Today would have been Ezra’s 11th birthday.

I have been thinking a lot lately, of how we should be. Every night for the past 15+ years, before I fall asleep I think of the things during the day which I liked or loved, and the things I felt uncomfortable with (external or internal). I make mental notes to arrange my life to be able to do more of those things that I liked or loved, and try to understand the areas I felt uncomfortable. Is there something I need to learn? Something I should have done or said, or not done or said?

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ― Mary Anne Radmacher

We lost Ezra. We lost Price. We are changed. I find myself less ambitious in the classic sense of the word; I care little for “success” outside of the calmness that comes with stability. I find myself working to see every person as the same as me – of worth, broken, strong. Capable of great love, and capable of shame. And when security shows itself fleeting, I am reminded that the people around us are so very, very valuable.

Of course I want to accomplish. I want to build things. I want to know that in the places I am able to make a difference, I am doing so. That Charley and Robyn feel strong, and compelled to take risks and spend time on things they love, and that they know there is always home. • I want my friendships to make each of us better – more capable, more comfortable, both encouraged and challenged. • I want to know families whose kids are fighting cancer will have – ARE having – a different story than we do, because, in part, of my efforts to tell our stories, and raise money, and put it to effective use. • I want to be the person who runs to open the door for someone who needs it, who does the right thing when no-one is watching or will ever know, who speaks up when someone is mis-treated. I am not always that person.

We are, individually, small. But in community, we feel something more peaceful; a sturdier, older feeling of strength. A rightness and activating of spirit.

“And at once I knew, I was not magnificent.” ― Bon Iver

I am pulled to create. To sit and write this post. To make sure I make space without “tasks” where I think up creative ideas. To make something – a song, a meal, a story. To include Charley so he, too, feels that pull and creates.

I am pulled to slow down. To listen to a full album, front to back, without reading or texting or driving or talking. To read a book which has nothing to do with personal development. To go on a run and let the sweat and the sound of my breathing and every fall of my foot be the only things in my mind. To sit with Robyn, two cups of coffee between us, and talk with her, without a single thought to any of the “to dos”.

Finding balance is our constant struggle – to mesh that ambitious, magnificent, restless big dreamer we are with the compassionate, beauty-in-smallness, comfortable-precisely-where-I-am self we also are.

I miss Ezra. I wish I’d been able to know Price. I am changed by their loss; the moments I understood tragedy. I am not unique in knowing. I will try each “today” to know we are loved, and to help the people around me know it, too. Sometimes quietly, sometimes loudly.

“The job of the wise person is to swallow the frustration and just go on setting an example of caring and digging and diligence in their own lives.” ― David Brooks

We had a powerful start to the week. We had some new friends in town shooting film footage of our story. It was therapeutic for Robyn and I. Usually, when we talk about Ezra, it’s details: born 2008, diagnosed with neuroblastoma at 400 days old in 2009. 13 months of treatment. Surgery, chemo, etc. Died November 8th, 2010. These past couple days though, we explored how it felt. The “dangerously numb” feeling after he died. The lack of caring for self during treatment, while we poured into Ezra, Price, and Charley. The years of sleeping pills, too much whiskey and bitters, wondering if we were “ok,” and what that even meant for us. It was honest to the point of being nerve-wracking, and refreshing. I know how people WANT us to feel, and too often I mold my words to wrap a bow on our story. I do a disservice to anyone who is genuinely trying to understand how these past seven years have been for us if I fail to explore the pain and grief as much as the amazing things that have happened in spite of and through our losses. Our losses have reshaped who we are. We will never say “everything happens for a reason,” as I could never justify saying Ezra needed to die in order for the good we’ve done since then to come about. I do know you choose what you do when your world falls apart, and I am proud of Robyn and myself, and all those who’ve helped us, for what we’ve done since then. The footage we shot these past couple days may take a while to come to you, but I hope when it does, it means something. And for anyone who carries loss in their bones as we do, our love to you. Thanks for coming over, Reed Morano and Dani Girdwood.

originally posted on Facebook

My wife Robyn and I’s first born son Ezra died in 2010. He had been diagnosed with cancer on the 400th day of his life, and lived exactly 800 days. Ezra battled cancer half his life. He smiled through most of it. He was funny, curious, and compassionate. He flirted with strangers. He learned to walk and to talk in hospitals.

We learned a lot from Ezra, like you can dance and laugh through cancer. We learned the pain from some losses never goes away; it just moves from your skin to your bones. We learned childhood cancer is not yet beaten, and that incredible, strong, fragile families are also learning this every day.

Five years ago — a month after Ezra died — Robyn and I started Because of Ezra, a 501(c)(3) non-profit with a goal of finding and funding a cure for neuroblastoma and other childhood cancers. It has grown, giving over $700,000 to support patient-affecting childhood cancer research, including the first ever national clinical study approved for all incurable childhood cancers, and trials of a drug called DFMO which we hope is stopping relapse (over half of kids who beat neuroblastoma relapse — and there is no currently known cure for relapsed neuroblastoma). The results are promising.

Largely though, we have been working on Because of Ezra out of our margin. Robyn is a full-time mom, and our stubborn and joyful son Charley (born a premature twin; his brother Price died at one week old) has medical issues which take up much of her time. I had a couple tech companies I co-founded which took most of my time. (ModMy, LLC is a network of community sites with over 2m members who love modifying their phones, and Laicos is a Tampa-based Startup Studio and mobile / web creative agency.)

As I’ve spent these 6 years living in the childhood cancer world, meeting the families and children, the researchers and clinicians… I’ve fallen terribly in love. Childhood cancer is a crushing, inspiring world to live in. Daily, we are reminded of Ezra and our loss, and simultaneously built up as we meet more and more families battling and beating neuroblastoma. We are blanketed in loss, knit together by strength people should never have to know they own, and we stand at the front of a war, trumpeting a battle cry.

I’ve loved technology since I was young, and have had a ton of fun (and some success) building companies in that space, but my heart was being pulled strongly toward continuing Ezra’s fight, and that of so many other kids we’ve met since he died. I spent 2015 wrestling with the thought of going full time with Because of Ezra. I had the conversation with Robyn many times, and a few people I respect in the childhood cancer world.

One of those conversations was with a gentleman who lost his daughter to neuroblastoma, and who has since with his wife (and team) raised over $100m toward beating childhood cancer. Over coffee, I asked him how it was moving full time to a non-profit. He told me it had been a big change, but they’d never looked back. That he and his wife knew they had to push this, and ran full into it. The conversation resonated with me. I had another conversation with a friend doing similar work, and his words were even stronger: “If I wasn’t clear — please allow me to state it now: Do this full time.”

And so, starting the first week of 2016, I am. I have resigned my position as CTO of Laicos, giving it to our talented Senior Architect Yeng Yang. I will remain a board member and advisor in Laicos, which my co-founder Ryan Negri will continue to run. Beating childhood cancer is my main goal now. And, surrounded by a powerful group of parents, kids, advocates, supporters, scientists, and clinical doctors, we will achieve this goal.

Because of Ezra has massive plans. We are working with the NMTRC and Dell on funding and advancing promising personalized medicine research. We are funding and pushing forward a drug called DFMO with very few side effects, which we hope is stopping relapse in kids with neuroblastoma. We pay attention to the entire neuroblastoma research landscape, and maintain relationships with other passionate groups who are doing our type of work.

We are beating childhood cancer.

Robyn told me, when proofing this post, Ezra was all the parts of me she loved. To know his name has some small attachment to the work we’re doing, affecting so many kids who are fighting childhood cancer now… it’s a bittersweet feeling. And really, though we started this because of Ezra, we continue it because of so very many children.

Our Because of _____ program recognizes we fight in many more names than Ezra’s.

I’d love your help. We’ve built an incredible network with Because of Ezra and the many people involved in furthering our mission. As I dive full time into this, we’ll need even more help to make our goals a reality. Please, reach out to me at kyle@becauseofezra.org to partner with us. We have big, audacious things we’d like to do — and the right support and partners will make them happen. Whether you’re a parent needing to connect to someone or know what treatments are available, or maybe wanting to partner with us through our Because of _____ program, or a corporate partner looking for an impactful charity to align with, or a volunteer wanting to help… there are many opportunities, and we need your help. Let’s continue to be an ever-growing fist in the face of childhood cancer.

↑ Ezra. For more of his story, read becauseofezra.org/why.

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If you’d like to be a part of the work being done to cure childhood cancer, we welcome your involvement. If you are a parent seeking information on clinical trials we help to fund (or anyone with a comment), you can reach us at becauseofezra.org/contact. You can support Because of Ezra financially at becauseofezra.org/give. Because of Ezra, Inc is a 501(c)(3) tax-exempt organization with the Internal Revenue Service. Our EIN is 27–4013571. This article was originally published on my personal blog.

We have absolutely been honored to have so much support this year in our Karaoke for the Kure events, both in LA (August 17th), and Tampa (Sept 26th). Over $125,000 was raised for childhood cancer research in LA, and over $93,000 in Tampa.

In Tampa, 7 families who’ve personally fought or are fighting childhood cancer showed up, illuniating why we’ve started our Because of _____ program. We started Because of Ezra, well, because of Ezra, but we’re still pushing now because of so many kids and families.

Over 400 people showed up in Los Angeles, most of whom Robyn or I didn’t know, which makes us proud. We are sharing the stories people need to hear, and we are working to get people on board with this mission of curing childhood cancer. We are beyond grateful to United Talent Agency and Marissa & Matt, Erica and Brad, and all our friends in LA who made the LA event a success, again.

One of my favorite moments, and one of the hardest, was singing at Tampa’s event. Robyn asked me a couple weeks before the event if I would sing “Fix You” by Coldplay, and my initial reaction was “no way.” It’s a sad song, but beautiful, and I didn’t think it fit (nor that I could get through the song). But, as is usually the case, she was right – it fit perfectly into the evening, and we covered the screen behind me with kids we’ve met over these past 5 years as the song played.

Because of Ezra continues to grow, and I feel like I’m using the words “proud,” “honored,” and “humbled” constantly, but I experience those things daily. Robyn and I, Noelle Muniz now as well (our new Assistant Director for BoE), and all you supporting BoE, are little pieces of a giant group of people doing things just like us, and genius researchers and passionate physicians and clinicians all pouring their hearts into making it so, as Dr Giselle Sholler said this weekend, “we never have to tell a parent again, ‘your child is incurable.'” It makes a difference.

Love you all. I’ll make it a point to write here more often, and not just on big occasions, as I know we’ve been slacking a bit.

 

Today, our friend Brooke Hester died.

I’m overwhelmed with love and anguish for her family. There’s a crushing feeling in my chest, which gets tighter as tears gather in my eyes, and there’s no release when they slip down my face. I’m so sorry, Jessica, Beau, Benjamin, and the little sibling on the way.

When we first met Brooke, in Grand Rapids, MI, we were filming her story. She was all business and smiles, saying a brusque hello and quickly making sure we had a gift from her prize cart. A squirting clown flower for me, and a “blossom” for Robyn (a flower for her hair, with a clip expertly hidden beneath).

While we were filming, Brooke was watching a video on her iPad with her headphones in, and at some point she looked up (just as her mom was whispering an emotional sentence), and shouted something random about the cartoon. It was that thing where your sense of volume is all messed up from having your headphones on, and we laugh to this day remembering and re-telling that story.

Over the next couple years, Brooke and an army of volunteers gave out over 19,000 blossoms, and many more smiles, through her organization Brooke’s Blossoms. Jessica and Beau stood strongly by as their daughter’s constant smile accompanied her determination to bring joy to kids in the hospital floors Brooke shared. All the while she was battling neuroblastoma, diagnosed in 2010, the year we lost Ezra to the same cancer.

The world’s not fair. Beautiful, inspiring people are torn from us. Kids get cancer, and sometimes die. Strong, good, determined families are left with loss. It takes us too long to find the cures we need, and we are pierced with pain, with an intimacy with tragedy which becomes a part of who we are.

Brooke lived. Her joy was loud, and she should still be here. We should be able to cure this. Jessica should still be laughing with her daughter, and Beau should still be that strong, safe embrace. She deserved to keep being that amazing big sister.

Hesters – we love you. We know it hurts, and we will always be here for you. I am so sorry. Robyn and I will mourn your daughter too, and we will not stop fighting to change the story for the next family. We love you.

“We really feel like Ezra started this fight and we’re going to continue it for him,” Matthews said. “The more families we meet, the more kids we meet on these trials … It’s not just a lab, it’s kids and families going through the exact same thing we went through.

“We don’t think it’s an incurable disease. We just think it hasn’t had enough attention. These kids can’t really speak up for themselves, so somebody had to do it for them.”

A huge thank you to Ernest Hooper for his article about Karaoke for the Kure (see you there!) and Because of Ezra in yesterday’s Tampa Bay Times. Read the full article at TampaBay.com.

My memory is very clear of October 4, 2009, the day Ezra was diagnosed with cancer. Dr Chris Rossbach sat down at St Joseph’s Children’s Hospital in Tampa, and told us Ezra had stage 4 neuroblastoma. I’d never heard the word, and couldn’t spell it. I didn’t even know what stage 4 meant (it’s the worst stage in cancer).  I couldn’t imagine a world where my only son had cancer, although I’m pretty sure Robyn had that fear – she lost her dad to cancer when she was 9. Now, we’re friends with dozens of families whose children have or had cancer.

We lost Ezra November 8 of 2010. I remember trying to stuff a bunch of pillows we’d brought from home into the back of our car for the 90 minute drive home. I felt very little – or more likely I felt so much my body simply couldn’t process it; I was in shock. It felt wrong not to be bringing Ezra with us, and I wonder who brought him home to Tampa. What a strange job that must be.

Less than a month after Ezra died, we formed Because of Ezra. Officially 2011 was our first year, but we’d begun work quickly after his death. Although we’d learned a lot in the first 10 months or so of his treatment while we went through frontline therapy (which has a national treatment protocol), the last few months of Ezra’s treatment blew our minds.

When he relapsed, the day before his second birthday, the conversations with physicians changed drastically. Our oncology team asked us what we wanted to do next – without presenting any options than “you should pick a trial.” We didn’t fully understand the significance of the shift – the drs were out of answers, and we had entered a strange new world of clinical trials and treatment options which presented as many questions as they did answers.

For Ezra it didn’t wind up mattering – his cancer spread so quick we ran out of time to get him on a trial before he died. During that time, though, we connected with Dr Giselle Sholler, who chairs the NMTRC, a national consortium of 18 hospitals conducting some incredible research into both frontline and relapsed neuroblastoma treatment. They also do work on other pediatric cancers. We knew our focus with Because of Ezra had to be research – and we have added a secondary focus of advocacy over the years – as lack of research was the reason Ezra had died. There simply was not a cure.

In September of 2011, we attended our first NMTRC Symposium, an annual meeting of parents, physicians, and researchers discussing the work the NMTRC is doing toward a cure for neuroblastoma. These last few days, we were in Grand Rapids for our 4th year at the symposium, this year with Charles. We’ve made amazing friends, and the research results are groundbreaking and exciting.

The international team Dr Sholler has passionately brought together to kick neuroblastoma to the curb is incredible. This year, over 120 people registered, up from ~70 in 2013. Parents of children with neuroblastoma flew in from the UK, Ireland, and all across the US. In all of Europe, there is ONE treatment option (trial) available for relapsed neuroblastoma patients (and it’s been open only a few months). The NMTRC has 7. There are no options for preventing relapse in Europe, which occurs for over half the nb patients who reach remission. Families like Lily-Mae‘s are exerting huge effort and raising hundreds of thousands of dollars in Europe to fly to the US and be treated on these trials.

In 2000, nearly 80% of children with stage 4 neuroblastoma who reached remission relapsed. That number is closer to 40-50% now. Survival rates after relapse were less than 10%. That number is increasing – with data so new it isn’t yet published. Kids on one of the relapse prevention trials using a drug called DFMO are nearly all avoiding relapse, now almost 2 years from the beginning of the trial. Statistically, half or more should have relapsed by now. These are families we share meals with, cry with, and laugh with. These are kids we hug, high five, and listen to jokes from. Kids like Ashley Burnette, now nearly two years cancer-free, whose mom we met this year, and who Hyundai Hope on Wheels has made one of their two 2014-2015 National Youth Ambassadors.

There are other groups researching a cure, too. We find the NMTRC’s work most promising, and since 2011 have funded nearly a quarter million dollars of research through Because of Ezra, thanks to your support. We’ve also funded work from groups like NANT in Los Angeles, and keep ourselves firmly in the national conversation of neuroblastoma research so we know what is going on. As we grow and our voices get louder nationally and in our own Tampa community, and as our partnerships with like-minded organizations and people increase, we know we will be even more effective. We are a constantly growing fist in the face of childhood cancer.

Every year, we love the NMTRC Symposium, as we get a chance to spend a couple days not only with other parents who “get” cancer, but physicians and scientists who genuinely want to hear our stories, get to know us, and build friendships. It is a powerful group of like-minded people using many different skills to reach a common goal – curing neuroblastoma.

Nearly 5 years after we first heard the word neuroblastoma, we are still fighting. We’ve met so many beautiful people who stand beside us now, and have so many who’ve stood with us since the day we found out Ezra had cancer. Thank you. Robyn and I both are hopeful.

five years ago today, Ezra was born.

just over a month after he turned one, on his 400th day of life, we knew he had cancer.

the day before he turned two, we knew he’d relapsed.

half his life with cancer, half without.

after his 800 beautiful, transforming, fleeting days of life, we had his third birthday at a cemetery.

and his 4th.

tonight instead, we will smile and laugh and dance on his fifth birthday.

Ezra – because of you, we are better.