Tuesday, 23 May 2017

Been busy

 
They say baby girls are tougher to handle than their male counterparts.

While that is certainly true in our experience, that's not the only reason this blog has been silent the past two months.

With Samantha one month old, I left for Orlando and the Extra Life United gaming tournament in late March. Work-wise it was a bad time to go, with hockey playoffs going on among a busy local sports scene in Medicine Hat this spring. For her it was tough too, as she wasn't sleeping well, crying a lot, as babies that age tend to do.

But I had looked forward to Orlando for months, had practised my tail off at the six games I was to play, hoping to win some money for the Alberta Children's Hospital.

It didn't happen. And the blog I wrote on the way home was so negative, I didn't actually post it. I'm going to post it now, just before this one, because it's still accurate. But I do blame myself for not dealing with the stress of the weekend better. You'd think someone who's been through what I have would handle things better, but alas I did not. You live, you learn, right?

A lot of things have calmed down since that crazy March. Samantha included. And we've been busy, getting some plans in the works for our Extra Life fundraising for this year.

In April we attended Calgary Expo and I ran a panel about Extra Life, with 75 people turning up to hear all about it. Ex-Calgary Stampeder Jon Cornish established significant nerd cred talking about World of Warcraft and anime, and hopefully we inspired some people to sign up this year.

We've got a new venue lined up for our gaming marathon this year! On Nov. 4, 2017, the #Dominicstrong team will host a 25-hour event at the Beveridge building - which has a pub-style lower floor called The Cellar perfect for video and board gaming. You can click here or find the event on our Facebook page to indicate whether you'll be attending.

The theme of our Extra Life fundraising this year is going to be bigger and better. The upgraded game day will be part of that. There will again be an online auction, and an event at Hooplas Family Entertainment Centre (mini golf being the centrepiece). We've surpassed US$90,000 raised in four years doing Extra Life for our hospital, and hope to break the six-figure mark. I suppose in Canadian dollars we already have!

A couple weeks ago we got some special items in the mail. A plaque to recognize the nearly US$25,000 the team raised last year, and individual plaques for Trish and I (we each raised about US$7,000 each). Hopefully we can keep the momentum going for many years to come in Dom's name.

Thanks as always for your support. 

Monday, 27 March 2017

Long weekend

 
Love.

Sadness.

Anger.

Jealously.

Compassion.

Fear.

Hope.

Extra Life United ran the gamut for me these past few days, and I'm not sure what the takeaway is.

I wasn't going to go back. I didn't like the idea of Trish not being there with me, so when we realized Samantha's birth would likely preclude her from the trip, Trish was the one who said "you have to go."

We'd made too many friends for one of us not to go.

Getting there was great. Emergency row seats, extra leg room, the world's friendliest customs area in Winnipeg and a perfect recollection of where to go at the Orlando airport had me at Coronado Springs — the resort where Children's Miracle Network's Momentum conference and our United event takes place — in record time and in a great frame of mind. Making things even better, the sun was just setting as the plane touched down. I thank Dominic for that.

I saved some money by sharing a room with Rick, another participant who also had to leave his wife and kids behind. Everything was looking up.

Right away I ran in to friends from last year. Nick from St. Louis. Nolan from Saskatoon. Reed from... the Internet? He kind of lives there. But he's also got a new baby, a few months older than Samantha, back home.

I had no interest in going to the amusement parks. We'd done that last year. So it was all about the gaming competition and the camaraderie accompanying our Extra Life community. I'd been preparing for the games for months, learning them all and practising, often on the official Extra Life Twitch channel. I wanted to win a bit of money — there was US$150,000 up for grabs in all — to bring home to the Alberta Children's Hospital.

Right from the start it was a mixed bag. I had a wonderful on-stage interview with Extra Life creator Jeromy Adams. Most of the audience knew my story and the surprise that we'd had a baby girl, but few knew about the ceramic heart Trish carries with her — the other one given to Dom when he died. A photo of Samantha with the heart on her brought the two stories together.
 
Then was our chance to interact with some of the champion kids who were there for the Momentum conference. But unlike last year when we were guaranteed to see them all at a pin ceremony, United started a day later this year and so the kids had done their pin ceremony a day earlier, and had been out at the parks all day prior to being invited to play games with us for a few hours.

I'd had special dice made up — a huge shout-out to Chessex who did them for free after hearing our story — with the thumbs-up logo and #Dominicstrong. I wanted to give one to each champion child. Because they were casually filitering in and out, I never got a chance to play any games with the kids because I was so frantically running around trying to find kids I hadn't yet seen and giving them dice. We tried to get a photo of all the Canadian champions and Canadian Extra Lifers, which looks great until you realize how many are missing from the photo itself.
 
As you can see, I was already spinning into negativity, which is not the point of this week. It's about energizing us for the fundraising year to come and being inspired.

Friday was similar to an Extra Life 24-hour marathon, which is to say exhausting. The first three hours was the champions medal ceremony, in which we cheered each champion child. The Canadian champions went first because many of them traveled home afterwards, before the ceremony was even over. My hospital reps won a major award, but it happened the previous night, while I was on a different stage in a different room. I wish I'd been able to cheer them, too.

Then the gaming tournaments began.

Up until dinner time things went great. I won my first game, lost the second to a guy who wound up winning the entire Star Realms tournament (worth $4,000 to his hospital), then advanced with a table win in Splendor, second place at a table of Citadels, second by a narrow three points in a game of Dominion (only first place advanced). After another on-stage interview and a playing of Dominic's miracle story video, I went back and won a table of Ticket to Ride. That meant semifinals yet to come in Splendor, Ticket to Ride and Citadels — guaranteed money if I finished top two in any of them. On my way for a quick bite to eat — I was feeling a bit faint by then — Jeromy had this look of amazement as he said "it's almost like Dominic is helping you." And, while that was a great story, what went through my head was "No. I've worked my butt off to be good at these games. That's why I'm doing well." I was already very tired.

Another fellow from my Ticket to Ride game, Lucas, came with me for dinner. We'd both been given time before starting our next game so we could go. But when we got back to the game area, we had a rude surprise. My table was ready for me, but his had started without him — he'd been disqualified. We had both checked before we left to prevent that from happening.

I was livid. But I could tell the tournament organizer had no clue how to solve the problem. So I did it for him. I proposed that we include Lucas in our four-player table of Small World, as the game has a five-player option. Everyone concurred. Instant karma. And it was the game I felt best about.

He won. I came second. Only the winner advanced. In fact, he even won the whole tournament of it, and US$4,000 for his hospital.
 
I then finished third in Splendor, one point short of second place and moving on to the finals and guaranteed money. I then finished third, never with much of a chance, in Ticket to Ride, unable to draw the cards I needed to win. And Citadels? Well, apparently the stated rules of top two advance were changed without anyone telling me. Only the table winners advanced. So I won nothing.

There were also challenge stations with a total of US$10,000 to be won. Games like Rocket League, FIFA, NBA2K17 and Just Dance. I tried Rocket League six times and lost each one of them. Did Just Dance and lost. A woman came up to me and said she'd intentionally lose at Just Dance so I could win something. She still beat me. It was humiliating.

Don't get me wrong: I still had a great time. We went out to Disney Springs (a shopping and nightlife district, essentially) and hung out, got some cute clothes for Samantha. It was great to see the Enmon family again, their daughter Tori having inspired Jeromy to start Extra Life. A few people gifted things for us, like this amazing canvas print done on an iPhone, and clothes for Sam. And I have dozens of hugs to send back home.

There's no overarching theme this year though. Last year it was hope. This year, it's merely a mixed bag of emotion. I blame my own competitive spirit.

Wednesday, 22 March 2017

United

 
The first trip to Orlando ended in heartbreak.

The second ended with hope.

Today, I head back to reconnect with what'a become a second family to us.

You've seen what we've done through Extra Life in the past. The 24 (or more often, 25) hour gaming marathon takes place annually, with all the money we raise going back to the Alberta Children's Hospital where Dominic spent so much time.

For some Extra Lifers, one day a year is not enough. Many fundraise all year long, and for some that's not enough. For those who want to take their love of the charity to the next level, or those who simply want a once-in-a-lifetime experience, Extra Life United was created.

When it first took place in late 2014, I got an invite because I was among the top fundraisers. But I wasn't about to leave Dom and Trish at the hospital, certainly not when we were on the last gasps of treatment before he was declared terminal.

Those who went said it was a life-changing experience. With a huge prize pot and a group of incredible gamers, the real stars of the show were the champion kids. You see, Extra Life United takes place during Children's Miracle Network's annual Momentum conference. One child from each state and 13 from Canada are flown in, treated as the rock stars they are, representing their home hospitals and inspiring everyone with their courage, joie de vivre and amazing skills as spokespeople.

I thought, one day we'll get to Orlando. Maybe Dom will be picked as a champion child.

We got back to Orlando for his wish trip instead. He decided he'd never leave, crashing the morning after we went to Disney World and dying a couple days later.

We thought we'd never go back to Orlando.

Six months later, we returned for Extra Life United 2016. Children's Miracle Network produced a video about Dominic and our story, which hopes to inspire others to give back to their communities too.

At last year's United, we met so many incredible people. We met champion kids like Derek from Edmonton, and Peyton from Calgary, and their families. We met the Enmon family, whose daughter Tori inspired Jeromy Adams to create Extra Life. And we met more than 100 of the most amazing gamers.

From minute one we all had a connection. It was an instant family. So of course I had to come back.

This year will be much different. It's a reunion, plus there will be brand new champion kids to meet and new gamers who are at ELU for the first time. I'll be thinking of Derek especially - he died this past year. He was so elated to meet some of the celebrity gamers who had flown in last year, not realizing he was the star in their midst, not the other way around.

Trish and Samantha couldn't come because it's too soon after the surgery and the risk of blood clots makes flying a risk for Trish. But they will be FaceTimed in whenever I get a chance, and I know I'll be receiving many hugs on their behalf.

I'll also be hoping to improve on how I did at the competitive gaming last year. Trish and I each made a tournament final, winning a combined US$1,000 or so for the Alberta Children's Hospital. This year they've added challenge stations where you can win a quick $50 at a time, and I'm signed up to play board games Citadels, Ticket to Ride, Splendor, Small World, Dominion and Star Realms. You can watch the action live at www.twitch.tv/extralife4kids all day Friday and Saturday.

And I'd be remiss not to mention I've got my fundraising page already set up at extra-life.org/participant/sean - or donate at extra-life.org/participant/trish too.

It's going to be a jam-packed few days. I can't wait.

Monday, 20 March 2017

Normal is good


She's got his cheeks, his nose, some of his clothes and all of his ability to be cute.

She's also got an oximeter on her foot at night, ready to alert us if anything goes wrong.

The new normal with Samantha is surprisingly similar to how Dominic was, almost to the point of deja vu. But we still look out the back door and there's his bench, on a spring day overloaded with kids at the playground. His urn still sits atop the mantle. His beads are still displayed prominently.

I'd have thought there would be more sadness, or at least fear, tinged in with all of the love for our new child. Maybe that will come, especially at the 11-month mark when he was diagnosed with leukemia or when she has her first illness. I'm not searching for those feelings though. Maybe I'm too tired for any foreboding. Babies don't tend to sleep very well the first few weeks.

Sometimes this feels like Dom reached down from the heavens and said "you get a do-over." I looked into her eyes last night and felt him there, still unable to speak but smiling, glad I was happy in that moment. All he ever wanted was for people to be happy.

Realistically that's not how it works. There will be hurdles ahead, and we'll get through them just like we got through his problems. But I think our experience has allowed us to take greater comfort in the good times, and worry less about the minor troubles. That sense of perspective never goes away, even as it might lessen over time.

On Friday we took her to a local community centre for a baby social time. We'd taken Dom there often, and sure enough the staff remembered us. We'd donated some things to them and I immediately spotted one - a play mat and pillow for tummy time. One mom talked about going to swim lessons and Trish and I just about squeaked we were so giddy with the idea. Not until she's had her first set of vaccinations though.

Then another woman came up and started asking questions.

"Do you have any other children?" Yes, yes we do.

"How old are they?" Well, he died of cancer 18 months ago. He's forever two.

I know Trish feels bad about answering that question, because some people then feel bad for asking it and want to crawl in a hole. But I almost want them to ask it, because even though it's a bit awkward I'd rather they know why I'm holding Samantha extra tight, or glancing at her more than is normal. I'm not going to buy a bumper sticker that says "rainbow baby on board" but find it easier to get the awkwardness out of the way.

Just as important, I try to normalize the conversation after that by not continuing to talk about Dominic. If someone wants to ask about him, fine, but lingering on the subject can make finding middle ground impossible with someone you've just met.

We all have our own stories. This is ours. Dominic is forever part of it, and this new chapter is proving to be just as exciting.

Thursday, 23 February 2017

Samantha

 
Samantha Trish Rooney, we love you.

Born Thursday, Feb. 23, 2017 via Caesarean section at the Medicine Hat Regional Hospital, our little girl is doing well. Meanwhile, we've had to look at each other a few times to say "she's real."

After Dominic we never thought we'd have another child. Certainly not so soon. Just like Dom, once Trish found out she was pregnant she steadfastly refused to believe it until she was born.

Unlike Dom, Samantha has some hair already and is a bit bigger than he was at first. But her face is familiar, those chubby cheeks and cute nose beg to be kissed and she definitely has a healthy set of lungs.

Though still a C-section, hers was quite a different scenario to enter the world. Two of the nurses in the operating room were friends of ours. It wasn't an emergency situation because we knew well in advance she was facing the wrong way for a natural delivery. No 29 hours of labour leading up to it, and nothing to worry about after.

She enters a world of hope where she could grow up to do anything imaginable. There will be challenges, sure, but we will do everything we can to help her navigate them.

And she's got a brother looking down on her, one whom she'll never meet but will learn so much about.
 

Thursday, 16 February 2017

So much to live up to


I'm sorry, baby girl. You've got impossibly high expectations to live up to, and we're scared as hell about you.

You'll never know your brother. But his legend will forever cloud how people think of you, what they expect from you. He was so happy! He slept through the night within a month! He inspired people! Yet your mom and I won't be able to look at you without a little bit of fear creeping in that what happened to him might one day befall you as well.

It's irrational; we know that. But we lived the nightmare, and there's a spot way back in our minds that says it's a mistake to have another child at all. What if our genes are destined to fail you? What if the dragon that took him comes for you too?

You've already managed to be grounded before you're born. By flipping around in mom's belly, you had the doctors thinking C-section one week, natural birth the next, then back to the C-section again. Had it just been a C-section from the get-go, you might have come early enough that mom could've come with me to Orlando in March for the Extra Life United gaming tournament and conference. Mom likes the idea of a vacation, but the doctors don't like the chance of blood clots so they won't let her go so soon after you're born.

It's not fair. You shouldn't be saddled with any of this. But on the other hand we are going to love you just as much as we loved Dominic; we know how precious you are, how we will cherish every moment, no matter how tired we get or what problems may come.

A lot of people are excited to meet you. There was a baby shower the other week and your closet is now full of clothes. Mom cut down her hours at work, and is now on maternity leave. I swear I'm going to install the car seat tomorrow (or maybe the next day).

Mom was talking to a friend yesterday and lamented how you're already causing her issues. They joked how funny it was for a parent to be scolding their unborn child. It also reminds me how stressed out we really are about you, even if we don't say it. Everyone expects us to be so excited about you - and we are - but that's just one side of the coin. It's just not that simple after what we went through. It never will be.

I watch videos of him and it feels like eons ago: It wasn't even two years. It's like looking through a foggy mirror at someone else's life. I had hair! We raised how much money? Is it wrong that I miss so many of the staff at the hospital?

You can never completely move on, and now we're on the precipice of another huge change. I'm looking forward to it - I guess I'm hoping you're going to reach out and drag me forward. It's an unreasonable expectation, but I'm counting on it nonetheless.

It's 4 a.m. and I can't sleep. It's not your fault. I mean, it will be some other time I'm up at 4 a.m., no doubt about it. But for now I'm a mixture of anxiety and sadness and hope and fear and love.

We can deal with whatever's ahead because we got through what happened in the past. That doesn't mean it'll feel like a cakewalk, however, and you're still totally grounded.

Thursday, 26 January 2017

Nesting

 
It's a month away from baby girl's due date and we've finally flipped the switch: It's time to get ready for her.

Sure, we did the room a month ago, but now that Trish has had to cut back her hours at work due to nausea and just generally being exhausted, it's sunk in that this kid is coming soon.

It started with wanting to clean out a closet. Then came a room. Yesterday I went through my closet and threw out bags full of old clothes.

We did some minor repairs to the room, a few final touches. Went to Costco and bought baby wipes. Suddenly I found myself checking camera angles for the baby monitor.

And then it hit me: We're nesting.

This is all perfectly normal, of course. We did the same thing before Dom. Wanted the house nice and clean, because we knew we wouldn't be getting much sleep the first few weeks.

As it turned out that phase didn't last long. He was an amazing sleeper, until everything went awry.

Baby girl might be coming soon, but we're still not entirely sure how that's going to go. She was flipped the wrong way a month back, then a couple weeks later had flipped head down - perfect. Two weeks after that? Back the wrong direction. She's a gymnast, and already isn't listening.

Today there was another ultrasound, but with a twist: the technician had to do a test. Points for limb movement, breathing motions and the like. She had 30 minutes but achieved the target score in about 10. Total all-star.

Trish is not-so-silently hoping she comes the first week of February. The doc said she would need six weeks before he'd allow her to go on a plane. Why would you want to fly? To Orlando, of course. When we went to Extra Life United last year we made so many new friends, and this year's event runs March 23-25. I've already got my ticket booked, but chances are Trish and baby girl won't be able to make it. There's always FaceTime, but of course Trish is holding out hope.

I might as well mention I have set up my Extra Life fundraising page for the Alberta Children's Hospital for 2017. Team #Dominicstrong raised US$23,256.03 last year, and we'll hopefully improve on that this year.

Not sure when the next update here will be. Maybe when there's a baby?

Thursday, 29 December 2016

Room to grow


For more than a year the door remained closed.

His bed, unmade since he slept in it last. A bib in the hamper. A plastic bag labelled chemotherapy on the dresser, with a couple water-filled syringes inside.

We couldn't bring ourselves to do anything with it.

With a baby girl on the way, we knew we'd have to sometime. That sometime was this week, a couple days after Christmas.

Angie has been one of Trish's best friends through all of this. We met her family in hospital when their daughter, around the same age as Dominic, was diagnosed with leukemia. She's doing great now and every once in a while Angie will pay us a visit, driving three hours from Calgary and staying a day.

Those days, we're at our most productive. Art projects get finished. Unused medical supplies get divvied up and sent back to hospital families. And this week, the door to the room is opened.

Angie showed up and within a half hour they were in the room, going through his old clothes to decide what was gender-neutral enough to put in the keep pile, what could be donated and what needed to stay (because you never know...). The first pile turned out to be pretty small, though Angie and I did insist we keep the Darth Vader pajamas. And the light sabre. Duh.

You'd think going through the room would require a couple boxes of Kleenex, but no. It felt good to see the room transform, and thanks to a donation from Rae, a friend in Medicine Hat, it really does feel different now. Her twins had a ladybug-themed room and she gave all of it to us. Combined with the original idea that the top half of the room was blue like the sky and the bottom green like the grass, the resulting motif is nature. Trish wanted me to paint it for a while but - Angie to the rescue again - it got voted down.

It's amazing how much stuff was in there. We've got three bags' worth of clothes and sheets and stuffed animals to give away. That's after we chose plenty to keep. The same sort of thing happened a year ago when Trish and I went through all of the toys. You keep the best stuff knowing you'll inevitably acquire a lot more.

I envision some day out with our baby girl when we recognize an old outfit of Dom's on some other child as we pass. Will it feel odd? Will we smile or cry? Maybe we'll laugh. Maybe all three.

The door is open now. We can see right in to the crib from our bedroom across the hall. The baby monitor is ready, the light is a dim pink, and the bed is made.

She's healthy as can be according to our doctor and the monthly ultrasounds. Sideways, which may require another C-section, but a strong heartbeat and kicking like nobody's business according to mom.


Another couple months. We're ready to meet her.

Sunday, 11 December 2016

To infinity


We only met once or twice. Our time together is measured in minutes, not days, months, or years. But we'll never forget them.

Kids with cancer tend to do that to you.

Zander wasn't even awake when we came to see him and his parents. His brain cancer and the chemotherapy needed to treat it left him wheelchair-bound, and they were staying at a house in Calgary, a four-hour drive from their home in Saskatchewan. He was laying on the couch, zonked out.

You knew everyone was exhausted, because when you're a cancer parent that comes with the territory. Heck, when you're a parent that comes with the territory, but it's amplified when your life is turned upside-down.

We offered what help we could, and continue to be in touch with them to this day. Whenever I saw a picture of Zander with the animal stickers we'd recommended keeping his feeding tube in place, I smiled. He was such a strong kid... maybe I was projecting a bit of Dom onto him too.

Like us they had a long road. The discovery of the tumours despite numerous doctors disagreeing there was anything wrong; the treatment, even the hope after initial remission that somehow persevered after the cancer returned.

Four-year-old Zander, like our two-year-old Dominic, was wise beyond his years.

One night this summer he lingered, looking out at the stars. "I'll be one of those stars someday," he told his mom.

Not bad for a kid who idolized Buzz Lightyear from the movie Toy Story.

We only know that story because it was shared at his eulogy Dec. 10 in Medicine Hat. On the program for the service was Zander and the headline, "To Infinity and Beyond." He's a superhero in our hearts.

Derek, we met when we went to Orlando in February for Extra Life United at the Children's Miracle Network conference. We'd made sure to research all we could about the champion kids coming from Canada, and Derek was the 16-year-old brain cancer survivor from Edmonton's Stollery Children's Hospital.

He even liked video games, so this was destined to go well. As it turned out, he knew many of the celebrities Extra Life had brought in for the tournament. One night we were hanging out with Derek and his family when some of the guys from the gaming group Mindcrack showed up. He thought they were the stars, but the truth was he outshone them all. The smile he had on his face when I took their group photo was priceless.

When it came time for the Extra Life group to share in some game time with the champion kids, the presumption was we'd take it easy and play safe so they'd win. With Derek, that wasn't necessary. He was so good he probably would've won money for his hospital if he'd had the time to participate.

Derek also had wisdom most could only dream of. "If you can make a small difference in someone's life, that's what life is all about," he said. "When you do something nice, people remember it, so you should remember to stay kind."

His dad shared those words on Facebook today. Derek's funeral is Wednesday.

Derek and Zander died within hours of each other Dec. 4.

I'd love to share some greater truth or lesson from all of this, but the fact is all I feel is pain. That'll evolve into something else, but for now, I think of the road ahead for those families. Among the hardest parts of losing a child in this way is that after the eulogies, the donations in kind, the extra hugs and meals from friends is that eventually, it ends and you're left with a broken heart. At this time of year when everyone celebrates being together, knowing someone you love is gone is simply horrifying.

Yes, you can refocus and pour your heart into what you still have. And I am thankful we know Zander and Derek and all the other kids we've met because of Dominic's journey.

But I'd be much happier if I didn't know any of them, or cancer.

Saturday, 3 December 2016

A long silence


I know this blog has been quiet. Sorry about that. After the 25-hour Extra Life marathon in November we needed a break from everything.

First of all let's catch you up. If you don't follow the #Dominicstrong Facebook group or either of us on Twitter, you might not know some of the things that happened on Nov. 5.

Here's what it looked like if you visited the Extra Life channel from 4-5 p.m. Mountain time that day (skip to the 15-minute mark for the gender announcement):

In short, IT'S A GIRL! We've even had a follow-up ultrasound confirming the news. This means there will be clothes to buy, and a bit of separation from the newborn being compared to Dominic. They'll no doubt learn about him someday, the big brother looking down from above, but it's a bit of a relief not re-using all of his stuff.

The rest of the 25 hours was fantastic. We played tons of games, at the 23rd hour I even sweated out some Just Dance on the stream. A Stormtrooper from the 501st Legion even dropped by. We wound up blowing by our US$20,000 goal, the team having raised $23,196.03 as of the writing of this blog. Donations can be made until Dec. 31 but we won't be asking for any more. There are plenty of other charities deserving of your support this time of year.
There was also talk of returning to Orlando in March for the next incarnation of Extra Life United. Our obstetrician has put a damper on that, as it'll be too soon after the baby comes for Trish to be flying on a plane. I might go, and if you're interested registration is now open (http://www.cvent.com/events/extra-life-united-2017/event-summary-c3a5750363df4f85a2a319c5621a68bc.aspx): It will be a great time to connect with the Extra Life and Children's Miracle Network communities.

I'm going to hand off the rest of today's blog to Trish:

After Extra Life we figured our world would slow down a bit, but it hasn't. Sean has been sick and I seem to have caught his sickness. Also with Christmas coming up it's been a hard time. I've always loved Christmas, the lights and decorations and present and parties, such a fun time of the year. Last year, we ignored Christmas completely and took off to Vegas. We had a great time, but even in Vegas you can't completely ignore Christmas. 

This year, we aren't going anywhere due to baby girl being due in a couple of months and Sean having to work Christmas this year, 'cause we can't remember the last time he had to work Christmas, so it was definitely his turn. 

Today is 15 months since Dominic passed and our second Christmas without him. And it's hard. We see pictures of happy families setting up their tree and lights and think, that used to be us. At some point we will make it back there I hope with new baby coming, but it will always be a hard time of the year. 

Sean's talked about putting up Christmas lights, but with him being sick the past week or two it hasn't happened and I'm very indifferent about it. I won't stop him from doing them this year, but I'm also not really encouraging it.

People have also asked if we are ready for baby girl's arrival and I just laugh. No, we are not ready. Technically we have a crib and a car seat, so she can come home and have somewhere to sleep. Dominic's room, which will be baby girl's room, still has all of Dominic's stuff in it. The closet and drawers are filled with his clothes and the crib hasn't been changed. At some point we will have to go in there and clear it out and start to put baby girl's stuff in there, but there just never seems to be time. I've bought Tupperware bins to put all of Dominic's stuff in, but that about as far as we've gotten. I'm off work around Christmas so I keep thinking that's when I'll get around to it. But who really knows.

People say, why don't you use a different room then. And this is where my practical side comes out. I'm not buying a new crib, new dresser, new change table, and new rocking chair. It just doesn't make any sense. And Dominic never outgrew those items so they are all still in his room. If you take that all out of his room and move it to a different room, then his room is not really his room anymore. So there just doesn't seem to be a point in that.

Technically baby girl could come anytime, but she's not due until February 28, so I'm hoping she'll stay in for a while longer. At least until I can finally get around to giving her her own room. I hope that for her life she doesn't feel like she's living in her brother's (who she will never meet) shadow. And so I do hope we can start off by giving her her own room when she arrives. It's just going to be hard. But that's how life is. Life is hard, so we have to put on our big girl and boy pants and deal. We don't have any other choice.

Friday, 4 November 2016

Day -1


When you have a bone marrow transplant there's a countdown to the day it actually happens.

In those days you are given more and more chemotherapy, breaking down your immune system for Day 0, which is when the new cells are transplanted from the donor into you. You get weaker, and weaker, and then the cells are supposed to grow and replace your old immune system.

Today is Day -1 for our charity work. I'm here in the middle of the Kiwanis Room, downstairs at Medicine Hat Lodge, having set up some things and done a test video stream before we go live at twitch.tv/gomerstraw at 8 a.,m. (Mountain time) Saturday and begin our 25 hours of gaming for the Alberta Children's Hospital.

The last few days have been increasingly stressful, but they pale in comparison to what kids in the hospital face. The marathon itself will be tiring, but then we get to go home to our beds. We aren't stuck in isolation, uncertain of what's coming next.

A couple weeks ago a team from Shaw TV Medicine Hat came to do a story on #Dominicstrong. It was posted last night. The idea is it can run in future years, with them tagging whatever event we're doing next at the end. They did a great job.


After putting out the word that we are still short of our US$20,000 fundraising goal, there's been an influx of huge donations. As of this blog post we're at $US18,000 as a 20-person team. It would be amazing to break through the goal during game day. Visit http://www.extra-life.org/participant/sean or http://www.extra-life.org/participant/trish to donate through Trish or I - make sure you're clicking a blue donate button as the green button you might see elsewhere on the site only donates to Children's Miracle Network as a whole.

If you donate before midnight tonight (Nov. 4), be sure to include a note saying boy or girl to be entered in our gender reveal prize draw. We reveal the baby's gender Saturday at 4 p.m., then will do the draw out of whoever had guessed correctly. The winner gets a pair of #Dominicstrong word art mugs.

It's amazing in here. The projector screen can work with a gaming console or play videos or games off my computer. Shaw came and set up a custom Internet router for us to use. EasyHome will be here later with a dozen TV's. Bob and Jordan and James were all here to help set up and drop off all of their board and video games to use, and other gamers will be here tonight getting their systems set up for all to play.

Day 0 is supposed to be scary. It's the day when things can go wrong. But when Dominic's Day 0 came we danced, smiled and gave high-fives. It was all about hope for a better tomorrow.

Game day will be all about dancing and high-fives and thumbs-ups too. Because by raising these funds for the hospital, we're helping give sick kids and their families support too.

Monday, 24 October 2016

Prepping


The dim blue light has been turned off. The door is closed, though the scrapbook-style sign still proclaims this is Dominic's room.

Last week I noticed the medical tape holding it up for the past year was starting to give way. I pushed it back up but couldn't help but think: it's going to come down soon anyhow.

His urn has moved onto the mantle above our fireplace, beside the picture of Michael, Trish's nephew who died of SIDS 20 years ago, and our dog Megan who passed two months ago.

There's still a brown Ziploc bag in his room for holding chemo drugs, and his crib sheets remain unchanged. We either haven't had time or energy to deal with it. With all of the fundraising happening, we likely won't for another few weeks.

People ask Trish "have you finished the new baby's room?" She laughs. No, no, not even close.

This is all to say we are moving forward and also not going anywhere. It's possible to do both. The charity work is how we parent our son now in his absence but we will soon have to balance that with parenting another child.

We will have another ultrasound at the end of the month and hopefully baby will cooperate and let us know if it's a boy or a girl. That will dictate a lot; we have so much stuff for a baby boy. I think there's a lot of wishful thinking that we'll have a girl because that's the only way we'll need any clothes for the kid's first two years. Forget about toys - we may have given a lot away last year but we also kept plenty.

It's now time for the final two week push for donations to the Alberta Children's Hospital through our Extra Life campaign. If you choose to donate online you'll get a few things we couldn't offer through the online auction: A tax receipt, and chances to randomly win some prizes! Every donation from now until Oct. 31 goes into a random draw for a pair of tickets to see the Calgary Flames play the Columbus Blue Jackets Friday, Dec. 16. These tickets are in the fancy lower bowl - you're 20 rows from the ice. Also don't forget about the gender reveal contest - include a note in your donation saying "boy" or "girl" and if you're right you could win a limited edition silver #Dominicstrong word art mug plus a second mug (pink if it's a girl, blue travel mug if it's a boy).

Our team has raised US$14,000 as of this blog post. That's 70 per cent of our original US$20,000 goal. Game day Nov. 5 at the Medicine Hat Lodge starts at 8 a.m. and goes 25 hours - come by and play some games with us and make a donation! Cash donations on site don't get that tax receipt but we do have a Nintendo 3DS to give away! The official baby gender reveal will happen at 4 p.m. so if you want to come for a quick visit that will be an exciting time. No head shaving this year (unless someone wants to volunteer?!), but still lots of video and board games to play.

Wednesday, 5 October 2016

Ten thousand reasons to smile


After raising some $65,000 last year for the Alberta Children's Hospital through gaming charity Extra Life, it was hard to decide what goals we'd set for the #Dominicstrong team this year.

Obviously, they wouldn't be that high. We asked for donations in lieu of gifts or flowers in his obituary, and money like that isn't likely to be duplicated.

We had a meeting to figure out what major events would take place. The mini-golf fundraiser was a go for Sept. 11. We set the online auction to wrap up Oct. 2. Finally, the 25-hour game day starting Nov. 5 would cap it off.

Right away, I said I wanted us to raise US$20,000 (all Extra Life donations are made in US dollars due to the leaderboards including all of North America). That's about $27,000 Canadian, so less than half of what we raised in 2015.

I don't think Trish believed we could get there. With a month to go until game day, I'm still not sure. But we are half-way there.

This blog may have been quiet the past few weeks, but only because we've been so busy. The mini-golf fundraiser had a major setback when rain forced its postponement. Still, on Sept. 18, $1,000 was raised. The highlight for me was getting a $100 donation for having my face painted with Dom's Super D sign.

We had barely started asking for donations for the online auction at the start of the month. We will need more help next year, but for this year, it was basically Trish and I. We spent entire weekends messaging people, and pretty soon had just as many items as the auction had last year.

I was stunned by the response. Signed memorabilia from the Calgary Stampeders, Calgary Flames, Vancouver Canucks, Medicine Hat Tigers and Medicine Hat Mavericks. Gift certificates by the dozen. Artwork, clothing, photography, jewelry, pet food, concert tickets, you name it. All told, 122 items.

I believe the poor economy actually helped. Whereas big-money auctions require you to put out a lot of money with little chance of winning, with ours you could reasonably expect to spend $50 and get a $50 gift card, or something worth more than that amount. The timing was pretty good for Christmas shopping, and of course you get to feel good about giving to charity. For businesses, if every place gives something small it may not seem like much to their bottom line but combined, it becomes something incredible.

The auction happened within our #Dominicstrong Facebook page, structured as a photo album where every photo is an item which you bid on by commenting. Needless to say, my phone went beserk when the auction began and never really shut up. I'd wake up to 90-some notifications every morning.

It's all worth it, of course. I just got the last payment done tonight, and our total, incredibly, is $10,005.

Well, actually it was $34 less than that, but I started telling a couple people we were a few bucks short of five figures and a couple random donations came in.

Converted to US dollars it'll be around US$7,500, which combined with funds already raised from the team puts us at more than US$11,000.

A huge thumbs-up to everyone who helped, be they businesses or individuals who donated items, folks who bid on items (whether you won or not), and even anybody who shared information about the auction. Every dollar from the auction gets donated to the hospital, and every little bit helps.

Now we need to get the rest of the way to our goal. It's time to ask people who donated a year ago if they'd consider helping again, whether in Dom's memory or because there are so many other kids who get help at the hospital.

Oh, and we're going to do a gender reveal for our baby during our Extra Life game day at Medicine Hat Lodge Nov. 5. We had planned to reveal right here, but the baby didn't co-operate at the last ultrasound. Another is scheduled for just prior to game day. Donate anytime between now and then to either of our donation pages (http://www.extra-life.org/participant/sean or http://www.extra-life.org/participant/trish) and include a note saying boy or girl, and you're entered into a draw for a yet-to-be-determined prize.

Also, watch the Facebook group or the #Dominicstrong hashtag on Twitter as we have some other things to give out based on donations.

We're not even finished delivering items this year, and already work for next year's auction has begun. I'll even tell you what the first item will be: The exact same shirt that I got signed by a bunch of celebrities at the Calgary Expo this year. The auction winner, Jen, has donated it back to us and I plan to get more signatures on it, and we'll try to sell it again in 2017. What a great start.

Monday, 12 September 2016

Putting in the work


Chemotherapy every day for months, and a lifetime sentence of always wondering if it'll come back is often a best-case scenario for kids diagnosed with cancer.

There are a lot of people working in hopes one day it doesn't have to be that way.

There's the scientists and doctors, developing new treatments that don't have as much chance of killing the patient as the thing that's killing them already.

There's the hospitals and health care foundations, trying to give those people every opportunity to make a breakthrough, and meanwhile providing the best care they can to patients and families already dealing with disease.

And then there's the rest of us, lifting both groups up with all we can.

Sometimes, you can be part of multiple groups.

I've seen nurses and doctors lead fundraising drives, patients become oncology staff, and foundations drop everything they're doing to support a child's lemonade stand that will make not even a quarter of a per cent as much as a big company donation.

For the group of cyclists going across Canada in three weeks, their trials pale in comparison to cancer patients. But to most of us, riding a few hundred kilometres a day seems superhuman. On Saturday morning Trish and I got to see them off on their fourth day - and it was special for a few reasons.

The most obvious reason was that not one, but both of my sisters are on the Sears National Kids Cancer Ride this year. Erin signed up long ago, then Shannon jumped on board after the two of them didn't make the cut for Canada's Amazing Race TV show. Together they've raised nearly $60,000 this year. They showed us the semi truck where they sleep each night, adorned with photos of Dominic.

If you're interested in following them or donating, here's Erin's page and here's Shannon's. They're also both blogging and taking lots of pictures along the way.

Two years ago the team got to meet Dominic, and gave him a jersey which now hangs on our wall. Last year Erin rode in with the team to Medicine Hat the day before Dominic's memorial service. At the Sears store, there was a tribute to a girl from the local college's volleyball team who was battling cancer.

This year she couldn't be there to see the riders.

She was too busy playing volleyball again.

Kaila Gavel was Medicine Hat College's rookie of the year in 2014. Then the Prince Albert, Sask. product was diagnosed with Hodgkins lymphoma. The community came together for her last year, wearing purple and giving her every bit of support they could.

She wanted to say thanks to the Sears riders, but because the team was in Montana for pre-season play I did an impromptu interview with her.
I played the interview for the riders. I think it's important to see that not every cancer story ends in heartbreak. Far too many do, but stories like Kaila's are needed wins to keep us motivated in the fight.

Erin did the dedication for that day's ride, sharing Dominic's story. They then made great time - I like to think he was the wind at their backs.

The rest of the weekend, Trish and I hunkered down and worked on the upcoming online auction. The mini golf event at Hooplas was pushed back to next Sunday, Sept. 18 (11-2) due to bad weather, so we contacted dozens of sources who might want to donate an item to the auction. By the way, we've said this before but if you want to donate an item, simply email donations@dominicstrong.com.

Was it as hard as riding a bike for hours on end? Of course not. But the more work everybody puts in, the more support we can give, the better it is in the end.