footage

Ezra Matthews

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

Begin Again: Why I’m quitting the tech company I co-founded and going full time against childhood cancer.

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.

Ezra MatthewsWe 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.

Ezra Matthews

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.

Because of _____

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.

Because of Ezra

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


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.

Ezra Matthews

$215,000 raised in 2015 Karaokes for the Kure, beautiful evenings

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.

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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.

Brooke Hester

Brooke+Mom

 

Brooke

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.

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Karaoke event folks sing for a cause: pediatric cancer

“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.

fighting cancer 5 years later

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.

nmtrc

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.

5

ice cubes, in there

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.

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ezra’s fifth birthday would be august 31st

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In a few weeks, we were supposed to have a 5 year old.

Less than an hour before his September 1st due date, on August 31st, 2008, I held my first-born son for the first time. I remember laying Ezra on Robyn, thinking I was supposed to let her hold him first. She was so worn out from labor she looked at him, smiled, and instantly fell asleep. I looked at the nurse, who smiled and told me to hold him. That moment, sitting in a chair, covered in blue paper scrubs, my eyes red from lack of sleep, I just stared at Ezra. It felt like forever – Robyn had birthed this child. Our child. We had created life. It was one of the most profound moments of my life.

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I wrote here on what would have been his 3rd birthday, as well as his 4th. I even wrote here on his 2nd birthday, inviting you all to his party. A lot of you came. It was an incredible night, with so many of our friends and supporters showing their love to Ezra and us. Ezra died less than 3 months later, and we have so many beautiful photos from that 2nd birthday party.

August, like November, and like March, are difficult for us. Ezra was born the day before childhood cancer awareness month (September), and every year we wonder all August what we should be doing to remember him on his birthday. And what we should do to honor him for the month of September, and all the other kids fighting cancer still. The last two Augusts we visited Ezra’s grave, and spent quiet time with friends. It was good.

This year for Ezra’s birthday we are once again inviting you all out to a big party – this time instead of celebrating Ezra’s health like we did when he turned two, we are celebrating the children who are fighting neuroblastoma still, or will be. We’ve put together a fun karaoke party (with a live band backing up the singers) in Ybor City, on Ezra’s birthday, with all money raised supporting research into a cure for neuroblastoma. You should come.

We are busy working on adoption as well, with an official “match” coming up next week. I’ll write a whole separate post on this when details are more ironed out. We are excited about our future, as our family once again is growing. If you’ve ever considered adoption – look into doing so from foster care. There are hundreds of children just in Tampa who have no families, and while we know it is going to be work, we couldn’t be more excited to welcome a new child into our family.

I don’t know if an event on Ezra’s birthday is perfect or foolish. I know we love making a difference in Ezra’s name for kids and families still in this battle. I know Ezra loved smiling and dancing and laughing more than anything. So in some ways, I can’t think of a better way to remember him. I also know every smile comes with a pang of grief, realizing all the reasons behind Because of Ezra. I have to believe we can make a difference, and we won’t ever give up. If you spent the time Robyn and I do meeting, praying for, crying with, and laughing with families who have children diagnosed with neuroblastoma now, you’d realize our story is everywhere. Being repeated, re-lived, re-felt. Just with different names.

I miss my son. Every day. It’s been nearly 3 years, and it doesn’t get any less painful. We try to turn the pain into passion, knowing if we aren’t helping people, we aren’t living the lives we want to live. The lives we want to model to our children.

You all mean a lot to us.

karaoke for the kure – oh it’s coming soon

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So last year with Because of Ezra we did a brilliantly fun event in Beverly Hills – live band karaoke. Our amazing team raised over $110,000 toward a cure for neuroblastoma, all in Ezra’s name. It was such an incredible thing to be a part of – so this year we’re doing it in Los Angeles AND Tampa!

Tickets are available at becauseofezra.org/k – you can easily pay online (or by check if that’s how you roll). We also do still have some sponsorship opportunities open for the Tampa event. Please invite some friends, get your tickets, and support a cure. I promise you’re going to have a fun evening.

You don’t have to sing, but you can bet it’s going to be a fun party, at the Ritz in Tampa (Ybor City) and the Troubadour in West Hollywood. Tickets are $75-100, and include some food, karaoke with a live band (all the way from Seattle!) backing you up, open bar, and a general all around good time. It all benefits Because of Ezra – you’re helping us to keep fighting neuroblastoma in Ezra’s name.

Robyn and I are excited to see everyone out. In the past year we’ve spent a lot of time meeting the kids and families who are actually being treated on the trials you’re helping to fund through Because of Ezra, and it breaks our hearts and gives us intense joy all at the same time. Seriously – this is making a difference. The research and forward motion in treating neuroblastoma just since Ezra died in 2010 is inspiring. We are so proud to be a part of that, remembering Ezra always and helping to stop this from happening more.

Thanks, see you all at the events!

What’s Going on in Neuroblastoma Research – 2013 NMTRC Symposium

NMTRC Symposium 2013

The NMTRC (Neuroblastoma & Medulloblastoma Translational Research Consortium) is a group of 18 universities and children’s hospitals headquartered in Grand Rapids, MI which offer a nationwide network of childhood cancer clinical trials. The group is chaired by Dr Giselle Sholler. These trials are based on the research from a group of closely collaborating investigators who are linked with laboratory programs developing novel therapies for high-risk neuroblastoma and medulloblastoma.

They’re one of the groups Because of Ezra supports financially under our mission of funding relevant, patient-affecting research into a cure for neuroblastoma. The NMTRC hosts an annual symposium, where the members meet to discuss the previous year’s work and future directions. The 2013 symposium was this past Monday and Tuesday (May 6-7) at the Wyndham hotel in Lake Buena Vista, Orlando, FL. Video will be on YouTube within the next week or two (and we’ll mention when it is), but we wanted to share some of the experiences here first.

The NMTRC is unique in the level of community between the physicians, scientists, and families (both in treatment, out of treatment, and those running foundations). We largely attend the same presentations, dinners, and have structured open conversations about the work being done. The depth of collaboration is refreshing and inspiring. When you have parents whose children are ON a trial participating in the same conversations as the scientists who proposed the trial, the organizations funding it, and the physicians carrying them out… it’s an incredibly effective synergy.

The work being done is truly remarkable – the first ever FDA approved personalized medicine trial for pediatric cancer, preventative trials to reduce the rate of relapse (in this case with a drug called DFMO), immunotherapy, and more. One of the most interesting presentations was by David Krag, MD, who is the SD Ireland Professor of Surgery at the University of Vermont (yes, he said, surgeons do science, too!). Titled Personalized Antibody – Timeline to Clinical Impact, Dr Krag discussed an exciting method of harnessing the body’s own immune system to create personalized antibodies specifically for an individual’s neuroblastoma tumor. It should be going to trial this year.

Personalized medicine is a concept at the core of what the NMTRC is doing. It has the huge benefit of being much less toxic (and much more targeted) than the standard chemotherapy regimens currently prescribed for neuroblastoma. These current standards are not effective (survival rates for stage 4 neuroblastoma hover at 40%, with relapsed neuroblastoma still having no known cure), and include rounds of treatment with what physicians call “kitchen sink chemo.” Partnerships between the NMTRC and the Translational Genomics Research Institue and Dell have pushed forward much of this work by analyzing individual patient’s tumors to find treatment options specific to their disease.

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We got to spend some great time with non-profits also working toward a cure for neuroblastoma – and families who are battling it now. Some of the children represented included Will Lacey, Melina Riniolo, Brooke Hester, Saoirse Fitzgerald, Abigail Goss, Daxton Blanford, Chase Ringler – and there were even more. These children are each reasons we fight, and reasons why continuing the battle against neuroblastoma is so very important. Neuroblastoma CAN and WILL be beaten – and it is going to take time, passion, awareness, and funding. We are so, so, so, so grateful to have your support in making this a reality.