Because of Ezra

There are 20 posts filed in Because of Ezra (this is page 2 of 2).

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.

Giving Away $100,000 in 2012

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Today marks the day we’ve been without Ezra as long as we were with him. 800 days from the day he died, after living exactly 800 days. It’s a strange day for us.

We thought it would be fitting to do Because of Ezra’s giving for 2012 on this day – this is only something we could have done Because of Ezra. So this morning, Robyn and I presented a gift from Because of Ezra in the amount of $75,000 to the neuroblastoma work being done by Dr Giselle Sholler at the Van Andel Institute in Grand Rapids, Michigan. Our gift was matched by an incredibly generous local family trust, meaning the total gift will be $150,000. This is specifically to fund a trial using DFMO, an investigational new drug which prevents relapse of neuroblastoma. We personally know many of the children on this trial, and it’s a drug which has no significant side effects, and so far has been extremely effective. 50% of children who fight neuroblastoma to the point of no evidence of disease relapse – and there is no current cure for relapsed nb. Preventing relapse would be a huge accomplishment. Dr. Giselle Sholler received the gift along with the CEO of the Van Andel Institute, David Van Andel.

We are honored to be able to contribute to work which is making a huge difference in children’s lives who are fighting the disease Ezra died of. In all their names, and from the bottom of Robyn and I’s hearts – thank YOU for supporting what we’re doing Because of Ezra. We couldn’t have done this today without all your support raising awareness and funds. Our board members Marissa Devins, Erica Copeland, and Derek Pupello (and their spouses) all deserve a huge thank you as well – they are incredible people who make doing all this easier, and we are so grateful to have them on board. They are also amazing friends.

Late in December, we also supported the work being done by Dr Robert Seeger and the team at NANT in Los Angeles, with a $25,000 gift. NANT is doing some great work, including a study on the biology of neuroblastoma, and we’re honored to support them as well.

Through your help Because of Ezra was able to give $100,000 in 2012 to researchers, physicians, and scientists making a difference in survival today for children fighting neuroblastoma. Thank you, thank you, thank you.

Robyn mentioned raising awareness and giving toward a cure is a way for her to continue being Ezra’s mother – to keep honoring his name, to keep fighting the fight he started for us. We know the hurt neuroblastoma brings to a family, and to be able to take that away from someone in Ezra’s name has so much meaning for us.

We look forward to doing even more to cure this horrible disease in 2013 – and telling more people about the need, the fight, and the ways to cure this. It is possible, and with people like you helping us, we know we can do this.

Thank you.

 

Brooke Hester, and Christmas

I hope the holidays are going well for everyone. I wanted to share the latest 800days video which we published today. Robyn and I visited Grand Rapids a bit ago with AJ and met Brooke Hester and her mom Jessica. Brooke is a spunky little girl, and Jessica is such a passionate mother. We had an amazing day with them, and are grateful they shared their story with us. Please watch and share the video, and consider a Christmas donation to Because of Ezra to help us cure the beast that stole our son from us.

We decorated our Christmas tree this year all in gold, the color of pediatric cancer awareness. We even topped it off with 50 gold Because of Ezra bracelets. It felt weird to pull our Christmas stuff out for the first time in a couple years. Ezra was born August 31st, 2008. That year, 2008, we had a small Christmas in our apartment in Tampa with our firstborn son, Ezra. He was 4 months old. We were a young family starting our lives, and everything was perfect. It felt magical. We sent out Christmas cards for the first time.

October 4th, 2009, we took Ezra to the emergency room. 2 days later he was diagnosed with stage 4 neuroblastoma. October 10th we found out Robyn was pregnant. By the 20th we knew it was twins. We spent Christmas 2009 in our newly purchased home, and 3 days later went back to the hospital for round 4 of chemo. That Christmas was great – a lot of love. The Children’s Cancer Center in Tampa overflowed Ezra’s room with donated Christmas gifts. It was a year of hope, and a year of the unknown.

March 15th, the twins were born. We named them Price and Charley. March 22nd, Price died. I held Robyn in my arms, as she held Price. October 1st, after 192 days in the NICU, Charley finally came home. On October 12th, we left Charley at home with his nana, and headed to Orlando with Ezra. I posted a blog about faith and doubt, sharing some of the struggle we were feeling. November 8, 2010, Ezra died. I was so empty by then, everything felt the same. I could feel nothing, because I was feeling way too much. A generous person flew us to Greece, where Robyn and I stayed for 10 days with no outside contact, and I think that trip may have saved our sanity, and our marriage. We mourned.

We came back just before Christmas 2010, and spent it at home with people we loved. We didn’t decorate. I think there was a tree, it must have been set up by Robyn’s mom, but to this day I don’t think I know where it came from.

Last year, 2011, for Christmas, it hurt too much to do anything. We bought Charley some gifts, and headed to Seattle to spend the holidays with Robyn’s parents. We let them handle the festivities. The overwhelming feeling was of something missing. We had had 3 children, and one was with us that day. It’s not a feeling which one knows what to do with, really.

As 2012 closes, it is strange to look back at where we were a year ago, or two, or three, or 4, and fast forward to now. We have rebuilt our family to something which is strong as a whole, although often we find our individual selves weak. I lean on Robyn all the time, and she on me. I still ask God for direction, although I sometimes find it hard to trust Him. I am trying.

Charley knows we love him. I wonder how all this will process for him later.

There’s a tree in our front room, and I climbed up the oak trees in the front yard a couple weeks ago after my 31st birthday, and wrapped Christmas lights all around them. When the sun goes down, the lights warm the yard and the house with a Christmassy glow. Still, much of it feels like rote.

This year we’ll be surrounded by family and people we love for Christmas. I’ll probably wish you a Merry Christmas here that day. But I’ll tell you – it’s hard, every year. It doesn’t feel right. Our sons were stolen from us, and we love and live as a family continually putting itself back together. I know some of you are, too.

Love you guys. Ezra – we miss you. Merry Christmas.

800 days – Dave Matthews

Dave Matthews – 800DAYS from Because of Ezra on Vimeo.

Yesterday was the two year anniversary of Ezra’s death, and we launched our 800days project in honor of the days he lived on earth. I thought it’d be fitting to share with you where we got this whole 800days realization from, and the inspiration for the name.

The following is a transcription of the eulogy Dave Matthews delivered at Ezra’s celebration of life service November 13th, 2010 at Grace Family Church, Tampa, FL, seen above. This talk was the naming inspiration for our 800 days campaign – please take a look and share with anyone who’ll listen. Dad – we love you, and Ezra did too.

I guess I believe that a eulogy should be like a good sermon – it should have a brief introduction, a short conclusion, and they should be close together.

So give me about 5 minutes, because I only wanna say 3 things.

First, I wanna say a very special thanks to all the friends of Kyle and Robyn – many of whom have become close friends of mine – who have labored and struggled so hard for so long to help them in this battle. I think that the true test of friendship was proven over and over, by so many of you who stood by my family for 14 months straight. Never wavering, never straying from their side. Never complaining or tiring of any of the constant need for anything that this kind of battle demanded. Always supporting them emotionally… physically… through a campaign that could easily have destroyed friendships built on lesser love.

Lindsay. AJ and Mandy. Larry and Kim. Mike and Deb Gilbert. Derek, Kalisha. Joy Adcox Sutton – there’s a reason your face is on billboards. Abby, Kristin, the whole Bonham family. Paige… and I could go on and on and on. And those were just the hands that were close. Not to mention dozens – literally dozens – of total strangers that came to the door of my family’s house when I was there, and I would say, who are you? And they’d say… does Ezra Matthews live here?

And there were the hands that were here, but there were also the hearts that were far away. Josh. Jordan. Nate. Leah. Jason, Jacob, everybody – from around the world.

Hundreds of names that time simply won’t allow me to mention.

This is a celebration of life, and so I’m gonna ask you today to clap your hands for the kind of friendship and love that we’ve seen and endured today.

Two. I haven’t slept well for the past few months – and some of you are probably thinking, duh. What with Ezra’s cancer. But what has kept me awake at night has not been that so much as it has been awe. A-W-E, awe.

I lay awake at night in awe of the strength that Kyle and Robyn have demonstrated. At the mantle of maturity way beyond their years that they’ve been forced to assume, and took so gallantly and bore so greatly. You’ve been an example not only to me, but to thousands of people around the world. And your faith in your God has never wavered even in this deepest of possible pains. And I say to you now that no parent has ever been more proud of his children than I am of you two today, right now.

When I grow up, I want to be Kyle and Robyn Matthews.

Third. What about my grandson?

800 days.

His name, in one number.

That is the time with breath given to Ezra David Matthews.

Robert Fulghum said “I believe that imagination is stronger than knowledge. Myth is more potent than history. Dreams are more powerful than facts. Hope always triumphs over experience. Laughter is the cure for grief. And love is stronger than death.”

800 days.

In 60 years, I have seen many people come and go in my life, some permanently. I tell you now that there has never been a loss that has been felt so greatly.

In life there are lights, there are shadows, and there are darknesses. Ezra’s light – Ezra’s light was a beacon that called to every face he passed. Like Will Rogers, he’d never met a stranger. Even people who didn’t like kids would stop and talk to Ezra.

800 days.

Now, just the tiniest of memories loom large. In my bedroom there’s a guitar stand, and every time that Ezra would walk in there he would go over there and he would pluck those strings. Then he would dance a little jig and turn in circles until the echoes died away. He’d go pluck ‘em again; he’d do that over and over – sometimes for a half hour at a time, never stopping. Just laughing and dancing.

His dad taught him to ROAR when his mom would hold a little dinosaur up in front of him.

It was the kind of spirit that was displayed in those small things that he carried into his life that touched, touched literally hundreds of thousands of people.

And he did it in 800 days.

You know, I never had a chance to teach him to shoot a free throw. Never had a chance to teach him to throw a curve ball. Never taught him to read the grain on a 14 foot putt, but I can’t do that anyway, so…

But he taught me. He taught me to love again, he taught me to live again, he taught me to focus on the amazing little things in life. Like a stick whipping into a pile of leaves or an ant in the crack of a sidewalk. Or watermelon. Vanilla ice cream. He taught me to laugh again, get back in touch with the humanity that I had begun to miss in my life.

Shortly outside you’re gonna run into my family again. You’re gonna want to talk to us about somber things – but don’t. This is a celebration of life. He laughed his whole life.

So don’t be afraid to laugh with us even today when you’re shaking my hand or my wife’s. Or you’re hugging Robyn, or maybe you’re giving a chest bump to Kyle.

Don’t be afraid to pass along a laugh – because laughter is the cure for grief.

Today when I think of Ezra I smile. And now even with laughing memories I well up inside with tears, even when I smile. I find myself lying in bed at night with tears in my eyes. I find myself staring at a computer through a veil of tears.

I was a captain of Marines. I was once a leader of warriors. And I tell you now Ezra was a warrior, he was God’s warrior. He carried his message, and through the internet via his father, he carried it to literally over a hundred thousand people in 40 countries. And he did it with laughter.

He laughed through cancer. He laughed through pain. He laughed through life. He laughed through 800 days.

But Ezra will live on. As Emily Dickinson said, “unable are the loved to die, for love is immortality.”

But Ezra can’t speak now, so I will leave you with one more quotation. Speaking what Ezra can no longer speak, but saying what he demonstrated for 800 days.

Courage doesn’t always roar.

Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow.”

So from November 8th, for the rest of my life, I will simply say…

801…

802…

two years

Two years ago today Ezra died.

The house still feels wrong without his voice. I sat in my office the other day and watched this video for 30 minutes on loop, crying and laughing. I miss hearing his voice.

You go through a lot of feelings when you lose a child. Then when you lose one again. Then when your remaining, third child, lives in a hospital for 7 months and fights like a madman to finally, after a year, breathe on his own while he sleeps.

We’ve been angry. We’re still angry; at cancer, at us not having enough research yet to cure this, at a world where this can happen to so many families, sometimes at God.

We’ve been sad – a deep, arctic sadness. Vast, cold, lonely… simple and sharp in its pain and so very cruel for that. It hides more as we get further away, but it’s never gone.

We’ve been grateful – for the time we had with Ezra, for all the photos, videos, and stories you and we share about him. For friends who make all the difference. For the incredible people we’ve met these last two years. For you, for reading this.

We’ve felt despair. Moments where the weight of feeling all of this is just too much and ‘overwhelmed’ seems like a word kids use when playing trains compared to the crushing depths our minds get worked up in.

We’ve been impassioned. Working on Because of Ezra we keep meeting these amazing people, some who’s kids are fighting neuroblastoma right now. Some who’ve lost children. Some who’ve beaten it. Some who haven’t had neuroblastoma’s evil hands on their family, but have connected with these stories and are fighting now with us.

Ezra lived 800 days. Robyn says they were the best days of her life. People say that all the time, of course, but I know they were for her – I’ve never seen her so perfectly happy as she was with Ezra.

One thing we’ve been doing in Ezra’s name is creating these videos to tell the stories of children like Ezra, who are fighting neuroblastoma now. We call the project 800days (800days.org), in remembrance of Ezra’s life. We’re doing this through Because of Ezra, and meeting these families has been excruciating and empowering at the same time. We’ve met families like Caden’s, Malia’s, Brooke’s, Emily’s, and Christopher’s. It is such an honor to be able to do this. It is an honor to tell these kids’ stories, to continue Ezra’s name on such an amazing way to fight; to work with people like Mindy Kaling who have been graciously pouring in support. Please – take a minute today to look at 800days.org and share the videos there. This is something we do Because of Ezra, and it is making a difference.

Robyn and I had a conversation earlier today about how telling these kids’ stories and working on Because of Ezra feels like a way of keeping Ezra alive. It’s how we keep his name being spoken, know his life is still affecting change, and feel like we are still being his parents, looking out for him. Telling stories like his, and fighting to stop this stupid cancer.

In January, day 1601 will happen. It will be more time since he died than his entire life. In 800 days, Ezra changed us forever. He is, and will always be, our first-born son.

I wish he was here this morning.

a family of fighters

Been a couple months since we posted here.

Much is the same, and we move always forwards. Abby left yesterday for her internship at BigStuf, and we and Charley miss her already. She and Charley went to Build-a-Bear last week and she made a bear with 6 hearts… Kyle, Robyn, Abby, Ezra, Charley, and Price. When you press the bear it has a recording in her voice talking to Charley.

Charley recently had eye surgery on his left eye, and it looks SO much better! Check out this photo – before is on the left, after on the right.

He doesn’t yet eat by mouth, nor does he say anything more than dada and mama and buh-bye. He’s making progress slowly and surely though. We’ll be getting leg braces for him soon (he’s already been fitted) to help him learn to walk. Right now he just tiptoes everywhere because the muscles are so tight – and he can’t learn to walk that way.

We still miss Ezra every day. It hasn’t gotten any easier, really. Robyn read somewhere and has been saying it’s moved from our skin to our bones. When you start out with this pain, it is visible instantly – you see it when you look in the mirror, you feel like your words aren’t real, you wonder if you shouldn’t just stay in bed all day and watch TV or read a book. It’s difficult to be happy.

As you move forward (it’s been a year and a half or so for us) the pain moves deeper, off your skin and into your bones. We smile more, but it often feels like there’s weights on the corners of our mouths. It’s a joy which knows life is full of tragedy. I can’t seem to go a day without coming in contact with another family who has lost a child to this cancer, especially as we have been beginning to focus on building up our Because of Ezra organization. What used to be a life of mine and Robyn’s goals and likes has become a battle and a realization pain is everywhere. I’m not saying we can’t smile – we do every day. I just look at people different I guess. More patience for the messed up folks. Less patience for the folks whining about silly things. Much of life is so trivial, yet we place the highest importance on these stupid things like a minor difference of opinion or onions on our burger when we ordered it without them (which I’d never do).

We just got back from the 2012 NMTRC Symposium – a 2-3 day get together of the most amazing people fighting neuroblastoma today. Please, read and share that blog post about what went on. I hope you know neuroblastoma didn’t just stop when Ezra died. We’ve also set up a new series called “This Week in Neuroblastoma” (#twiNB) where we’ll be highlighting some of the past week’s nb happenings. It’s constant. Please read them – the fight is not over, and we are doing all we can to kick neuroblastoma in the face.

I hope things are going well in your life. You made walking through (well, stumbling I guess) Ezra’s treatment just a bit easier. Knowing you guys were on our side, hearing your comments, seeing your support… it strengthened us to know we weren’t alone. I know we still aren’t. We’re fighting every day. Thank you.

events and news

Hey there!

Since we don’t yet have our news and blog section up on BecauseofEzra.org, I’m sharing with you here about what’s going on. Hope you don’t mind. 😉

We just got back from LA yesterday, and had some great meetings with people we’re incredibly excited to be partnering with in Because of Ezra. We have some really cool big events planned for this year, from coast to coast. I’ll continue to share as we get more details secure, but man are we excited. It’s looking like we’ll be able to really affect this horrible cancer.

Speaking of events – if you live local, you can help out this coming Thursday just by eating! A really cool couple of young ladies named Savie and Molly called up Red Elephant here in Tampa (near Dale Mabry and Bearss) and for anyone who eats there (or takes out) this Thursday (the 27th) and mentions they’re there Because of Ezra, Red Elephant will donate 15% of their ticket to the foundation. Savie and Molly also sold bracelets of their own accord at their school late last year – thanks, girls!

We’re still planning on running the Gasparilla Distance Classic in February, check out our last post for details – we’ve got the t-shirt designs in and finalized – check it out:

See ya around…

come run with us, and other updates

Thanks to our good friend Mandy we’ve now officially entered our first 5K run to benefit Because of Ezra (among others). If you live in the Tampa area, come out Saturday, February 26th for the Publix Gasparilla Distance Classic run. Most of us will be doing the 5k run – but if you’re not a runner don’t let that discourage you! They also have a 5k walk, and even a 5k stroller walk. They’ve also got longer runs if you’re one of those crazy runner folk. Since we’d love to get a ton of folk out there running to support Because of Ezra, anyone who donates more than $25 to Because of Ezra during the registration process will get a free tshirt to wear race day! We’d love to see lots of people running with BoE shirts.

When you register for the race (which costs $25) through this link, there will be an option to choose if you’d like to ALSO donate to a charity. Choose Because of Ezra, and if you give $25 or over, let us know your tshirt size and we’ll have one for you a few days before race day! You’ll need to either Facebook us or email us using the contact link on the right of TheMatthewsStory.com or on BecauseOfEzra.org. Some have asked if it’s better to give directly to us than through the registration process – if you are actually planning on doing the race, then no, it doesn’t matter. The run doesn’t take any percentage out, so 100% of the charity donation you send to Because of Ezra comes to us. The $25 registration fee of course goes to the race.

In other updates… well, there’s so many. We’ve been busy little bees, trying to work as hard as we are resting. Charley is doing great, he has grown so much, and he is developing well. He’s a stubborn little boy with a hidden smile, but he shows it if you work for it. 🙂 Our nursing is most likely going to be cut back from 24 hours to 8-12 (daily) at the end of this month, and so Robyn will be working even more with him. We’ve been blessed to have had this coverage the last few months – they were rough times for us, and the nursing coverage was so appreciated. Things are still hard mentally and emotionally, but we are gathering ourselves together best we can. Life doesn’t seem to take any breaks.

Because of Ezra is shaping up very fast – we’ll be in LA in 2 weeks to meet with the folks of NANT, as well as some folks we’ve been emailing quite a bit who it looks like will be a big help in this adventure. We’re working on a lot of new content for the website (becauseofezra.org – btw, are you our friend on Facebook? 😉 you totally should be…), and shaping up some very cool things for the rest of this year. Lawyers, doctors, and volunteers – oh my! We’ll try to update here as well as through the Because of Ezra Facebook page as we schedule more things – but it’s an exciting time. We will be effective at pushing awareness and funding into this cause. Did you know of the money the US government puts into cancer research, less than 3% goes to pediatric cancer research? ALL pediatric cancer? Drug companies don’t do much either, as pediatric cancer is much less profitable than adult cancer. Wow, huh?

That’s enough for now… there’s so much to share, but I’ll let you know more as we get everything more solidified. I miss Ezra every day, and we are committed to doing all we can to stop other families from having to feel this.