a story of neuroblastoma, premature birth, loss, and adoptionJuly 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 August 31, 2013
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.
Because of Ezra | 4 Comments August 28, 2013
I got an unexpected phone call yesterday.
A friend who I hadn’t heard from in a couple years called me. We talked about nothing for a few minutes, and I asked to what I owed the pleasure of the call. My friend said something like this:
“I wanted to apologize. When you were going through everything with Ezra, it was just too much for us to deal with. Emotionally it was too hard. We simply stopped calling or being around.
When Ezra died, I didn’t know how to reach back out to you. I felt so bad. So I just let us drift apart. I’m sorry. I don’t know if now is too little too late, but I just wanted to say how sorry I am.”
Wow. I was humbled and amazed to get this call. To my friend – thank you for having the personal conviction to say this to me. It means more than you know. I hold no frustration at all toward you, and am thrilled to have got your call.
This isn’t the first person to say this to us (although it is the second). When you lose a child to cancer, you become a member of this unofficial club of all parents who’ve felt the loss of a son; a daughter. Across the country and the world, through the internet, conferences, and our work with Because of Ezra we’ve met scores of families who’ve lost children. We’ve had many, many talks with people who have become great friends, discussing the strange things which occur when your child has cancer – and even stranger things when your child dies.
Over and again we hear the same story my friend told me yesterday – friends stop calling, people stop reaching out. There’s a depth of sadness inherent in the death of a child which shakes a person to the core. Beliefs are challenged, thoughts turn inward; people get reflective. For many people, like my friend, it’s just too heavy a burden to be constantly reminded of.
And yet, here Robyn and I are, living it.
We now carry an understanding of personal tragedy which is part of our cores. And it’s odd to me to think how heavy our hearts often feel, then think about our great friends Mike and Deb Gilbert in Uganda, who work to help a culture where a 50% mortality rate in children is simply the norm. We are blessed even in these losses.
People tend to do one of two things after losing a child – they become passionate about working to make sure this doesn’t happen for someone else, or they become passionate about getting very far from it. Teju Cole said “if you’re too loyal to your own suffering, you forget that others suffer, too.” That sentiment drives us to fight back against neuroblastoma, which we do through Because of Ezra, our non-profit.
And guess what? People don’t get on board from the sad stories. There are many studies showing (and our own experiences have echoed these findings) sad truths simply drive people away. You may get a donation from guilt, but then people are out. We don’t want to be reminded of suffering. I have to craft everything we say through Because of Ezra to be hopeful, always hopeful. Skip the tears, because everything is fine.
To be fair – there is hope, which is the thing; it’s the reason we even do it. The work we’re doing is helping, and we can see it in the families and children who are on the trials we’re helping to fund. But I’m saying I don’t want us to forget something:
Things aren’t always fine.
When your heart and head are overwhelmed by the suffering of another, tell them. Say just that. “My heart is overwhelmed by all of this. I don’t have anything to offer, this is just so much.” We feel it too, in those moments. I mean, still, we feel it now. All the time. And our life today is great, though it’s built on a foundation of love and passion mixed with pain and hurt. The hard parts don’t go away just because they happened a while ago. Like I’ve mentioned – don’t be afraid to talk to us about our sons who are no longer here. We certainly haven’t stopped thinking of them as our family.
There’s this tendency people have not to acknowledge emotional pain, or to only do so indirectly by pointing out the good that came from the hurt. Maybe we were told somewhere along the lines that’s the correct way to do it. It’s not. On the flip side, it also doesn’t help if every conversation is wailing and depression personified. A simple acknowledgment of “wow, that must have been so hard” is enough to tell me you get it and are with me. If I want to chat from there I’ll lead it that way.
It doesn’t help if I say my kid had cancer and your first response is to list the good that came from it. As if these are reasons he had to die. When in truth (and this is slightly just semantics, but important ones), those good things happened because we decided to push through the pain and do something to help those who will be facing this tomorrow, or the next day. A flower blooming in a lot after a home burns down doesn’t negate or bless the fire; it just proves beauty can come from ashes.
Ignoring each other’s hurt has a devastating side effect – it makes us think we shouldn’t be feeling it. Suddenly the person hurting feels they’re the outcast – this most painful thing happening to them is awkward for others, and so they bottle it up. Brush the dirt under the coffee table; flip the couch cushion over to show you the good side when stuffing is falling out underneath. Rather, I’d ask you this – when your friends are hurting, don’t be afraid to approach something which is hard to hear or talk about. These are the moments you are truly caring for someone. It matters. It may hurt, but you may be surprised the compassion it begins to open in your life.
To my friend who called me yesterday – thank you. I realize I spoke a lot about the subject here, and I want to clarify it’s not just about you. Many people feel that same thing, and most never acknowledge it. I’m glad you did.General | 12 Comments August 27, 2013
Back in July I mentioned we’re adopting from foster care. This entire time we’ve had a specific kid in mind who really stole our heart, and we’re proud to say we’re now officially moving forward with adopting him!
His name is Charlie. Kinda like how some of you spell our other son’s name – Charley.
And he’s amazing!
Our good friend AJ Hurley is a master of all things film, and interviewed Charlie a while ago in a piece he put together for the Heart Gallery, a great organization in Tampa (well, nationwide) who photographs and videos children in foster care and lets the community know there are kids in our own neighborhoods needing families, love, and a home. Jesse Miller, who is pretty much a sister to us, runs the Heart Gallery here in Tampa and was the driving force behind making these videos happen. Another good friend of ours, Dan Weisberg, is the voice you hear. Ever since Robyn saw Charlie’s video, she knew we would be his parents.
You’ll have a chance to get to know Charlie more as we spend more time with him. We are excited and blessed to be able to take this step forward in our life and in his. We know it will be work – family always is! Already we know Charlie is much like us – a funny, smart, amazing person who has experienced loss and tougher life events than many. We feel a kinship to him, and are looking forward to continuing that relationship.
We’ve started visits with Charlie, and the timeline until he moves in with us is not definite yet. We are really enjoying this time of getting to know him. Feel free to pray for us and him as our family continues to grow!Charles, Charley, Pictures | 23 Comments August 8, 2013
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.
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.Because of Ezra, General | 2 Comments