a story of neuroblastoma, premature birth, loss, and adoptionNovember 18, 2014
Let’s talk about Charley.
This kid is 4 months shy of 5 years old, and an absolute joy. If you say “cheese!” he drops everything and poses with the biggest grin you’ve ever seen. He tickles back. He gets back up after every fall, and he falls a lot. Unless there’s a bump on his head, on his way back up he’s smiling and determined. He’s got stronger abs than I do.
Charley has had, when compared to other kids his age, a tough coming up. He spent 7 months in the NICU at All Children’s in St Pete (we love you, ACH!), and was on oxygen for another 5 months when he finally did come home. We barely went anywhere with him – it required lugging an oxygen tank connected to his face with a tube and a nasal cannula, and we spent more time explaining than doing anything else when we were out. Not to mention having the entire attention of every single person we passed.
He didn’t eat for years by mouth, and still has a MIC-KEY button on his stomach and gets his feeds pumped in. He’s getting better now – having his tonsils removed helped this year – but the doctors think it will be another couple years before he’s fully eating by mouth and can have the button removed.
Charley’s legs hurt all the time. He’s got mild cerebral palsy, which causes tightening of the muscles. Luckily for him, he retains most of his muscle flexibility, but his legs are the worst. He’s learning to walk still, at 4, but it’s made tough by how tight those muscles are – he has to walk everywhere on tip toes. We’ve tried leg braces, but are now looking into Botox injections into the muscle to calm it down. Apparently it works well. If it doesn’t, in a year or two he may need surgery to help keep those feet flat. We’re hoping to avoid that – and you can see he’s walking much better and farther than ever.
Still, Charley smiles constantly. He is behind in many ways, but not when it comes to joy. He dances when music comes on. He’s singing along now, and loves to shout from the back seat which direction he wants us to turn at every red light. When a truck stops in front of us, Charley yells “Go around it!” He takes pictures of himself on every iDevice he gets his hands on, and then closes all the apps out by double-clicking the home button and swiping up on all the open apps.
He laughs a lot. Robyn knows his ticklish spots, and gets him every day. He will laugh for a good while then say “stop it!” He can tell you what color our cars are by memory, and knows the directions to Rocket Fizz – our favorite local candy store. He loves Mickey Mouse, Buzz Lightyear, and Magic School Bus.
We have learned a lot from Charley these nearly 5 years. He, like us, smiles through pain. He is strong and caring and curious, and determined despite constant frustrations his own body forces on him. He knows other kids are walking better, and you can tell the days it’s frustrating to him. Still, he gets up every time he falls, and asks for help or tries again.
He helps mama brush her teeth, and is starting to make jokes (although I don’t think he always know they’re funny, ha) and “say the darndest things.” Some of my favorite moments with him are Saturday mornings cuddling on the couch watching a movie while he’s getting his morning feed. Or watching him wrestle our boxer, Jack, who is the picture of patience and the perfect dog for a 4 year old. When Charles moves back in, I am sure the two of them will continue to have a great relationship like they have had.
Robyn works hard on Charley – he is a lot of work. Though he makes it a pleasure to do, he requires hip x-rays, neurosurgeon updates (for the shunt in his brain which will stay there for life), gastroenterologist visits (to check his MIC-KEY and how he’s eating), swallow studies, physical therapy weekly, speech therapy weekly, occupational therapy weekly, eye dr appts, and a host of other specialists and professionals helping us get him caught up. He may never be the fastest runner, but he will be the most determined. Our team of care professionals seem to think by the time Charley is 7 or so, you won’t be able to tell he was any different than other kids. Well, as far as development goes – obviously he’s much cooler. It used to be hard to believe that – he seemed so far behind. But lately, we’re constantly amazed at what he knows and how much he’s growing. He’s going to continue being incredible.
You deserved a glimpse of the boy Charley has become, and is becoming. Robyn texted me earlier saying “it’s time for another Charley update!” She was right. Charley is a smile and joy. We love every minute of growing with him.Charley | 14 Comments November 8, 2014
Right now, four years ago, I just wanted sleep. Ezra died just after 2am, and we left the hospital by 4. We were in our bed in Tampa by 6. Eight months before, we’d lost Price. Charley had come home from 7 months in the NICU just 30 days before Ezra died. We were tired.
Robyn and I had no clue how to be. We still don’t, i guess. We build our lives because hey, time’s not stopping. We work to change Ezra’s story for the next family. We answer the “how many kids do you have?” question with sad smiles. There is no “getting better” – there is only learning to seek beauty through a stained window of loss.
Robyn’s older brother David and sister in law Angela got into town last night from California. David is playing with my dad and brother in a golf tournament Brighthouse Enterprise is throwing to benefit Because of Ezra Tuesday. We’re honored to see incredible partners like Brighthouse Enterprise furthering a cure for childhood cancer with Ezra’s name attached in some small way. Thank you.
We stayed up late talking about life and how we’re often forced to be strong purely because there is no other option. We talked about how I don’t believe “everything happens for a reason.” I know people mean well when they say it, but it’s simply not true. Ezra didn’t need to die in order for the many good things since then to happen, nor did any of the children of so many friends we’ve made who have felt the horrible sting of childhood cancer. We choose not to be bitter, and we choose to turn this constant awareness of pain into passion to help others. And believe me, that choice has to be made every day. God makes beauty from ashes, yes, but He doesn’t have to burn something to the ground to cause the beauty.
We are strong. We have been made resilient through hardship, and our intimacy with tragedy has tempered us. Today, we will visit both our sons’ graves. They lie under a bell tower in a field we often see deer in. They are right next to each other, and although we’ve not been able to find the strength to be the kind of parents who visit a gravesite often, when we do it is good. We’ve been there alone and together, with books and with a bottle of champagne, with tears and with laughter. Still, I know granite and bones are just a reminder of our sons; they are no longer here. There are pieces of them both left all over our hearts and our lives, and we will never let that change.General | 3 Comments October 13, 2014 this is a re-post from a post I made on Medium
We’ve had the police at our house close to 20 times in the past 90 days. Our story of adoption, sonship, breaking of trust, and healing.
Since losing our two oldest sons, Ezra and Price, in 2010, Robyn and I both have a more visceral understanding of human tragedy. 13 months of cancer treatment, 2 weeks of hospitalized bed rest for Robyn, holding two sons in our arms as they died 8 months apart… you shed any focus on petty things.
We’ve become what I call negative celebrities — we’re the saddest story people around us personally know. This wrenching of our hearts from ourselves tugs on a part of a person, and more often than not when someone first hears our story, they share one of their saddest stories in reply.
I often tell about an oil change I got — a 16 year old kid came to pull my car around, and noticed the tattoos on my arms. He asked, and I told him I’ve lost two sons, and this is where I carry them on me. The kid blurted out “my girlfriend had an abortion last night.” I hugged him and talked a couple minutes, and that was that. It’s become common for us.
We knew from our friend Jesse there are many kids in foster care needing families. We’d become intimate with tragedy. A hard past doesn’t scare us, and we believe we can be a part of a child’s healing as he completes our family. Our friend AJ made a video interview of a kid for the Heart Gallery, and in November of 2012 when Robyn saw it she knew he was our son. He moved in October of 2013, and legally became our son January of 2014. He was 14, and had been in foster care ten years.
Adopting a teenager has been difficult. Or rather, raising a teenager who’s lived what our son has. First, the good bits. He’s smart. His grades are great, and have been great through a decade of foster care. That’s rare. He’s funny, he’s witty, and he’s socially engaging. He loves his little brother, our 4 year old. He’s brought volume to our home, mostly in a good way, and is full of energy. He smiles a lot.
Foster care is a broken system, where kids can live in 12 homes in 10 years, from trailers to traditional homes to group homes to institutions.
Case workers and group home staff aren’t paid well, and the stressful positions have incredibly high turnover. Case managers are loaded up with so many children to look after, they spend little time with each, and become exhausted quickly. More turnover. Kids are brought to “adoption events” where they’re introduced to various families in what our son called kid auctions. All this teaches kids to perform and deflect rather than connect.
In our experience, we’ve found staff members at group homes are often inappropriate with the teens, treating them as buddies instead of kids who need mentoring. During our visitations, staff would try to get our son to have Robyn bend over in front of them. When he got a phone after moving in with us, staff would text him sexual innuendos as jokes.
They need safety to allow them to develop, to grow, to look inward and outward both, taking in the world and learning how it works. Kids need to have truths instilled in them of the value of a person, the perseverance of hope, and the beauty of learning. You can’t just tell a person this, it has to distill from your daily living. When we take away the feeling of safety by dismantling permanency, we’ve ripped away a child’s ability to focus on anything but survival and self.
Keep all this up for a person’s entire formative years, and it’s no wonder our son has a tough time trusting. Or finding much value in people. Or having any belief authority is looking out for him. Still, we wrap our arms around him, hoping if nothing else he can learn from us hope is alive, he has great worth, and will always fit with us.
We were as prepared as we could be for difficult. We connect deeply with what we interact with, Robyn and I, and so have made many friends who are adoptive parents, specifically of teens. Facebook groups, meetings, classes, books, and adoption coaches round out our “village,” along with professionals and incredible friends who’ve been through tough times with us before. My point — we didn’t jump in this thinking we’d save some kid and bask in his gratefulness as the sun rose and set on beauty every day. We’re used to messy, and it’s ok with us.
When our son turned 15, a few months ago, we noticed an increase in intense behavior. He’d sneak out at night all hours, and we couldn’t figure out what he was doing. He’s a teenager, with wild hormones and all, but porn was becoming excessive — devices in the house I didn’t even think could access it (that old flip phone from the storage closet?!) would go missing, and we’d find them days later with search histories to make a sailor blush. We wound up having to sell off our gaming systems.
Of course we were worried about the leaving the house, but aside from spending a ton on a full security system install, couldn’t figure out how to stop it. We’d had multiple conversations, and our son would simply say he couldn’t sleep, and was out walking around the golf course near our house. We explained to him this was not safe, nor allowed. His stories seemed off, and we weren’t sure what was really going on.
At the recommendation of our adoption coach and some professionals on our team, we started calling the police when he would leave. He’d broken out of doors, windows, balconies. He’d unlock various rarely used doors and windows during the day so he’d be able to get back in through them when he left in the evening — it was to a point he was leaving nearly every other day. Making the call to the police the first time was awkward:
- Hello, 911, what’s your emergency?
– My son has left the house and is missing.
– How long ago did he leave?
– An hour.
– Ok… has he done this before?
– And does he come back?
– Yes, he always comes back. But I think he is doing something illegal, and am trying to get some help.
– Ok, but he’s your son?
– And he comes back the same night?
– So what do you want us to do then?
And we didn’t really know, honestly. At this point it’d been weeks of him leaving every other night (that we caught — I’m sure many other nights he just got away with it), and we were exhausted. We’d hear him on our balcony climbing back up (it is easier to get on from the ground, and connects directly to his second story bedroom door). We’d find him on the roof. Or crawling in the dog door. I’d take a flashlight onto the golf course at 2 in the morning when I’d find his bed empty. So the cops… I don’t know. We knew something was going on, and we were looking for help.
It wasn’t unjustified, our thought he was doing something not quite right. At home our son had been more and more disrespectful, cussing us out, sullen behavior, and some minor physical skirmishes with me (two of which did get the police involved). He’d been increasingly inappropriate at home. I’m sure the lack of sleep he was getting wasn’t helping him or us.
So eventually, a neighbor called. Then another. And again. We discovered our son had been on people’s properties, being inappropriate, at all times of the night. And morning. He’d turn on the shower in his second story bathroom, point the shower head up so it sounds like the water would sound with someone in there (not an even fall — great trick actually), turn up his music, and climb out the window. We thought he was just taking long showers (it’d be 20–30 min).
Unless someone pressed charges, the police couldn’t do much. And no one wanted to; I don’t think they wanted the headache, and hoped it was simply a one time thing. They probably thought they were doing us a favor, and if it’d been a one-time thing they would have been. As more occurrences came to light, we realized there were deeper issues to address than the behavior itself. We’d already been in family therapy for a while, and being in foster care calls for regular therapy as well — our son was not new to talking, and is in fact great at it. But it was having no effect on these behaviors.
And the police were getting called for sure. We started learning names. I have a dozen cards on my nightstand. We’d see them out at a restaurant and say hello. Police would come to the house and already be aware of our situation from their co-workers talking about it, wherever police hang out.
In a meeting with our adoption coach, she recommended our son needed a safe outlet to address whatever was causing these actions, and therapy 2–3 times a week wasn’t touching it. We looked for help finding a place like this, and it was extremely difficult. Crisis centers weren’t comfortable they could address our son’s specific needs. Responses would take days to get, in a situation which needed solutions quickly. We weren’t sleeping much.
Someone recommended a process Florida has set in place which allows for in-patient behavioral help in a more intensive setting. Our home was very tense at the time, and we were told the process could be rushed and be done in 2–3 weeks. It wound up taking nearly 2 tough months, with more police and difficult situations happening the entire time.
This past Monday, we brought our son to a place he’ll be able to receive the care he needs. He is still our son. We’ll see him a minimum of 2–4 times per month, and talk to him often. We’ll have family therapy all together a couple times a month as well. The program can last 5–8 months. It was a hard decision, but it is what he needs if he’s going to start the healing from years of being moved around the system. We are hopeful.
I purposefully didn’t share any of this these past few months on our family blog, which has a fair amount of subscribers. Even in this article I chose not to use our son’s name (though if you’re someone who knows us personally obviously it’s different), and I’ve left out many details. Our son has a level of privacy which I question if I’ve pushed too far even with what I’ve written.
But we are not alone in adoption struggles, or struggles with a teen at home in general. And for months we searched, trying to get advice, trying to find somewhere to help. We found very little of people sharing their stories. It felt we were all alone in this experience. We needed to know what to do, and we were torn constantly. I write this to you who is battling this.
And it was difficult. I write to share how little we know about mental health, how little is in place for people trying to care for our kids, how tough it is to get real help when it’s needed. We were literally told from one crisis center “wait until he hurts someone, then we can get police involved and do something.” How horrible. Our son doesn’t need to be detained or jailed — he needs to heal.
Robyn and I need to heal as well. We’ve lost two children, and it hurts. I get it. I am not mad at him. It’s no different than if he was my biological son — there is no giving up. Our son has had it rough, and has become strong where he needed to in order to arrive at today in one piece. In that process he’s had other areas of himself he didn’t get to build on. I hate that he had to go through that — I hate it every day — but he did. So now he needs some healing. We are his stability, his safety. And we are not going to sit idly by and let him blame his past either — he’s got so much future ahead. Good future. He is a walking mass of potential.
Foster care is a broken system. Kids need permanency. Familiar faces. Great role models. When they do get adopted, there needs to be better post-adoption support to help healing begin and continue. We had to claw our way up the ladder to get what was necessary — as a striking contrast, if we’d just called and said “this is too much, we give up,” as many adoptive parents do in these situations, someone will come within a few hours and bring the kid out of the home. That’s horrible — getting help is the right method, and should be an easy one to understand and complete.
We’re looking forward to when our son comes home and we can continue our healing together under the same roof. Home.Charles | 18 Comments September 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