a story of neuroblastoma, premature birth, loss, and adoptionSeptember 6, 2014
I have watched this over and over again. It is everything I feel.General | 1 Comment September 5, 2014
Because of Ezra | Leave a comment August 30, 2014
“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.”
6 years ago tomorrow, Robyn and I were proud parents for the first time, amazed and bright-eyed to welcome Ezra into our lives. 4 years ago today, Ezra’s neuroblastoma relapsed.
Our friend Kalisha posted a picture of her daughter, realizing she’s a couple months older now than Ezra was when he died. She said “children should be dancing in water sprays and not fighting cancer in hospitals… it’s about providing a way for kids to continue to dance and bring their light and grow up.” We agree. It’s hard to know Ezra will never do that here again.
The truth is, our story isn’t uncommon. Over the past 4 years, we’ve met so many families who know our story intimately, because they’re living it. We’ve laughed and cried with them, shared their stories, and worked hard with you to fund innovative research which is affecting these families – our friends – today.
Robyn and I are personally inviting you to come and celebrate Ezra’s life, and all the kids who are fighting or have fought childhood cancer, at Karaoke for the Kure September 12th in Tampa. It’s a fun evening, with a live band playing karaoke, an open bar (family friendly), and the knowledge we’re affecting change. Ticket prices will be $60 this weekend in honor of Ezra’s 6th birthday, and go back to regular price on Monday.
We miss Ezra every day. Both Robyn and I feel like the work we do through Because of Ezra is a way to continue to be his parents. Thank you so much for all of you standing by us these years – with every child and family we meet battling cancer today, our will is hardened and our hearts are softened.
Happy birthday, Ezra!General | Leave a comment July 27, 2014
We adopted Charles in January, and are watching Charley grow up faster and faster (what’s the rush?!?!) I miss Ezra and Price, and wonder what they’d be doing now. Being a father has made me want to clarify the lessons I’ve learned. If I could give my sons some things to think on, it’d be along these lines. In no particular order.
On the other side of the same coin, someone will always have it better than you. Be proud for them, and strive always to better your self, never to become someone else.
Like the statue in the park
Of this war torn town
And it’s protest of the darkness
And the chaos all around
With its beauty, how it matters
How it matters
The beauty I mean, in life, is the recognition of those things which matter. The things which tug at our soul, connect us to others, and form who we are and who we are to one another. Look for those things.
You yourself have great value as well. God calls us sons and daughters, and goes as far as saying your body is a temple. Pay attention to the things you let in your mind, your body, and your relationships. Be intentional about taking care of yourself and others.
There is so much diversity in the world. In who we are, in how we live, in what we create and in the land itself. Don’t be afraid of what you don’t know. No matter how much you know, there is more to see. Relish this. Pay attention to where you are – be fully present. You can be inspired by the smallest moments.
There is so much more to say, but if you can carry these things you do well. And of course, if you want to know more, talk to your Mom or I anytime.Charles, Charley | 3 Comments July 7, 2014
Charles and I spent the past couple weeks in Uganda…Charles | Leave a comment April 29, 2014
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.Because of Ezra | 2 Comments January 20, 2014
Thank you to Elisabeth Parker from the Tampa Bay Times for her great writeup about our family in yesterday’s Sunday paper! You can read it online at TampaBay.com.Charles, Charley | Leave a comment January 18, 2014
When I was young my mom made what seemed to my brother and I an unprompted decision to make church a part of our lives. I hated it. It was equal parts boring and whacko, and neither he nor I wanted anything to do with it. She didn’t make it a choice though, so we kept going, making jokes and laughing from the back. As months went by, winter approached and my mom signed me up for the church’s annual youth retreat, at Cedar Springs Camp in Lake Stevens, WA.
It was 1995 I believe, so I would have been 13, turning 14 that December – just a few months younger than Charles is today. There was a worship leader named Scott Underwood who was popular at the time, and at the retreat a couple of his songs connected with my teenage heart. The services were held in a temporarily converted gym, and the camp owned a bunch of extra pews which were pushed way back in a corner. I remember long after the 150 kids and adults had gone out to eat and play, I lay in a sea of old pews in the dark, singing those two songs. To this day it is one of the most memorable spiritual experiences I’ve had. They were simple songs:
Yesterday morning, as I sat in the heavy wood chair in Judge Katherine Essrig’s courtroom in Tampa, an incredible young man legally became our son as much as he already was in our hearts. I thought of that moment in 1995, when I had been awed by God’s desire to know me. The magic of adoption stems from the wanting – the peace of knowing you are safe, loved, and chosen. In fact, choose is a synonym for adopt. On January 17th, 2014, we chose Charles, and he chose us.
When Ezra was born, I began to understand what people had told me about fatherhood, and the many parallels between how a father should be to a son and how God is to us. Like many young fathers, I shared how incredible it was to simply sit on the bed or couch with Ezra long before he could even move, just being with him. How I didn’t want him to do something for me, but instead just to want to be around me.
Our journey with Charles started November 2012 when Robyn first saw his Heart Gallery video. In March of 2013 we started our classes to be able to legally adopt a child, in June we met Charles for the first time at his 14th birthday party, and in October he moved in with us. Throughout, we have continued to fall in love with our son, getting to know him and loving him getting to know us. Charles says “my family is weird, and so am I. I fit right in.” He is so right on every level.
After Ezra was born, and we were pregnant with the twins, Robyn and I were sure we had a perfect picture of our family. Charley and Price would be just under 2 years younger than Ezra – 3 boys within 2 years of each other. It did not happen.
When Robyn first watched Charles’ interview, on November 15, 2012, and felt such an immediate, strong serenity this was our son, we almost didn’t believe it could happen either. That our family could feel whole again. Yesterday, that changed.
We quartet of Matthews’ have all felt deep loss, and Robyn and I have cried many times at the hole Charles has had in his life this past decade. No parent should outlive their child – and no child should be without a family. As we move forward in this crazy family, we each need a greater grace. We need forgiveness, acceptance, and adoption. We need each other’s patience and understanding. We know love cannot immediately heal, but is the salve to begin the process. Our home these past months has felt more like a family than it has since we lost Ezra in 2010. Charles is helping to heal our brokenness in the same way I hope we are giving him the love and safety he needs to heal.
Charles Xao Matthews – welcome home. We love you.
~ Mom and DadCharles | 12 Comments November 8, 2013
When I was young, my parents always told me I could do anything. In 31 years, I have embraced much of life. I have felt the fullness of our desire to know and be known, I have marveled at the ways we express our journeys, and I have spent more time than I am told is healthy enjoying the many ways we cook, eat, and drink. I have struggled in my understandings of purpose, faith, and tragedy. And when I say struggle, I am not speaking so much about a problem; more a constant attention. These things are on my mind often – drawing my reflection, clamoring for definition, and at the same time moving me, I think, toward a realization I can never fully answer them. What is faith if it is proven?
Ezra had his first round of chemo before he was able to hold a conversation. He learned to walk while being treated on a national protocol for neuroblastoma, consisting of chemotherapy poisons being run through his body in the hope they would kill the cancer before they killed the rest of him. Of radiating his bones and nervous system to do the same. Of intimately tracking his health to bring him just to the highest strength necessary to be able to do the whole cycle again. And he smiled and laughed through all of it.
Now, three years to the day after he died, most of the tears I cry are for the moments he will never know. I still have a hard time watching a father play catch with a son. Ezra will never taste pasta, or feel small while marveling at the Grand Canyon, or kiss a girl. He’ll never read Tolkien, or Asimov (I love sci-fi), or CS Lewis, or even Rowling. He’ll never drive a car, or get lost while doing so, or run out of gas and have to call me to come help. He’ll never know the sting of embarrassment, or the joy of seeing a baby born. Our world is one he’ll never know.
Ezra taught me a lot more than I ever got the chance to teach him. He was sweet, and kind. He laughed a lot. Every single morning we were home, and many in the hospital, the first thing our family did was turn on his favorite children’s CD, and dance in the living room for half an hour or more. Ezra’s head was always bobbing around to music when it was playing – in the car, in the restaurant, in the hospital.
He taught me we will hurt, and we have a choice how we react. He showed me tragedy is brutal and unfair, and there is great worth in the relationships we make with each other. Ezra taught me we should let go of ourselves often to hold on to someone else. Strength can be shared, and heartache can be too.
I do not think there was a reason for his death. I do not think there was a reason for his sickness. God can find beauty in ashes, and I know of hundreds of stories since Ezra’s death of people whose lives have been touched by his. I will never say these things were reasons for my son to die. I will always cherish that his life has caused such goodness in others.
The cliché is true – life is short. There’s no reason to wait for something to happen – we can simply make it happen. I do believe Ezra’s name will be attached in some small part to a cure for neuroblastoma, which will mean thousands of families who will never have to share our particular story of tragedy. Like the story of the boy throwing beached starfish back into the water who was asked why when he could never throw them all back in – “it matters to this one.”
There is an amazing girl we know and love, who Ezra’s story meant a lot to, and who has done a lot in the pediatric cancer world since his death. Just recently, she mentioned offhand she’d be visiting his grave on his birthday, and wanted to make sure that was ok with us (she didn’t want to break the solitude if we were planning on being there too). We told her of course she could visit, and started to give her directions. “Oh, I know where it is. I visit every Tuesday, and just bring some flowers or a toy or sit and think a bit. It’s my quiet time during the week.” It’d been 2 and a half years since he died.
At least 5 people we know are in medical school focusing on a career in pediatric oncology because of Ezra’s story, including Robyn’s brother.
We have met family after family who have been affected by neuroblastoma, and shared their stories as well. Their names are ones we will never forget; people we love and admire. We’ve built great friendships, shared tears and laughs, and held their kids’ hands. On what would have been Ezra’s fifth birthday, at our Karaoke for the Kure event, one of these friends came whose daughter was treated with Ezra. She is now in first grade, and a beautiful girl!
Our incredible friends and family have cried with us, picked us up out of bed when we’d been there too long, laughed with us, danced with us, sat quietly with us, shared beautiful moments with us, prayed with us, and stood by us when we were not giving back nearly as much as they were giving. As seasons change, I hope very much we can be those same pillars to them.
By the end of this year, we’ll have given over $300,000 to fund research into a cure for neuroblastoma because of the many, many amazing people who have supported Because of Ezra and our continuation of Ezra’s fight.
Robyn and I have changed a lot in the 3 years since Ezra died. One of our strongest commitments to each other has been to never become bitter. It is so easy to focus on your pain enough to make everyone else’s not matter. This morning we shared our story with a couple from Canada we met, and they asked “how do you find such strength with that much sadness?” The answer is a mixture of amazing friendships, faith, and commitment to each other. Strength is hard to feel – the strongest people we know say the same things we always do “I don’t feel strong. I just know who I can rest on when I am too weak to do anything else.”
Ezra – I believe we will see you again one day. It doesn’t change my hurt at all, and your mom and I miss you all the time. I hope you’re as proud of us as we always are of you.
We love you.General | 8 Comments October 29, 2013
Charlie moved in last Friday. We’ve taken to calling him Charles, and little Charley is Charley. I still call the wrong name half the time for both of them. I’m guessing that’ll never change.
It’s been both incredibly rewarding and tiring to welcome a new son to our family, as I suppose it always is. I told someone today, Charles is incredibly bright, funny, and driven – and daily reminds me how much we all need each other and how we’re always struggling for love and peace. He’s been in so many homes, families, and schools these past ten years I am sure it will take him a year or two to even believe we’re with him forever. His case workers already say he’s changed so much in these past months of visiting with us. My hope is as he feels the safety and love in our home, he can move from “living to survive” toward this journey we all seem to be on of learning ourselves and how we should interact with the world and people around us.
The other day I was frustrated. We’d been running like crazy people trying to get Charles in school, and all the details of welcoming a young man into our family, on top of what felt like a million things needing to be done, breaking, etc. One of those days – stretched out to weeks. We were kind of snappy toward each other; everyone was overwhelmed and tired. I was driving to the next place after another busy day of not being able to see my wife and kids, and frustrated.
I know it’s cliché, but I had this moment where I just looked at everything through the eyes of my family members instead of my own. Robyn was stressed wondering if we were doing the right thing asking Charles to enter a school with strict academic and life standards after so long of people expecting less of him (were we putting too much pressure on him? we know how much potential he has), wondering if she was showing him enough how much we care, wondering so many things a mother does about her children. These are deep thoughts – we are in charge of a life now, and what we do has deep effects on the man he will be one day soon. Charles was, I am sure, nervous. He is coming into a completely new home, way of life, and structure – was he behaving right? What was expected of him? Was this another home he’d be leaving soon (Charles – when you read this, no, it isn’t, you’re forever in our family to stay!)? Little Charley, of course, was just happy as could be. We could learn a thing or two from 3 year olds.
One thought came to me, and completely washed away my anxiety and stress.
How can I help?
When I got home that night, Charles was already asleep. I went into his room and said “you know we’ve got your back and are here for the long haul, right?” although he was asleep. I told him again the next day. I went into our room and gave Robyn a hug. I’d left the house in a hurry and a huff, and I’m sure she expected a continuation of that conversation. Instead, I said “I know this has been incredibly hard. I am scared sometimes too, and hope we are doing the right things. I hope our love for our sons will be strong enough to come through the decisions we make to build them into the men we want them to be. I love you.”
It was a powerful moment, and it’s something I’ve tried to do since then. Our entire life lately has been about helping people, both through Because of Ezra and through bringing Charles into our family. And I’ll tell you – the more time I spend figuring out how I can serve someone else, the less my own frustrations bother me. In other words – I find peace through serving others.
I usually like to wrap a better bow on these posts, but in this instance I just wanted to share that moment. It’s a continual thing.Charley, General | 7 Comments