUNDBITE OF A SONG, "RONAN")

SWIFT: (Singing) I remember your blue eyes looking into mine like we had our own secret club. I remember you dancing before bedtime, then jumping on me, waking me up. I can still feel you hold my hand, little man. And even the moment I knew, you fought it hard like an army guy...

SIEGEL: This is NPR. Transcript provided by NPR, Copyright NPR.