Tampa Convention Center, New Years Eve, entering 2013.

For New Years Eve, Robyn and I went out with some close friends of ours to the Tampa Convention Center, where there would be a “ball drop”, fireworks, and some music. 2012 had been a hard year – walking the line between grief that burns so icily deep it pauses your very will to move forward, and the thaw of knowing our life does in fact continue, fighting to give meaning to our loss of Ezra and Price (and perhaps a level of innocence in ourselves), and rebuilding the picture we’d had of our future family.

New Years is a unique holiday – these celebration or remembrance days tend to trigger our retrospective selves, but none comes close to the heightened scrutiny we feel on December 31st each year. It is a day when the past is tangible. I usually think not only of the past 12 months, but of the years I’ve had before – every end of year slideshow plays in my mind, every stop-and-consider-myself moment. It is one of those evenings when the future and the past are equally present.

The night was spent in good company with good talk; fast forward to the countdown.

Fireworks would be shot off above the bay, so shortly before midnight thousands of us pushed to the terrace. There was a ball drop with cash inside the door, which kept many people inside, hoping for a fluttering $5 bill to land in their stretched fingers. We stood just outside the door.

Just after the cash “ball” dropped, hundreds of people bottle necked out the door to watch the fireworks (they went on for 5 or 6 minutes after midnight). People were pushing and shoving – negating all their resolutions to be more aware of the human race around them – and generally having a good time. A girl in her young 20s somehow got pushed into our small circle of 4, and we brought her into our group to shield her from the throng around us.

It was loud, it was sweaty, and it was pushy. This girl had been nearly falling, and we brought her in and held her up. She smiled and yelled a “Happy New Year!” to us. People were celebrating all around, and the fiery sky was making our faces glow red and green as explosions went off 500 feet overhead. The girl grabbed Robyn’s face and kissed her on the cheek, turned to me, and did the same. In our ears she said “you guys are great. You’re going to be great.”

It was an odd moment, practically, although in us there was no strange feeling. Conversationally (at high volume), Robyn asked the girl her name. She leaned in to us and said,

“Ezra.”

Ezra.

Robyn quickly slipped a bracelet on her wrist, and the girl looked down and said “wait – is this a joke?” None of us really could talk for a minute – so our friend (who’d been watching this all) leaned in and gave a quick recap of our story.

“They had a son named Ezra, who died of cancer in 2010. He was 2.”

She looked at us again, and said “I’ll find you.” Then she disappeared into the crowd, and we haven’t heard from her since.

Thank you for the kiss to start 2013, Ezra. We love you, we miss you.

I mentioned to Robyn the other day how much I love the Pacific Northwest, and how I thought one day I’d like to live here again. We were driving south towards Seattle on I-5, and it was one of those drives where we’re both kind of just lost in our thoughts. Happens a lot for us. We drove along listening to the music for awhile, then Robyn said “but our sons are buried in Tampa.”

We’ve been thinking about neuroblastoma a lot lately – well, in between caring for Charley, who’s been in the ER twice this week for a virus which has left him with zero energy and a mouth and throat full of open sores. I’ve been thinking of how connected we all are in this crap. Monday we’re meeting some people we appreciate – Jeff and Carin Towne. Their 3 year old son Ben died of neuroblastoma in 2008, and they’ve set up the Ben Towne Foundation to honor his memory and fund research into new therapies. They just gave $5 million to a study they’re passionate about, in January.

Afterwards, we’re having lunch with our new friends the Shraugers. Their son Caden is using his super powers to fight stage 4 neuroblastoma at Seattle Children’s Hospital. We met them while launching our #nomorenb project, which is trying to tell these kids’ stories. They are strong, they are hopeful, and they are tired. They’re always smiling when we see them.

Friday Taylor Swift (what? ha, serious) debuted a song – called Ronan – which she wrote about our friends Maya and Woody’s son, who died of neuroblastoma soon after Ezra did. You may have read Maya’s blog. We’ve kind of fallen in love with the Thompsons. They even DROVE out to our first west coast Because of Ezra event recently in LA (all the way from Arizona).

Like a soldier who follows a scout back to an entire field of warriors, we can’t seem to find an end to these stories. Ezra brought us here. And every day we are meeting another name to fight in as well. It’s wearying, inspiring, empowering, and scary as hell.

As Ezra was going through treatment,  I was tired all the time. Robyn and I both had this insane energy that somehow fueled us through every day, but whenever we had moments to ourselves… it was like we were just shells of people. Empty Taco Bell fire sauce packets. It was impossible to feel and impossible to think. Then the morning would come, or we’d leave whatever little room we’d found in the hospital to hide ourselves in (I’m pretty sure I cried, or just stood for a while, in unlocked supply closets a few times), and we’d snap back to ON. You don’t really have any other choice. Imagine feeling the strongest emotion you’ve ever felt, constantly, for 13 months.

When we walked into the ER with Charley (twice) this week, all those memories flooded back. At Seattle Children’s, we literally parked next to the RV Caden and his family are living in (in Parking Lot 4) while Caden is being treated. They left from Montana months ago to come to the NW, and Caden hasn’t been home yet. We walked into the ER, Charley got an IV going, and we spent 8 hours figuring out what was wrong with him. He’s fine – he has a virus which is giving him a lot of pain and sores in his mouth and throat, so I guess not “fine”, but it should go away in the next day or two. It’s nothing long-term serious. As we sat on a hospital bed staring at a screen with Charley’s vitals displayed in blues and yellows and purples, Taylor Swift’s song was released at the Stand Up 2 Cancer event, we downloaded it like millions of other people, and remembered why everything is harder for us now.

Every nb kid I meet reminds me of Ezra. Every sunny day reminds me of the field our sons are buried in.

Some things are important. Like seeing the battles going on in people’s families and lives, and doing something about it. I’m tired of living like islands. I’m tired of extra-curricular activities consisting 99% of selfish things. Things that make you feel good. Studying. A church service. A dinner out. Drinks at your favorite spot. I love all those things, and I mean, I’m way more appreciative now than ever of a mountain top, fresh air, a good book, or those things that take our breath away – but by God, let’s put some passion into addressing the hurt we’re surrounded with, too. For Robyn and I it’s kids’ cancer. Maybe it is for you, too. Maybe it’s something else for you. But please, know the world is much larger than yourself, and work to help someone.

You guys are all part of the reason we’re still here. Thanks.

Our love…

Happy birthday Ezra. What are we supposed to do? How do we celebrate your birthday when you aren’t here?

I can look back in this blog and see Christmas 2009, just a couple months after we learned you had cancer. We had Christmas at home, and you started your fourth round of chemo 3 days later. I see when we sent out your second birthday invite… so full of hope. The day of your big party – so much smiling… so many happy people. We were sure you had no cancer left.  I remember the day before you turned two – the day after we had your party – when we learned you’d relapsed. Hearing – again – there was no known cure for relapsed neuroblastoma. We were sure we’d find a way – you’d be the one to throw your middle fingers to the odds.

I remember the day you died. Holding you in my arms. Your mom holding you. Thinking this couldn’t be real. Watching the heart rate monitor numbers get smaller and smaller. I remember your mom telling me to turn it off. I couldn’t believe the numbers wouldn’t go back up. I couldn’t think past the alarm – why would I turn it off? How will we know when the numbers go back up? You couldn’t be leaving – what would we do tomorrow? We still have to fix you – where are you going?

I remember we stopped and bought coffee at 3 or 4 AM on the way home from that night. I had no idea why we wanted coffee. I had no idea why we should do anything. I couldn’t feel anything. Your mom sitting next to me. Her shirt wet from so many tears. Our bodies so tired from fighting with you so long. You must have felt so tired for so long? Were they asking me questions about my drink? Why does that matter? Why does any of this matter?

I remember your 3rd birthday. Watching that video of you over and over and over again. I remember your mom and I trying to figure out what we should do for your day. How to… celebrate? Remember? What do we even call it? And then today – a year later. Those same wonderings. We won’t stop fighting your war on neuroblastoma – we’ve met so many families who are feeling this same thing. It’s not right. I’m so sorry you had to feel all that. I’m so sorry none of us could find a way to fix you in time. We miss you so much. We love you so much.

I woke up this morning to Robyn yelling my name. Charley’s MIC-KEY button had fallen out in the night – inside it had sprung a leak and the small water balloon that holds it inside him had emptied. The button simply slid out while Charley was sleeping. Which means the hole we place it through had been closing for hours while he slept. The MIC-KEY button wouldn’t fit back in. The same thing happened to the last one – so we have no extra. The last time this happened, Charley had to go into surgery to have the hole expanded.

We spent all day today trying to get the MIC-KEY button back in and couldn’t. Luckily we had a smaller tube we could put in so Charley could get his food and medicine. It won’t last though, so we may have to go in for surgery over the weekend to have the correct size and button placed.

We worked on that til 3PM, when Charley finally went down for a nap. He’s tired.

Ezra would have been 4 today. We were supposed to have a 4 year old and twin 2 year olds right now. We were supposed to be watching them from the kitchen window while Ezra played with his little brothers in the yard. We were supposed to be asking Ezra what he learned in pre-school.

We weren’t supposed to measure everything in ml. We weren’t supposed to have more medical supplies than children’s books. We weren’t supposed to know 20 families by name who’d lost kids to cancer.

Life isn’t the same. It doesn’t “just get better.” You know when you have a headache, and you find yourself more agitated than normal because there’s this pain that’s constantly gnawing on you? You snap easier, you have trouble focusing? We lost 2 of our 3 kids – that pain doesn’t stop. It changes, sure. We see beauty in places still. We smile still. We laugh. Through it all is this dull pain, this knowledge something is off kilter, something is missing, something has happened. Sometimes it gets sharp, and it breaks us for an hour, a day, a week. Our life is still full of medical issues – a simple mishap for Charley (the MIC-KEY button coming out) means we’ll spend all day tomorrow in the ER, and Charley will be getting surgery yet again, at 2 years old.

We are fighting to let people know about neuroblastoma and to cure it. People say “don’t tell the sad, tell the hope. No one wants to hear the sad.” But there’s no need for hope if it doesn’t spring from sadness. Hope is toward better. It comes from a place of worse. We’ll only get louder – this war can be won, by all of us. We need attention on it. We need people raising up fists in the face of neuroblastoma. Not afraid to be loud, to be persistent. Did you know we’re personally hearing about new kids with neuroblastoma almost EVERY DAY? We’re meeting families constantly? They’re all being told the same thing – 30-40% chance of survival. Once a relapse happens, there is no known cure. WHY WOULDN’T YOU SHOUT THAT FROM THE ROOFTOPS TO GET MORE ATTENTION ON IT? WHY IS IT “NICE WHAT WE’RE DOING?” This is a war, and if you have the ability to push the fight forward, we want you to do it. Tell the stories. Give toward the cure. Become a doctor. Share a link. Write to congress. Help us fix it – because of Ezra. Because of Ronan… Layla… how many names do I need to write? I can tell you dozens from memory.

Happy birthday, Ezra. We love you so much.

March is full of mixed emotions for me. March is the month my wonderful mother was born; it is also the month my dad died. March is the month Charley and Price were born, and the month I first found out what it is like to hold your baby while he dies. March is hard.

My dad died when I was 9. Other than a cat we’d had, it was my first personal experience with death. I remember so much about my dad’s character – he was strong, and he was funny. He was not the kind of person you wanted to mess with. He had 5 sons and 1 daughter – me. I could melt his heart like butter. He gave me really high standards of what a man should be, and how a man should treat me. Kyle more than lives up to these standards.

I learned a lot at 9. My mom taught me there is no wrong or right way to grieve. Grieving is so personal, and different for everyone. If we don’t judge each other, we can be more honest. I knew Kyle would grieve differently than me, and I than him. We try very hard to let each other grieve the way we need to, and be honest about how things are feeling. My mom also taught me happiness can be a choice. She’s chosen to be happy, and to always push for more. When she sees things that aren’t right in the world, she does her part to change them. I remember telling Kyle early in our marriage my mom is the strongest person I know.

Charley doesn’t FEEL 2 yet. He’s doing great for himself, and although he has plenty of issues he’s working through, there is constant slow progress. His personality is stubborn and strong. It’s hard not to be reminded of Ezra at 2 (he died just 2 months and 8 days into 2 years old) with Charley’s birthday coming up, and note the marked differences. Even Charley’s birth itself was so much different from what we’d been used to. When Charley and Price were born, I’d been on bed rest for weeks, and was suddenly rushed into an emergency C section, with the twins instantly pulled away from us – we didn’t hold Charley for 3 weeks (Kyle didn’t until he was 6 weeks old), and the only time we ever held Price was when he died. Charley was taken straight from me to the NICU, and there he stayed for 191 days. It was a very hard time, during which we were in treatment with Ezra, and eventually lost him.

Developmentally, Charley is closer to 11-13 months than 24. He doesn’t walk yet (although he’s great in his walker), he doesn’t talk aside from a few sounds like “baby” and “dada” – of course I swear I’ve heard him say “mama” too. He’s just recently made huge strides in eye contact. We’ll be getting leg braces for him soon to help his legs and muscles sit correctly, and he’ll be getting eye surgery in April to fix his left eye, which doesn’t ever look where the right one is looking. 🙂

Within all that, it would be easy to continue to grieve and be overwhelmed by everything. Some days we are. A lot, in fact. My mom’s strength and attitude towards life are a constant reminder to me to see the smiles on Charley’s face, the warm Florida sunshine, and the love of my husband and friends. My mom’s birthday is March 14th. Every year on that day my mom turns 40. March 15th is Charley’s 2nd birthday. We’ll get together with loved ones, and enjoy the day. Our little family is strong, and we are re-learning happiness.

Charley. I wonder sometimes how he’ll feel knowing he lost two brothers without ever really getting to know them.

Charley is 20 months now – he’ll be two in March. He’s come a long way, and takes his time getting where he’d like to be. For the first 192 days of his life he was hooked up to monitors and machines in the NICU, living in a room with a number on the wall and doctors doing rounds every day. He had a bunch of surgeries, including multiple brain surgeries. He had a second mom named Casey – his primary nurse the entire time. We still keep in touch with her. He spent almost a year on oxygen, even at home (man are we glad that loud, loud, loud machine is gone – and so is Charley). He still eats through a tube – which we’ve actually gotten used to, and sometimes I think, “great, one of these days we’re gonna have to say ‘eat your beans, Charley, come on’ – ha.”. 🙂

I guess a good way to explain what “good” means when I say how Charley is doing is to go through a typical day with the little man. Charley wakes up around 9 in the morning (which is great for us) after getting a feed pumped into his G-tube (pics of that nifty thing later in the post) 12 hours overnight. Babies normally need to be burped, but Charley is “vented.” Burping a kid is simply patting them on the back in hopes the air trapped in their stomach will come up. For Charley it’s a bit different. First we disconnect his pump and pump line from his G-tube. Because Charley has a G-tube, we actually take a syringe of 10ml of water or so (oh, our life is very ml based, ha – 3 mls of this, 150mls of that, etc) and push it into his G-tube. Then, we pull back on it and both air and formula come back. We keep repeating this until all the air is out (usually anywhere from 5ml to 50ml of air), and that’s how you vent a baby. 🙂

After he’s vented, we get Charley up and change his diaper just like any kid waking up. Dress him for the day, and bring him to the living room. Even after being vented, Charley still has a pretty active gag reflex, and so we keep him upright and not bouncing or moving a ton for the first 20 minutes or so. Then he gets to play! Charley still doesn’t quite crawl – he can scoot backwards pretty well and side to side, and just the last couple weeks can move forwards as well, although he uses his arms more. Charley is still working on some of his muscle tone since he was born so early and spent a lot of time laying in the NICU. As a result of this it can be difficult for him to stand straight (he sticks out his butt to prove he’s bootylicious), and a lot of other minor things (when he claps, he only moves one arm – the other stays there waiting for it’s mid-five).

At 11 Charley gets Prevacid via the G-tube to help with reflux, and twice a week he’ll also have his speech therapist come in, who has nothing to do with speech, ha. She works with Charley helping him get used to tasting (we’re talking very tiny bites of baby food), used to smelling food, touching it, and she exercises his mouth. Once it’s been this long without eating, you have to teach someone to eat from scratch. After speech, the physical therapist comes. She works with Charley to make sure he’s working the muscles he has issues using, stretches him in ways he should be able to but doesn’t do – gets him used to correct movement.

We take a lot from the speech and physical therapist’s instruction, and try to make sure what they do is also getting done daily for Charley – practice, practice, practice. At 1 Charley naps, again with a feed running through his pump (it sits on a medical pole and pushes the formula through the tube right into Charley’s stomach). He gets a feed again at 6 while he’s awake, and another at 9 when he goes to bed (that feed goes for 12 hours at a slower pace). Our kitchen counter space is covered in tubes, syringes, and formula bottles.

Charley will wake up by 3, and hang out playing and scooting around the floor for a bit. Sometimes we’ll go on a walk with him and Jack (our boxer) around this time.

At 7pm the nurse arrives (Charley’s doing so much better we’re down from 24 hour nursing to only 8 hours a day – they stay from 7pm to 3am), and helps with therapy, bathing, and setting up the night feed. She also will vent Charley, change his diaper, and refill his feed throughout the night. Every night I wake up at 3am and let the nurse out (they are required to “give report” which is lame – it’s usually just “he’s slept fine, please sign” – something which could totally be done the next day, with a knock on our door if there IS an issue).  Aside from a couple times when we travel, I haven’t slept through the night in a year.

Charley loves bath time! Every day at 8 or 8:30 is bath time, and he has a blast. 🙂 By 9 he’s hooked up for his evening feed, and hits the rack for a solid 12 hours. YES.

The cheeks on Charley are the kind an aunt would grip and never let go of, ha. Babies usually lose these cute cheeks somewhere in their second year, as they begin eating more and their jaw is used. Since Charley doesn’t eat, his jaw doesn’t do much right now – leaving all that cute baby fat in his cheeks. We’re also working with an opthamologist who sees Charley about his eye. Both eyes have great vision, but also due to the premature birth, his right eye is very lazy (he wears an eye patch 3-4 hours a day in hopes to adjust this). Even with the patch, the doctor seems to think sometime in 2012 he’ll need surgery to correct this, where they actually surgically strengthen the eye on one side, and weaken it on the other (muscle, I mean, not vision). This straightens out his eye.

All of this has made Charley a very independent guy. He’s becoming a little more used to cuddling or hugging, which is nice, but never really was into that. He liked being held, but didn’t melt onto you like you expect a baby to. Eye contact is tougher for him. So far his life has been a collection of issues he’s been overcoming quickly, slowly, constantly. I’ve said before – most babies spend their first year laughing, learning to crawl, eat, etc. Charley spent his first year learning to breathe. He’s a tough cookie, and we’re looking forward to see the boy and man he becomes. You can see him getting stronger all the time – and he’s already covered in scars which I’m sure chicks will dig from all his surgeries in the NICU and first year. Doctors seem to think by the time he’s 3 or so, he should be developmentally caught up with “normal” – as if anyone in our family has been that. 😉

At times it can be difficult with Charley to see the baby boy behind the collection of medical issues. Lately, though, he’s been laughing more, smiling more, and becoming more mobile – he’s strong, and the more he overcomes his medical stuff, the more we see his personality and the kid himself. Abby is over a lot as our official “please watch our kid so we can get dinner out!” lady, and seems as much a part of our family as he is. She watched Ezra often during treatment, and helps out a ton now as well. We think she’s great.

Well – there’s some insight into Life With Charley. Thanksgiving is coming soon…