SeattleAntiFreeze: Superhero

SEATTLE — He was a superhero, but he still only had one percent chance to live.

All Zach Guillot's doctors and nurses -- and there were a lot of them -- had seen him in his costumes: Batman, Superman, Flash Gordon.

He had the energy and the spirit of all those characters. But underneath the masks and hoods, there were clumps of hair missing. There were burns inflicted from the outside in. There were sores and bruises.Acute myeloid leukemia (AML) is the most aggressive, deadly form there is. And the ugly marks it left on Zach were proof.

But he was still a superhero.

"He was just a go for it type of guy," says his mother, Julie Guillot. "We were just go for it type of parents. And Zach wanted to live."

By the time Zach was nine, he had battled twice. Two rounds of high dose chemo. Two bone marrow transplants. Two remissions. But leukemia came back for round three. That's when doctors said Zach was down to his last one percent chance to live.

"Leukemia, if you're listening, you're going down," Zach belted into his mom's cell phone camera from his Seattle Children's Hospital bed.

LEUKEMIA, IF YOU'RE WATCHING, #SeattleAntifreeze, pt. 42--- Seattle, you're beautiful indeed. This family moved here looking for a miracle for their little boy. What they found was a community that embraced them through a greater challenge than anyone wants to face. And now, a life has been saved because of it. Julie Guillot, what an amazing mother you are. Thank you for allowing me to tell a part of your story.-------------- This is Zach Guillot. The super hero with super strength. AUGUST CHODER/FRIEND: he was always ready to like do something, like he never really liked to sit still. August Choder met him when Zach's family came here from Dallas and the local temple sent out a notice.. JULIE GUILLOT/MOTHER that there was a family here and would anybody be interested in meeting them. But this was no invitation to a party - it was an introduction to a battle. JULIE GUILLOT/MOTHER my son was diagnosed with acute myeloid leukemia, a very aggressive form of leukemia. Zach was aggressive right back. For almost four years, he fought leukemia with everything he had. JULIE GUILLOT/MOTHER it is very punishing Twice he had gotten the highest doseage chemo allowable. Twice he had received a bone marrow transplant. Twice the leukemia had returned. That's when the Guillots turned to Seattle. JULIE GUILLOT/MOTHER when his leukemia came back for a second time, and you were just given like no hope at all -- like one percent chance. IS THAT WHAT THE DOCTORS TOLD YOU? oh yeah Seattle Children's was the only place open to doing transplant #3. Zach couldn't leave the hospital in this brand new city- as he prepped for the boundary-pushing treatment. And that's why August and his family felt called to these strangers. ROBIN FREEDMAN/FRIEND it couldve been my family alone in a hospital room and i just felt it was really important for us. The boys got to be boys. The moms got to be friends. JULIE GUILLOT/MOTHER cancer itself is devastating, but when you're watching your kid go through this and all you can do is stand and watch this horrible movie -- i want people to know that there are things they can do to help 2 05 31 i wanted to do something, i wanted to give back. Robin spread Zach's story and organized a bone marrow registry drive. Zach's little brother Jake told his friend Julian, who told his dad. KEVIN CONNOLLY/ENTERED BONE MARROW REGISTRY it kind of seemed like the least i could do While the community added to the national registry, Zach inspired them ZACH: I FEEL GREAT! seriously? YES, I'M GOING TO GET THROUGH THIS AND LEUKEMIA, IF YOU'RE WATCHING THIS, YOU'RE GOING DOWN! Again, chemo. Again, a bone marrow transplant. VIDEO: Singing "Happy transplant to you" The treatment produced healthy blood. But again, it wasn't enough. The chemo ultimately destroyed his liver on February 7, 2014. JULIE GUILLOT/MOTHER I remember the night we walked out of this hospital after he passed away, and i was like, what do we do? I mean, for four years, we had been on the battlefield. FADE TO BLACK THEN UP WITH VIDEO OF ZACH ((nats)) But, leukemia, if you're watching this, Zach's mission is not over. JULIE GUILLOT/MOTHER we're just going to continue to fight. we can't stop fighting for zach They fight for funding and lobby for support, surrounded by allies in Seattle. Including Kevin Connolly. He just recently got a call from "Delete Blood Cancer". KEVIN CONNOLLY/ENTERED BONE MARROW REGISTRY they had a match for me He became a donor, with a nod to the lost warrior. KEVIN CONNOLLY/ENTERED BONE MARROW REGISTRY it was because of zach// that that person is now alive and ready to go home. That is the power of a real superhero. JULIE GUILLOT/MOTHER it really meant a lot to us because for everything that zach went thriough. he's impacting other people. ------------------------------------------------------------------------------ A common misconception is that bone marrow donation is a painful procedure. To learn about/enter the National Bone Marrow Registry (for free) online, or to host a registration drive: https://www.deletebloodcancer.org Zach's third bone marrow transplant used stem cells from donated umbilical cords. To learn more about donating your baby’s cord blood to a public bank: https://bethematch.org/support-the-cause/donate-cord-blood/ ------------------------------------------------ After the Aurora Bridge crash, people in our area jumped into action, donating hotel rooms, blood, prayers, challenging Seattleites' reputation for being chilly (the "Seattle Freeze"). It inspired me to pass along stories of when we see people in the community coming together, or what I call #SeattleAntifreeze. If you know a story that should be told, let me know. mminglaven@kiro7.com To read more stories, click on #SeattleAntifreeze.

Posted by Monique Ming Laven on Friday, May 20, 2016

The community was listening. They were inspired. Family friend Robin Freedman wanted to do *something* to show solidarity.

She organized a bone marrow registration drive to help other people like Zach. More than 100 showed at Magnusson Park. Their mouths got swabbed, and samples went to a national registry.

Kevin Connolly, whose son went to school with Zach's little brother, showed up. "It seemed like the least I could do."

It was so little compared to Zach's third round of chemo and third bone marrow transplant.
Zach was making good on his promise to pummel leukemia. He started producing healthy blood.

Cancer didn't kill him. But chemo did. February 7, 2014 his liver gave up.

"I remember the night we walked out of the hospital after he passed away, and I was like, what do we do?" Julie says.

They'd been fighting for four years. She didn't want to stop. "I've got a score to settle with AML. We've got to keep fighting." And they're not alone.

Two years after Zach died, Kevin Connolly got a phone call from Delete Blood Cancer. He was a match for another leukemia patient.

In March, Kevin became a donor. Last week he got word his stem cells were reproducing in the man's body.

"It was because of Zach that this man is now alive and ready to go home. There's a direct link, and I hope there will be more links on this chain that started with Zach," Connolly says.

Because real superheroes never die. 
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A common misconception is that bone marrow donation is a painful procedure. To learn about/enter the National Bone Marrow Registry (for free) online, or to host a registration drive:https://www.deletebloodcancer.org

Zach's third bone marrow transplant used stem cells from donated umbilical cords. To learn more about donating your baby's cord blood to a public bank: https://bethematch.org/support-the-cause/donate-cord-blood/
------------------------------------------------

After the Aurora Bridge crash, people in our area jumped into action, donating hotel rooms, blood, prayers, challenging Seattleites' reputation for being chilly (the "Seattle Freeze"). It inspired me to pass along stories of when we see people in the community coming together, or what I call #SeattleAntifreeze. If you know a story that should be told, let me know. mminglaven@kiro7.com

To read more stories, click on #SeattleAntifreeze.