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.

Tuesday, 6 September 2016

My little heart


Some people know and some don't. Some have seen me absent mindly playing with it and asked what it was. Some I've explained the whole story to, and some I just say it's like a worry stone that I have when I think about Dominic. 

Here is the whole story…

When Dominic passed away some people from the hospice care team were there with us. They checked for vitals and confirmed that Dominic had passed. They told us to take all the time we wanted and sent in a couple of nurses to bath Dom and get him dressed in new clothes that I picked out for him. While the nurses were doing that, a lady with the hospice team came in and showed me a bag of little ceramic hearts. They were different colours and had different little designs in them. She explained that I could pick out two hearts if I wanted to. One was to be given to Dominic and one for me to keep. It was a way for me to have something small that I could keep on me as a way to connect with Dom. I choose two that were the most alike. After the nurses were finished dressing Dom, I sat and placed the heart I was going to keep in Dom's hand and the one for him in my hand. I held his hand for an hour or so and put all of my love into his little ceramic heart. As long as I held his hand, it didn't get cold. 

Finally I asked Sean to call them in and tell them we were ready for the funeral home to come and get Dom. When they arrived with their little stretcher I picked up Dom and his favourite blanket from his hospital bed and placed him on the stretcher. You could tell the guy was a little startled that I had moved Dom, but this was the final time I would carry him. I switched the heart in our hands and put his in his hand and kissed him one final time. As we watched them take him away, I held so hard onto my little heart. 

The next day we went to the funeral home to sign the papers and make decisions. The funeral director handed us a little bag with the ceramic heart in it and Dominic's teething necklace. He had always had a teething necklace since he was just little and I felt he should keep it with him. We asked if it could be placed with the ceramic heart in with his ashes, so he would have them. They agreed. 

A couple of months later Sean knew how attached I was to this little heart and worried that I might lose it and how I would react to that. He suggested I keep it in my jewelry box or see about putting it on a necklace or something. I said nope and that I wouldn't lose it. Well so far I haven't lost it and keep it on me at all times.

I did have a scary moment where, as you can see if you look at it, that I dropped it and it broke in half. I was devastated and fell apart. I called Sean and he came running up stairs and took it from me and said he would fix it. He took it downstairs and glued it back together for me. He said "now the little heart is broken, just like yours, but it can be glued back together." I don't know what I would have done without him in that moment. I couldn't think of anything when it had broken and I just fell apart. But luckily Sean was there to pick me up and put me back together again like he has so many times in the past year.

The point of this long story is to show you one more of the amazingly simple, but important things that these hospitals do to take care of the families of sick kids. It is a simple cheap little ceramic heart, but it means the world to me. It is something I will always have and carry with me forever. These hospitals are so important for the big moments and well as these little simple moments. 

This is another reason we do what we do to support these hospitals. Costs like the little ceramic hearts are not covered by the government budgets. Although this little heart did not costs a lot of money, this is only one example of the many little things that they do and the cost do add up. Without fundraisers like Extra-Life and the amazing programs they support I may never of been given this little ceramic heart at a time when I needed something I could hold on to to give me strength.

Please help us support these hospitals programs by supporting our Extra Life fundraiser. Every dollar goes directly to the hospital and is used to help families like ours when they need it the most. 💕👍🏻

Thursday, 1 September 2016

September


"As my memory rests,
But never forgets what I lost,
Wake me up when September ends"
- Green Day

I was so proud when I figured out how to turn off Facebook's memories.

Silly me, thinking I could avoid any of it.

As September 3 rushes forward, everybody seems to have Dominic on their mind again. But he's never wavered from ours. His light has remained on in his room for a full year, that dim blue glowing on the urn in his crib.

Soon it'll be time to move it and make room for his brother or sister.

Children play at the park where his memorial bench sits, their laughter alternately heartbreaking or heartwarming to hear. But we haven't spent much time on our deck this summer anyways.

I don't want to remember what happened on this day a year ago. I don't want to replay the 911 call, seeing my son turn blue as we diverted to a closer hospital, the staff there so completely useless Trish had to draw blood from him. Or the doctor at our final destination telling us this was it, and saying our goodbyes before he found some more energy to hang on for the night.

His last FaceTime chat with his aunt Erin, who today is on her way to Vancouver with my other sister Shannon to begin a cross-country bike tour in support of childhood cancer. All these lasts. No more firsts.

I'm happy with the memories I have of my son. A year ago yesterday he had those two hours at Disney World, living up what turned out to be the last day he ever saw outside a hospital. When his blood counts came back that afternoon we were told we wouldn't have to come back the next day for a transfusion. We'd head to Universal Studios instead.

So it didn't happen. It's OK - he was done. He did so well, getting us all the way out there. He earned those angel wings.

His time may be over, but his legacy is not. September is childhood cancer month, and our charity efforts are building momentum. It's how we parent Dominic now - raising awareness and giving back to places that take care of kids and their families.

We've had some more loss recently. Our dog, Megan, succumbed to cancer herself. I guess Dom can take her for walks again. We had Meg for ten years, and she was a lot of work to take care of in recent months. It was her time, and now we're more thankful than ever we got our other dog Rifle a couple of years ago. Having no dogs and no kids in the house would've been hard on us.

One quick reminder: Next Sunday, Sept. 11 is the Second Annual #Dominicstrong Memorial Charity Golf Day at Hooplas in Medicine Hat. It'll be a ton of fun and all money raised will go towards our Extra Life campaign for the Alberta Children's Hospital. Food trucks, mini golf, and much more.

Wednesday, 17 August 2016

Smorgasbord


Normally when I write a blog I have one thing in mind. Today I've got about 10.

Why haven't I written about them before now? I haven't been doing well. The last couple months have been awful and I feel like I'm failing to hang on. Hopefully by focusing on Extra Life this next little while I'll gain some momentum, but staying positive has not been easy.

Let's start with Extra Life. On Saturday, Aug. 27 at Medicine Hat College we'll be running a booth during the Medicine Hat Fan Expo, spreading the word about the gaming charity we are both participating in this year. We'll even do a Pokewalk (group of people playing Pokemon Go for an hour) from 11 a.m.-noon.

We're also looking for donations on both our Extra Life pages (http://www.extra-life.org/participant/sean and http://www.extra-life.org/participant/trish) and donations for the #Dominicstrong online auction which is set for Sept. 29-Oct. 2 through the Facebook page. We've had a couple items donated so far and hope for a bunch more in order to raise a ton of money for the Alberta Children's Hospital that weekend.

Blizzards

Last week we piggybacked off the Children's Miracle Network Hospitals fundraiser with Dairy Queen to help our Extra Life fundraising. Miracle Treat Day let folks buy a Blizzard and have money go to CMNH, but I upped the ante by offering to deliver a Blizzard to anyone in Medicine Hat who donated to my Extra Life page.

Sure enough, one kind soul asked that I bring a Blizzard to someone who cared for Dominic in hospital. So I did. Kara, one of his main nurses when he stayed in Medicine Hat, was happy to receive it. Lots of love was spread that day. Another person we thought of but didn't know how to get in touch with wound up being at the Dairy Queen while we were there. It was serendipitous.

Heart

Today we got to listen to our baby's heartbeat for the first time. I've included a four-second clip here but basically, all is well on that front. Well, Trish's nausea isn't great for her, but it's exactly how she was with Dominic. We should be so lucky to have another pregnancy like his.

The Park

When we arranged to have a memorial bench in the green belt near our house for Dominic, there were a couple things to play on nearby. Then, six weeks ago, workers showed up and began digging just outside our back gate.
For a while we just waited to see what was going on. Then I finally called the city to ask. They were putting a playground there.
Even now, I'm a bit upset. We lost a child and now the city puts something mere metres away from our property so that all the happy kids can laugh and play right in front of us. Why not build it 75 metres further away where the memorial bench and other equipment is?
In any case, it's fine now. Trish is pregnant, they moved the memorial bench and the playground itself is essentially now a memorial. Years down the road it'll be great to have a place our child can enjoy, so close to home.


Sad news

We've made many friends as a result of what Dominic went through, but seeing another family deal with a similar journey to ours is incredibly sad.
Alexander Sox is four years old. He's got brain cancer. His family just got back from a wish trip to Orlando when they were told he's terminal.
I wish we didn't know the kinds of things they're dealing with. I wish nobody did. It's another reminder that the charity work we do is so needed to support kids like him.

More cancer

Days before Trish's first ultrasound, our dog Megan was having some issues. Her cheek looked infected and her eyes weren't doing well.
Turns out she has cancer. She's got weeks to live. We got her when she was four and have had her for eight years and certainly knew she was getting old, but for it to happen now is a kick in the gut. She's doing pretty well all things considered, but the tumour won't be getting any smaller and when she stops eating or seems in too much pain, we'll have to say goodbye.

Big rides

In a couple weeks both of my sisters will ride through Medicine Hat as part of the Sears National Kids Cancer Ride. Erin had committed to the ride a while ago, and has raised more than $25,000. Then Shannon decided to join her. She's already raised $15,000. They both did provincial rides, which will essentially be a tune-up for the cross-country trek which runs Sept. 7-24. Visit http://searsnationalkidscancerride.com/ to learn more and donate.

Monday, 4 July 2016

Someone new to love


Ten months later, the pain of losing our son is still as vivid as it was in September.

We don't feel it as often though. There's something new that's competing for our thoughts.

Trish is pregnant. Or as she would prefer me to say, we are pregnant (I refuse this term until science makes the 1994 movie Junior a reality).

We had little reason to expect this. It took six years, including lots of fertility treatments, before Dominic was conceived. Sure, we weren't using birth control and sure, once you've had one kid your body is more ready for another, but there was no planning going on here.

She told me by sitting me down at lunch, eyes closed, and dropping the pregnancy test into my hands. We've told a few people since then, notably friends who would've noticed had Trish not been drinking on her birthday.

I think we eventually would have tried for another child, but hadn't had the conversation yet. You don't want to feel like you're dishonouring the child you lost by trying too soon.

But damn, does it ever feel like the world is paying us back a bit.

I should temper the excitement by saying this pregnancy is early. We are acutely aware of the two miscarriages we endured before we had Dom; as it was with him, I don't think Trish will truly believe she's got a kid until it starts kicking. She didn't want to announce this one quite so soon, but my counter is that if it fails, we won't have to hide it which only stigmatizes miscarriage.

Naturally, we also wanted to share the happy news with everyone who's followed our journey and given us so much support. It's a relief to have something happy to talk about that isn't laced with pain.

He or she should be due sometime in February. We'll have to redecorate Dom's room for them. Where will his old stuff go? Well, there are lots of reminders of him all through the house anyways.

There's room for someone else to love, too.

Sunday, 29 May 2016

On a Gala Scale

Ever see a fundraiser come up with some gargantuan total on one night and wonder "how did they do that?!"

The short answer, it seems, is "rich people." And it's a reminder that when we raise far less money seemingly doing far more work, we need to realize it's no less important to the bottom line. Even if, empirically, it is.

On Wednesday night we were in Calgary for the latest in what has seemed like a tour's worth of speaking engagements. Not a bad thing, just something that's happened as organizations we're involved with realize we're happy to share Dominic's story in hopes it'll help their causes.

This was the Children's Wish Foundation Gala. Our experience with them previously came at the end of Dom's life, as they moved (figurative) mountains to get us to Florida last year, only to have him die during the trip.

We've said often that it was as though he took us to the happiest place on Earth to be together as a family one last time. And here we got to tell that story to a group of mostly businesspeople with ties to some big companies.

It was a fantastic event. We saw trip co-ordinator Sarah Bragg for the first time since she gave us our backpacks and T-shirts last August, and area director Kyla Martin for the first time ever. They were both instrumental in making the wish happen.

The 400-seat event was beautiful, featuring displays of the sort of trips kids go on, a silent auction, dinner and a handful of interviews with wish trip families.

The real stars were the kids: Aboudi and Mable, in particular. You probably know of Mable - she of Spider-Mable fame after saving Andrew Ference of the Edmonton Oilers from the evil Mysterio last year (http://globalnews.ca/news/2243358/spidermable-to-the-rescue-elaborate-plan-underway-to-grant-wish-of-young-edmonton-girl). Aboudi's wish trip was a Disney cruise, and we got the pleasure of sitting with his family for dinner. They helped broadcasting personality Dave Kelly host and were simply wonderful. So much energy.

But there were some sombre moments too. We were caught by one of the displays - a video of Diamond meeting Prince William and Princess Kate a few years ago. Diamond passed away while Dom was in hospital, and we knew her parents.

And suddenly, there they were, at the event. They're doing well, which was great to see. Nobody can relate to what we've been through like other families in the same boat, so while sad it's nice to talk with them once in a while.

It took all of two hours for that event to raise more than $60,000. They haven't announced a total but there was a live total on a big screen at the event that kept jumping by ridiculous amounts and the last time I checked it was $58,600 - long before some vice-president at Shaw Communications threw in $5,000 on a whim. I'm sure that total is far lower than what they actually raised.

And to think, an average wish trip costs about $10,000. And they've got 151 of them in the queue for the next year.

I think the summer will be slower as far as speaking engagements go, which is probably a good thing. We love doing it but it'll be nice to relax for a while - and focus on our own fundraising.

A batch of #Dominicstrong T-shirts were mailed out last week, and we raised almost $1,000 for Helping Families Handle Cancer through them all. Hardly the kind of dough the Gala raised, but we know it goes to an important place. Any charity will tell you every cent matters.

I should also note a couple fun developments regarding my involvement with Extra Life, the gaming charity that I raise money for the Alberta Children's Hospital through. I'm now a volunteer moderator for their community forums (http://community.extra-life.org/forums) and will live-stream games every Sunday night from 7-9 Mountain time on their Twitch channel (https://www.twitch.tv/extralife4kids). It's all about raising awareness about how easy and fun it can be to help out your local children's hospital! If you want to know more, there's an Extra Life page right on this blog with plenty of links and information. Would love to have more people join Team #Dominicstrong this year.

Monday, 16 May 2016

What's next?

When the wildfires in Fort McMurray happened a couple weeks ago, I knew what would come next.

It's the same thing Trish and I experienced almost nine months ago.

Love. Support. People saying "we are here for you, anything you need!"

In the moment people want to help. It's amazing. On Saturday alone in Medicine Hat there were two charity barbecues raising money for Fort McMurray relief. Both were huge successes.

The problem is, there's always someone or something else that needs helping. What happens to causes and people once the help moves on to the next one?

Some are so big you can't help but continue to support them. Terry Fox is a good example: Terry died 35 years ago from his cancer, after bringing all of Canada together in his quest to run coast-to-coast raising money and awareness. Now, every year, there's a worldwide charity run in his honour. Thousands of communities participate. Millions of dollars are raised.

Other tragedies fade quicker. Before two weeks ago, few Albertans had recently thought of the fires that destroyed much of Slave Lake in 2011. You might think of 9-11 only once every few months if you didn't have a direct connection to it. And that friend down the street whose child died 20 years ago? Who outside their family can say when it happened, or even why the child died anymore?

So many of us are emboldened by keeping the memory of our loved ones alive long after they're gone. I don't remember who said you live as long as people utter your name, but it's true. And naturally, I want to do everything I can to make sure Dominic is remembered long after I'm gone.

It's a bit of a foolish ambition, really. Because there will always be a new Dominic in people's lives. A new tragedy is always unfolding. People move on, memories fade, that's life. And the truth is, from a fundraising point of view, you need to keep finding new tragedies to inspire people to give, otherwise the stream of money dries up.

It's not easy to see it fade when you're close to it. The last blog I wrote has 290 page views as of my writing this new one. When Dom was alive, new posts would break the 1,000 mark in days.  Last year we raised $46,000 - US! - as a #Dominicstrong team through Extra Life. Right now it's at $2,165 and our goal of $20,000 this year feels impossible.

When I spoke in Lethbridge a few weeks ago I didn't expect to be back anytime soon. But I've committed to helping run a panel about Extra Life at the Nishikaze (anime) convention at the University of Lethbridge next Saturday, May 21 at 5:30 p.m. I'm as motivated as ever to give back to the Alberta Children's Hospital.

This past Saturday Trish and I spoke at our local Costco to a group of about 15 employees. They ask at the till whether shoppers would be interested in donating a couple extra dollars to Children's Miracle Network, and it's good to remind them of why it's so important and how valuable those dollars are. There's a nice setup near the cafeteria at the front of the building with an incubator, CMN promotional materials and the familiar balloons customers can sign when they donate.

We then went shopping, and at every till was a poster - reminding folks they can also donate to Fort McMurray relief. And for one, horrible second I was angry it wasn't mentioning the hospital fundraiser we'd been brought in to talk about.

It's OK if things fade. Doesn't make them any less important. There will always be something big at the forefront of people's minds, and it's not reasonable to expect them to choose what you're passionate about at something else's expense.

We then went to one of the Fort McMurray relief barbecues. We almost didn't stay to eat our food after paying. There were kids and families everywhere. Bouncy castles and face painting.

He would have loved it.

Monday, 25 April 2016

Ennui


A couple weeks ago I looked out on to the green belt behind our house and saw something amiss with Dominic's memorial bench.

It's a couple hundred metres away but you can always see the white of the plaque set against the blue bench. And I was pretty sure it wasn't there.

First thought, rage. Who would do such a thing?

Second thought, reason. Nobody would intentionally do that. It probably just fell off.

Third thought, ennui. I'll be sad today and deal with it tomorrow.

It's back up now, but my listlessness lasted a week before contacting the city. They came out right away and fixed it. Hopefully with stronger glue.

It's been a long month, but we're almost through it. Tax season is rough for Trish, who's working overtime six days a week, and it's rough on me because I'm a big baby and miss her to pieces.

And yet, the highlight of my month so far has been the day when I was furthest from her.

On Saturday, April 23, I went to Lethbridge to share Dominic's story at Helping Families Handle Cancer's art auction. It was a different sort of speech, because few in the audience knew who I was, so I wrote it. I've told his story enough times that I could probably talk off the cuff, but I forget how cathartic it is for me to write, too.

My sister Erin helped put the event together, along with a fantastic group of volunteers and of course HFHC founder Carie and her family. Erin's phone overheated while trying to tape me so the video below is missing a couple minutes of the speech, but if you're on this blog you can likely guess what I said: Helping Families became part of our community, and we're forever grateful.

I wish I'd been able to meet the other family featured Saturday. Alyssa is a 17-year-old battling a rare form of cancer, and hoping one day to get back to weightlifting which she's incredible at. Alas, she was at a volleyball tournament and couldn't be at the event, so we got to hear her story read second-hand. One of the drugs recommended to treat her cancer isn't covered by any insurance, but it still costs $1,200 a month. So HFHC is helping to cover it instead.

We're still taking orders for #Dominicstrong dry-fit shirts until May 1, and all proceeds will go to Helping Families, which assists families of kids with cancer across southern Alberta. They raised more than $14,000 Saturday night, which is amazing, but keep in mind they also gave out more than $145,000 last year in assistance.

I had some great talks with folks at the art auction after my speech, and as usual the common theme was them telling me how strong I was for sharing it. The truth is, I'm incredibly, irrevocably broken. How do you do it, one couple asked. My answer is that lots of people find a way. You'd never want to go through it, but what other option do you have? You keep putting one foot in front of the other, but as long as you keep moving, no matter how slow, you're still moving.

And one day maybe you'll run again.

Saturday, 2 April 2016

Finding ways to give back


It's been almost a month since the big trip and all we've been doing is go, go, go.

But some moments slow me down. Some make time stand still. And I kind of long for the hurt a bit, in a twisted way. I need to remind myself how much this hurts.

One moment came when I was looking out the back yard to the bench we had put up for Dominic. I watched as a mom followed three kids over to the play set next to it. She walks up, prepared to sit, but instead sees the plaque commemorating his life.

She sits down. She pulls out a tissue. I like to think she hugged the kids extra tight that day.

The past 24 hours I've run into two people who remembered my son, but somehow hadn't known he was dead. Seeing their horrified reactions as I do my best to calmly break the news reminds me of how many times I had to do that in the weeks that followed Sept. 3, 2015. It doesn't get any easier. And I'm glad to feel it, because some other days I feel dead inside.

Trish is back at work, at a new job. I don't see her much during the week. Lunch and dinner. Thank goodness we live in Medicine Hat, where even though our work schedules are opposite of one another we can still be together twice a day. Two-minute commute for me, five minutes for her. I'd be a wreck without her. Sometimes I am anyhow.

We've had so much support and are so lucky for it. Then we hear about a family who we've got to know whose child's cancer has relapsed. All that support that we've got, we need to share it. You can't imagine what that moment is like when the doctor says "I'm sorry." All you can do is be there in any way you can for them.

And that's why our charity efforts will continue this year. In spite of the economic problems facing the oil and gas sector that drives our province, kids will not stop getting sick and if anything, their families will be in even more trouble with fewer incomes to support them.

Helping Families Handle Cancer might be based in Calgary, but so is the Alberta Children's Hospital. Both provide critical assistance for kids and families throughout southern Alberta. And those are the two charities we will continue to focus on.

Helping Families gave us gift cards for gas, shopping and other essentials when Trish couldn't work last year and her employment insurance had run out. We survived for about 18 months on one income thanks to previous fundraisers and what that charity did for us.

They're holding an art auction in Lethbridge Saturday, April 23 at the Galt Museum and I'll be there to speak. If you're in the area please consider supporting the event - tickets are available at helpcancerfamilies.com.

In addition, we are announcing today that there will be a new run of #Dominicstrong T-shirts! They will be the fancy dry-fit material, cost $30 plus shipping (add $2.10 for XXL and up), and the more we sell the more we can donate back to Helping Families. At minimum there will be $15 per shirt donated. But you've got to order by May 1 - email smrooney@gmail.com with exactly what you want and I'll work it out with you. Full details are on the #Dominicstrong Facebook group at https://www.facebook.com/groups/dominicstrong/.

Extra Life, of course, is the way in which we support the hospital. Every penny donated through my fundraising page extra-life.org/participant/sean (or Trish's at extra-life.org/participant/trish) goes straight to the hospital foundation - just keep in mind that they only take donations in US dollars and require you to do the conversion beforehand.

Towards the Extra Life cause we have a few things planned. One is the official 25-hour gaming marathon, Nov. 5 and 6. Once again we'll be at the Medicine Hat Lodge, which has been fantastic in making sure we've got room to play in. Second is the online auction, which our amazing friend Kristine ran last year and has committed to help with again. It'll run Sept. 29-Oct. 2 through the Facebook group. Go there for information on how to donate items. Finally, Hooplas Family Entertainment Centre will have a special Extra Life day Sunday, Sept. 11 - think mini golf, board and video games, food trucks and more.

I know that's a lot all at once. I just haven't made the time to sit down and write. Here it is, 3 a.m. on a Saturday morning. We're still grieving, the dim blue light in his room remains on but I haven't gone in there in two months. But I still talk to him.

We honour him by doing these things. Our grief is a bit easier to deal with if we're helping someone else.

Saturday, 5 March 2016

Lifted


As we walked alongside the Garden of Hope at Give Kids the World Village Friday, a monarch butterfly sprang from plant to plant beside us.

I reached for my phone to get a picture, and we both fixated on it, knowing this might be a moment we'll never forget.

And it flew away.

The journey back to the place where we stayed for Dominic's wish trip six months ago was brief, tough, but necessary. It was the right place to go on our last day of vacation in Florida. We saw where they'd put his star, among more than 140,000 representing every child to visit on a wish trip. We hugged, spilled tears, then moved on to have a sundae before we left.

We walked over to the villa where we'd stayed all of three nights. Nobody was staying there at the time so I posed for a photo. Trish wanted no part of photos; it was all just too sad.

We were so desperate for meaning but also OK if it didn't arrive. The whole two weeks here was meaningful enough, honouring him and creating some wonderful new memories with new friends.

And yet, Dominic had one more trick up his sleeve.

The Space X team had tried and failed to execute a launch three times in the prior 10 days, their private company working with NASA to break new ground in space exploration by making a rocket that will one day recycle its boosters by having them navigate safely back to Earth after helping propel ships into the stratosphere.

A few of the folks attending Extra Life United last week had even missed some of the event to drive out for a launch, which backfired when it was scrapped at the last second.

There was a fourth launch window slated for Friday, 6:35 p.m. And, thanks to our stay at Give Kids the World having been brief, we had time to drive out just in case it happened.

We arrived on a stretch of highway where dozens of other cars had pulled off. The view across the water to the launch pad 16 kilometres away was unimpeded, so good a local TV cameraman was there to get footage for the nightly newscast.

Windy, cold even. But as the minutes counted down and the sun began to set I had a feeling.

Sure enough, Dom gave us the sendoff of a lifetime. Like a bright ball of sun the rocket lifted into the sky, as if that night had been chosen by fate.

We packed a lot into the past two weeks, and now it's done. I think it's been good for us but that's not to say I feel in any way healed.

But I've smiled a lot, cried a lot, felt a lot, and am glad for it all.

We had one more blessing on our way home today. Of all the people we'd run in to at the airport, the children's hospital champion from British Columbia, Aidan and his family.

Including his mom Tina who gave Trish the gold ribbon with the word hope inscribed on it.

We are so lucky. Dom is still looking after us.

Wednesday, 2 March 2016

Everywhere


Six months ago today I slept with my son on my chest, as he took what would prove to be his final breaths.

He's gone, but he's still here in so many little ways.

Once Extra Life United ended Friday and our new group of friends went their own ways back home, Trish and I got started on the second week of our trip here in Orlando.

On Saturday we checked out of one resort and in to another, seeing the Enmon family once more. If you recall, they were the ones whose daughter Victoria inspired the Extra Life movement.

My favourite moment from that day was seeing two of the champion kids from the Children's Miracle Network Momentum conference hug for what seemed like an eternity, neither one wanting to let go. I felt that way for our Extra Life group too, and I know it was mutual.

Saturday night we had dinner with friends we'd only ever met for a half hour. Another family struck with loss from childhood cancer. Seemingly so little in common with us except for the most important thing, which meant we could've talked all night.

On Sunday we sat by a pool for the first time on our vacation - there just hadn't been an opportunity until then. And we spent time with another family, ones who'd come down to Extra Life United with #Dominicstrong shirts even though they'd never met us before. Another incredible part of our community.

Friday, Monday and Tuesday evenings were spent at Disney parks. We hung out with some of the remaining Extra Life group Friday at Hollywood Studios (highlighted by any and all things Star Wars), did Epcot together Monday and Animal Kingdom Tuesday. Oh and we golfed nine holes Tuesday. We've decided if we can do it, we're going to. Why not.

Yesterday was a visit to Kennedy Space Center, which brought out the little boy in me. We might get back there Friday as Space X has a launch planned which has been delayed three or four times over the past couple weeks.

And at every bend there was something letting us know Dominic was watching.

At each park, we constantly made it to rides and performances at just the right time, as if the universe were bending to our will to have as much fun as possible.

At Epcot there was Alice, posing for photos with child after child. Alice was the first character Dom met in his two hours at Disney World; the one he charmed. You could say she was his last girlfriend.

At Animal Kingdom we showed up for a carnival-like show with characters from The Lion King literally seconds before they opened the doors to let the audience in. Dom got to see a special rehearsal of The Lion King Broadway show last year. When they started singing Circle of Life I couldn't help but shed a tear and hold Trish's hand a bit tighter.

Then yesterday, at the space centre, an IMAX film about repairing the Hubble telescope began with the song Somewhere Over the Rainbow. Specifically, the version by Israel Kamakawiwo'ole which was also used in the video played at Dominic's memorial. Again, a squeeze and a knowing glance.

I know some people believe a person's spirit has the capability to make all of these things happen, but I'm more pragmatic about it. Wishing something to have a connection so much that you inevitably spot it. Either way the moments are special when they come.

Today we're off to a baseball spring training game where we'll see my parents, who have a winter home in Florida but hadn't been there much during Dom's illness.

I'm sure we'll notice something meaningful on this latest anniversary.

I'd be disappointed if we didn't.

The wish trip will finally come to an end, but, as was the plan six months ago, we will gain so many memories from it. New, happy ones to add to all the sadness and hold our new lives together.

Friday, 26 February 2016

Thumbs up


Dominic's trademark thumbs up only showed up in the last six months of his life, but it's come to mean so much for us and our community.

Its significance has exploded these past few days.

When taping interviews for the video to be shown here at Extra Life United in Orlando, I told of how Dom responded in his final hours with a thumbs up when I asked him to wait for mommy. I couldn't get out the words, instead giving a thumbs up of my own to finish it.

When we walked off the stage at Tuesday night's opening ceremonies, I gave the thumbs up and a bunch of our new gaming friends responded in kind.

Suddenly, every photo we took with them — and there were many — required everyone flashing thumbs.

When the entire 135 or so of us (about 120 gamers plus organizers and Tori's Angels, volunteers who incredibly came to help instead of play) gathered for one group photo, there were the thumbs again.

I'm proud to say I called the winner of the gaming competition weeks in advance. I played the game Rocket League with Matt from Tennessee earlier this month and tweeted that he's probably the front-runner. Well, he wound up winning upwards of US$50,000 for his local hospital, barely edging out Jamie from California who earned more than $25,000.

That was the competitive highlight, and it was amazing. Both finalists' hospital representatives were in attendance cheering them on, along with all of us of course. The emotion of knowing what they'd done for the kids was written clear as day on their faces.

Then we got to meet all 64 champion kids at a pin ceremony. Trish and I couldn't get to them all because we stopped and talked and hugged and cried with so many, wanting to explain what we were giving them in return for the pins and signatures they gave us.

We gave the same ribbons from Dominic's memorial service made by Cherisse with the thumbs up on them, hand-drawn again by Trevor. Plus I made business cards with the #Dominicstrong logo and contact information. On the back side? The same photo that the video ends on. We ordered them before we'd seen the video.

One moment from that ceremony stands out. I was excited to meet Aiden, British Columbia's champion child, because last year at this time we were in Vancouver and Dom got transfusions at the B.C. Children's Hospital there. Trish later met his mom, and shared our story.

Her first reaction was to take off a necklace she had on and give it to Trish.

It's a gold ribbon with the word hope inscribed on it.

We had so much hope for Dominic. It was all shattered six months ago. But seeing the kids here this week, we've been reminded how important hope is, both with them but also with us.

Extra Life United ended with the medal ceremony this morning to conclude the Children's Miracle Network Momentum conference. Those kids thrived in the spotlight, one getting up from his wheelchair to stand on prosthetic legs and another doing a handstand on stage with host Nick Cannon.

We have so much to hope for in our own lives after Dom. We have so much to be inspired by these kids.

We are forever better for having been here.

Thursday, 25 February 2016

You win some, you cheer some


Competition began Wednesday morning here at Extra Life United, but the champion kids still stole the show, at least for Trish and I.

While we both won some money by each making the final table for a game, our greatest moments of the event's first full day were interactions with the real heroes here at Children's Miracle Network's Momentum conference.

Trish decided to randomly stop and chat with one of the kids - easy to spot because they have special red shirts. They hadn't heard of Extra Life before so she gave them the spiel, noting how we'd raised US$46,000 for our hospital through #Dominicstrong.

As expected, they're having an incredible time this week, cheered everywhere they go and garnering celebrity treatment. Trish made sure to invite the family to play some games with us Thursday night.

At the end of the conversation, the child's mom thanked Trish.

My moment game in the middle of playing a card game called Love Letter. Our hospital rep Meghan came to the table with Peyton, the Alberta Children's Hospital champion child. She's six and spent more than 40 days on extracorporeal life support after contracting a deadly infection and toxic shock syndrome.

Knowing her bedtime might not work out to play games Thursday night, I asked if she wanted to play right then and there.

"Yes," she replied sweetly.

So we stopped our game and brought out Connect Four, which it turns out Peyton is an expert at. She beat fellow gamer Lora and I, and had the biggest smile.

I lost at Love Letter, but it didn't matter much. I had my prize in that time with Peyton.

We did, however, win a bit of money too. In the tournament's opening game I won my table of Blokus, a Tetris-like puzzle game where you try to place all your pieces on a game board. I finished third in the final, winning US$525 for the Alberta Children's.

Trish won her table of Liar's Dice, a dice-predicting, honesty-testing challenge. Clearly not wanting there to be any bad blood between us, she also managed a third-place finish in the final, live-broadcasted table.

Together we won US$1,050. This morning we both lost out in Settlers of Catan tables, and won't advance to the afternoon's overall top-eight round but are thrilled to bring something home for Peyton and all the kids at the hospital in Calgary.

Wednesday, 24 February 2016

Laugh play cry


Competition hasn't even begun and we're already overwhelmed. Last night was the kickoff for Extra Life United here in Orlando and we got to share a new video, this one produced by Children's Miracle Network Hospitals.

Because I know lots of people back home want to see it, I won't waste any time. Here's the link: https://vimeo.com/155881693

Don Fyffe and his crew did a magnificent job combining laughter, tears and hope to share with anyone involved with Extra Life, or anyone who might not know what it's about.

What you don't see in the video is who introduced us, and what happened after. Jo Ellen and Victor Enmon are the parents of Victoria, who's the inspiration behind Extra Life. Tori, as she was known, had a remarkably similar story trajectory to Dominic: Diagnosed with leukemia, two failed bone marrow transplants, an incredible attitude throughout, but taken too soon by a fungal infection.

Her parents interviewed us on stage after the video presentation. What's it like being back in Orlando six months later? I'd say 95 per cent wonderful, five per cent disastrous. It's OK to embrace the times that tear you down.

We have met so many amazing people, and I know we're going to meet more. There are upwards of 120 people competing in PC, console and tabletop games with us the next two days, with money up for grabs in each of four sessions for our local children's hospitals. You can watch it all unfold at http://www.twitch.tv/extralife4kids on live broadcasts.

Two of the other kids on stage Tuesday night added to the inspiration. Champion kids Jessica and Joe told their stories, both of perseverance through disease and giving back, through charity. Joe even participated in the Extra Life 24-hour game day last year, raising $3,000!

They announced the rules, the games (Blokus, Liar's Dice and Love Letter today, Settlers of Catan tomorrow in the tabletop track), then turned us loose.

I figured that was enough excitement for one evening, but there was one last surprise. Sitting outside at a table with a bunch of Extra Lifers, we were approached by Noah, a champion child who I know better than most. My chair almost hit the ground as I sprung up to high-five him.

Noah and I were neck-and-neck in Extra Life fundraising this past year. While he's a champion child from Vermont who's had more than 20 surgeries in his eight years, Noah also has a love of video games. His Extra Life page raised more than $40,000 last year, and our pages were neck-and-neck. I often joked 'I'm taking this kid DOWN!'

Just like in fundraising, the competition at United is all in good fun. I couldn't even tell you who raised more last year, his page or mine. It doesn't matter. And who wins this week won't matter as much as the connections we forge, the memories we make together.