Florida Day 3: Magic, everywhere

The forecast was dismal.

Hurricane Erika was on a collision course with the entire state of Florida, with landfall expected Monday. Meanwhile Dominic's condition worsened, throwing up twice overnight through fits of coughing.

We planned for a day at Disneyworld anyhow, hoping against hope that waking him up three hours earlier than normal wouldn't exacerbate the problems and that he'd make it to the hospital for his next platelet transfusion by 2 p.m.

He didn't just make it there, he did it with a smile. Hurricane Dominic arrived, while Erika blew off-course.

His first stop was the theatre at Give Kids the World, where Mickey Mouse came to visit and pose for photos. Dom has no clue what Mickey Mouse or Disney is, having never seen any movies with the iconic character. But we got them together on stage and the result was magic. Thumbs up. Kisses. Hugs and smiles.

"That alone made today worth it," Trish said as we walked to the van.

We spent as much time traveling to and from Disneyworld's Magic Kingdom in Orlando as in the theme park. Half an hour driving plus a half hour walking and taking a boat to the front gate. An average visitor would get on roughly two rides in two hours, but Dom did four. Plus a few photo opps. And we did some shopping and saw a parade. All thanks to being on a wish trip.

You get a button that tells park staff you're special. You get a pass (emblazoned with the image of Genie from Aladdin) that sends you to the front of every line, no questions asked. We also wore our Children's Wish shirts for added effect.

At less than 31 inches tall and needing an oxygen supply, Dominic can't go on a lot of rides. We managed to do some simple ones where you sat back and saw a story portrayed. He and I also drove an on-rails go kart which was great.

But the fun had to end, and he was darn near falling asleep by the end of a Buzz Lightyear video game-style ride.

We got to the clinic at Arnold Palmer Children's Hospital, where we figured he would fall asleep. He didn't, and he didn't get angry at the nurses or doctors, who did a great job with him too. Maybe our happy energy helped, I'm not sure.

We got some more happy energy as he received his platelet transfusion. Though the hospital can't provide specifically-matched platelets, thus our needing to come daily, his platelet count following Sunday's transfusion skyrocketed. We literally high-fived the doctor. We don't have to go daily anymore.

The original plan Tuesday was to take it easy, as we figured Dom would be too worn out after Disney on Monday and we'd have to be back in hospital anyways.

Instead, we're going to visit Hogwarts, Springfield and Spider-man at Universal Studios. Not a hospital in sight.

He remains the boy who lives.

Note: In yesterday's blog I insinuated the hospital bills are being covered through Blue Cross. Turns out because they are planned visits, they aren't insured. That means Children's Wish Foundation foots the bill. Yikes. I can't imagine how much this trip costs. Please consider this when deciding where your donations go.

Florida Day 2: A little village

Opened in 1986 by an Auschwitz survivor-turned-hotelier, Give Kids the World in Kissimmee, Florida is an incredible place.

A couple hundred villas, each one built to look like something from a fairytale. Ours, No. 231, is a castle, decked out inside with modern amenities which make it look nothing like its age.

The kids get the master bedroom, with a pint-sized jacuzzi tub. Mom and dad still get a king-size bed and plenty of space. The kitchenette has upscale appliances, but you don't have to cook — the gigantic restaurants in the village take care of your every whim.

There's an ice cream parlour open from dawn until dusk. A big deal is made about having ice cream for breakfast. A less-stormy night enabled us to order pizza, while a gigantic mess hall-style restaurant feeds the bulk of guests. Each table has hundreds of peppermint candies inlaid into it (and under glass - dang).

Dominic could care less about food of course. He's eaten nothing but tube-fed product basically since his bone marrow transplant 19 months ago. He still drinks a bit of ginger ale or water here and there, so other parts of the park cater to him better.

Today he got up early, without crying for the first time in weeks. A volunteer saw us starting to walk his stroller to the main area and offered a ride, using a bungie cord to attach the stroller (no, Dom was not still in it). He toured us around to an awesome dinosaur-themed mini golf course, a play area that doubles as the world's largest game of Candyland, fishing pond, nature trail (featuring white squirrels) and a huge wheelchair-friendly pool area.

We stopped in front of Amberville Train Station, which houses a teen-themed indoor arcade, including a video game bar where available games are written in chalk above the counter. Outside, Dom got excited to ride in a couple mini cars — the type you'd usually throw a quarter in at a mall, but here just have a go button on. Then we hopped on a mini train and rode around twice. He loved it.

We saw the Castle of Miracles, which houses 100,000-plus gold stars with the names of every child who has ever visited Give Kids the World. Dom's will go up there later this week, never to come down. And we checked out the movie theatre, which is always showing something from Disney.

That would be enough for him on a normal day, but today we also had to make our first stop to Arnold Palmer Children's Hospital in Orlando. Unlike a Canadian hospital, parking was free and the food was fantastic. If not for the special Blue Cross coverage we get for being on a wish trip, the rest of it would cost untold thousands of dollars. He got platelets today and due to various first-time visit issues we wound up staying three-and-a-half hours. Every other day this week should take half that time, enabling us to do more fun things.

He was cranky at the hospital. He's been cranky around nurses and doctors for the past month or two, actually. Once their best friend, he's decided they are now an enemy trying to listen to his chest or hook him up to drugs and fluids.

It's another reminder why this trip is so important. We have so many memories of him in hospital settings, and so few aboard trains and horses.

Tomorrow, he'll even meet a mouse.

Florida Day 1: Hangry

It's midnight (OK, my body thinks it's only 10 p.m., but the clock says 12). I haven't eaten in at least eight hours and have no clean underwear. And no those things are not related. We just forgot to pack me any underwear.

This is Day 1 of our wish trip to Florida.

Dominic, thankfully, is asleep. Trish is out at Wal-Mart because apparently when there's lightning, we can't eat! Holy crap why did Give Kids the World tell us specifically not to eat before we showed up? They said we would be SO. WELL. FED. At this rate, only if I cut off an arm and microwave it.

I don't mean to be hangry (hungry + angry). It just happens. This place really is awesome, which I will appreciate more tomorrow. But let's explain how we got to this point.

After a long day of platelets and red blood cells Friday at the Alberta Children's Hospital in Calgary (an oil change for his wonky, leukemia-filled blood), Dom woke up fantastically, my parents showing up at his bedside to whisk us away to the airport.

Trish's mom met us there and they all saw us out. Bob, the security guy at U.S. customs, told us to use the Nexus line for passports once he saw our matching white Children's Wish shirts.

"If they give you any trouble, tell 'em Bob sent you," he said.

I am never taking this thing off.

The staff at WestJet found a way to get us into their version of first class, known as Plus. More legroom, free food, just fantastic. They have a reputation for going all out for special circumstances and Dom was no exception. 

He has always done well on airplanes. He wasn't horrible on this five-hour flight, but it wasn't all sunshine and rainbows either. When Trish is around all he wants is to cuddle with her. And when the seatbelt sign came on, boy was he not impressed to be stuck in a seat on his own, no cuddles allowed.

In Orlando, a representative from the magical Give Kids the World resort met us and got us to our rental van. Yes, van. Dom requires so much medical stuff it just made more sense. His current oxygen concentrator required seven three-kilogram batteries just to make it through the flight, for example. We can thank the trip to Vancouver in January for teaching us that lesson.

Things are so much worse than they were in January though. Back then he was on a handful of medications. Today, we have a literal bucket of more than a dozen, including two chemotherapies. All to keep him alive a bit longer.

We were already hungry but the resort had pre-warned us not to eat, that they would have something waiting for us. All the food here is free and there's even a couple restaurants on site that deliver. Perfect. But when we got here, thunderstorms apparently changed all that. They lock down their delivery drivers for safety's sake, and wouldn't even let us come and get something.

So she drove down the road to get McDonalds instead.

We also got set up with a night nurse, contracted in from an outside company. More on this later, but so far both sides are, shall we say, learning this bizarre situation. Here we are in this amazing villa, but the nurse is also just sitting on the couch, 8 p.m. to 8 a.m. At Rotary Flames House we had full-time nurses, but also our privacy. Here? Well, it's a bit weird. I suppose if we make the most of our days we will love having the help.

 I'm hungry, but also thankful. We had a couple moments today where we just looked at each other and said "I can't believe we made it here." We've been saying that every day for months now, given that he was supposed to die in January. But all the work it took to get us to Orlando today — from doctors, nurses, the Children's Wish Foundation, and Dom himself — makes this trip a true miracle.

Tomorrow: A trip to a new hospital and getting familiar with Give Kids the World.

Fly

I'd be remiss not to open this post by saying thanks to everyone. Regardless of what's to come your kind words and expressions of love are truly meaningful to us, and, I think, to others who see them.

We chose to be very public about everything from the beginning. Writing would be cathartic, I thought, and maybe be a way to show other parents going through similar situations what it might be like. Friends and family could catch up on what was new and how Dom was doing.

What we never expected was to be in touch with so many people who we'd never met. Cancer parents, sure. But random people who found our blog, friends of friends, even the odd high-profile public figure? Not a chance.

But it turns out Dominic has too big a smile to be contained.

The numbers remain grim. The blasts of cancerous cells in his blood, which were as high as 13 before they miraculously went back down again a few weeks ago, are back. They'd gone down to as low as three, but today they are at 16.4. Doctors call this blasting out, and is a typical end-of-life situation.

How much time that gives Dominic, we don't know. And yes, there's always the hope of another miracle. I'd rather be realistic and hope for a trip.

A wish trip. He doesn't wish for more than thumbs up and smiles from everyone he meets. He has no clue who Mickey Mouse is nor does he care if he gets to skip the lines at It's a Small World. Heck, a trip outside the hospital would be better than what he's dealt with most of the past two years.

But that's been his normal. What those of us weary of the world have a hard time grasping is that our hell — chemotherapy, isolation, fed through a tube, oxygen up your nose — is his day-to-day. He was 11 months old when he was diagnosed. Sept. 12, 2013.

So when the respiratory team told Trish today that Dom is cleared to fly to Orlando for seven days at Give Kids the World resort, all he cared about was that mom didn't have the soother he wanted. The green one with blue trim.

Other doctors have noted that for most kids, this trip would be out of the question. Too dangerous, too complicated. He'll need platelet transfusions every day. He might not actually go to Disneyworld for all we know. Maybe his condition worsens so much that we can't go much further than the hospital and back.

That's not the plan, of course, but like so many things we are ready to roll with the punches life gives us.

We fly Saturday morning, with hearts that are full but also so heavy. We know you'll be with us. You've helped get us this far. Like Dominic, you will be with us forever.

Note from mommy #2

Hi baby. 

Mommy wanted to write a quick note to you. I'm sitting in the rocking chair in your room in the dark, cause you don't want to be left alone. You have never been afraid of the dark before, but then with so many machines on, you have never really been in the dark before. It also shows that you are growing up. And it breaks my heart. Not cause you are growing up, but because it makes me think of all the things you will never get to do. 

Through everything we have always held up hope that you would break the mold and expectations and survive. I always thought you had to survive because you were meant for big things. You have a way about you where you can get people to listen to you, do what you want and fall in love with you and you can't even say any words. You were our miracle and I can't imagine how you could just be taken from us. It's not fair. I know the world is not fair, but this seems so far from being fair that it's not possible, yet here we are. 

Your latest blood work tests are bad. There is no other way to say it. There is nothing encouraging about them. The hope that we have held on to is barely visible right now. It is taking everything I have to not curl up into a ball and stay that way. But right now you are here and I need to focus on that. There will be lots of time to curl into a ball later. 

I had a thought the other day, that after you die, I will no longer be a mommy. There was a long time where I never thought I would be a mommy and to now think I may not be a mommy is devastating. Since you were born, that's all I've been and I don't think I can be anything if I'm not your mommy. You are my life and I can't survive without you. 

You have fought so hard and held on longer then any of the doctors thought you could and you have done it with a smile. You smile and laugh so much. Everyone smiles around you. Even when you are throwing a fit, I have to try to not smile. 

You are an amazing boy and loved by so many. I know many people's hearts will break when you die. There's that word, I hate that word. It is not a word that any parent should ever have to use when talking about their child. No child should ever die before their parents. Sigh. 

I am rambling and I am sorry. I just wanted to tell you that I love you. I hope with everything that you know how much you are loved.

You are my baby and you will always be my little monkey. 

Kisses and snuggles.

(Note from Sean: Trish wrote this months ago but it's equally true this week. His cancer has become worse than ever and we are holding out hope we'll be allowed to go on our wish trip Saturday. Tests happening Wednesday. Stay tuned.)

Our happy place

There's a term cancer parents use whenever their kid goes in for a checkup: Scanxiety.

It happens whether it's an invasive test or a typical X-ray. It's the not knowing whether the cancer comes back until someone tells you so. And it happens as soon as the test is booked - only to intensify when it happens and until the doctor comes with the results.

Contrast that, then, with the news we got today: Dominic's trip to Orlando through the Children's Wish Foundation has been booked for Aug. 29 to Sept. 5.

With one caveat.

More tests.

They aren't the invasive bone marrow biopsies or even lumbar punctures which he'd be put to sleep for. Those will wait until after the trip because there's always a chance putting him to sleep could result in massive problems.

No, it's just a couple respiratory tests. They won't happen until next week. But they will determine whether Dom can be on an airplane with a portable oxygen condenser.

The waiting will be difficult. If he passes, the payoff will be huge.

Give Kids the World was built 26 years ago by a Holocaust survivor who wanted other kids to have a better childhood than him - even if their lives were marred or cut short by disease.

It sits on a 79-acre property 15 minutes from Disneyworld, and is a theme park unto itself. It serves wish kids exclusively and nobody who goes there pays. There are rides, gigantic swimming areas, villas for each family and an ice cream parlour open at 7:30 a.m. daily. Yes, you can have desert for breakfast.

Dom will likely need daily visits to a nearby children's hospital for platelets. He hasn't eaten any food since basically last January when his bone marrow transplant happened, so he probably won't have the ice cream.

But, cross our fingers and toes, it looks like he's getting the trip of a lifetime, to The Happiest Place on Earth*.

*- Technically The Happiest Place on Earth is Disneyland in California. Disneyworld is apparently The Most Magical Place on Earth.

More miracles

There's no way to describe the past week other than to call it a miracle.

When I came to Calgary 10 days ago, all indications were that it was near the end for Dominic. The leukemia was spiralling out of control, his liver and spleen were enlarged and we put him on morphine.

No wish trip. No comfort. No hope.

Then he had a good day. And two good days. A trip to a show. Then the Airdrie fire department brought a truck, mascot Sparky and a photographer Thursday. He's going to be in their calendar benefiting the Leukemia and Lymphoma Society.

Friday was better than Thursday. Even though we spent eight hours in hospital for blood and platelet transfusions, he danced and played with music therapist Marc. On Saturday he slept in and played with grandparents. And on Sunday he felt so good he played air hockey with my sister and then lip-synced songs on Rock Band, the music video game.

Today we thought we'd find out about his wish trip, which if he keeps doing this well seems a sure bet. But paperwork has yet to be completed and there are a few things yet to sort out.

There's a lot that goes in to a wish trip. Fortunately we dealt with many of them when we took him to Vancouver in January. We know what he'll need if we go to Orlando.

Oxygen, for instance. His needs are higher now than eight months ago, but that just means we need to use air from the plane when at altitude, then extra batteries for the oxygen concentrator machine to get through a longer day of travel.

His platelets are much worse and he may require daily transfusions in the U.S., where specially-matched platelets won't be available due to crossing the border. They can't just look at the testing done on his blood in Canada and trust it. Their own testing would take two weeks and we'd be gone after one.

Fortunately there are two children's hospitals a half hour from Disneyworld.

As for the flight itself we figured out that Westjet has direct flights, but only on Saturdays. So barring another downturn we'll be on one of them, either this Saturday or next.

Tonight I'm driving back to Medicine Hat. My work hasn't complained a bit about my being gone this whole time and I owe it to them to work when I can.

I thought I'd be coming home to organize a funeral. Instead I'll pick up a few extra things for the trip of a lifetime.

How much longer will we have? Nobody knows. We'll roll with whatever comes.

Extra Life update

Holy cow, what a week for our Extra Life efforts. Thank you all!

The Lion King tickets were won after a total of US$2,025 raised in a 24-hour span, then promptly donated back to the hospital which gave them to a teenage girl with cancer.

Since then we've raised another $2,000, and picked up a new goal: $30,000. Kristine, Steven and their children Nolan, Gavin and Ellie have pledged to all shave their heads if we can reach that mark. 

Already 20 per cent of the way to the $20,000 goal and Trish's shaved head, we have some new prizes to announce!

- Men in Kilts (http://meninkilts.com/calgary/) has donated a $100 gift certificate for use in Calgary with any of your home care needs. They do everything from carpet cleaning to lawn care and snow removal. You'll also get two beer mugs. The winner will be drawn at random from everyone who has donated once we reach $5,000.

- Helping Families Handle Cancer (http://helpingfamilieshandlecancer.com/) has donated a pair of T-shirts - watch Facebook and Twitter for when to donate and win instantly! Dom will even sign them for you...

If you want to help us raise money for the Alberta Children's Hospital, email me at smrooney@gmail.com.

Hakuna matata

"I'm only brave when I have to be."

- Mufasa, The Lion King

There are a lot of great lessons to be found in situations like Dominic's. Sometimes it takes another source to realize them.

Thanks to a connection between my sister and Global Calgary's Leslie Horton, we wound up invited to watch the stage production of The Lion King today at the Jubilee Auditorium in Calgary.

It was the dress rehearsal leading into a three-week run for the broadway musical. Even two days ago I would've said "no chance" if you asked me if we would attend.

But Dominic has a funny way of exceeding expectations and delivering surprises. You might say it's his hakuna matata — a problem-free philosophy. No worries. He's got this.

For a week he'd sleep a day away, then barely wake up enough the next day to be pulled around in a wagon and charm folks. Monday was a typical good day, until we were touring a friend around Rotary Flames House and got to the sensory room which he wanted no part of the previous week.

Suddenly he looks at me.

"You want to play?"

Yes.

"You want to get out of the wagon?"

He hadn't even stood up, much less walked the past week. Suddenly he's walking in the sensory room, playing with a couple things. Suddenly more friends show up and he's playing air hockey (with my help).

Today, Tuesday, should've been a down day. He had to be in hospital at 9 a.m. for platelets. But he was up and alert, and when it was time to leave the doctor who came to see him was so excited by Dom's condition he asked another doctor to drop by. I've never seen him so happy. And he agreed we should re-evaluate whether a trip to Florida might be possible after all if this improvement continues.

Dominic's blood counts, so full of leukemic blasts the past two weeks, are back down. As the doctor said, that's the opposite of what he expected at this stage. He wants us to think about doing more tests to see what's going on.

We got to the Jubilee early. As the lights dimmed and the show started with Circle of Life, Dom grabbed our hands and danced in his seat. Then he got up on my knee for a better look. I don't have to tell you the show is fantastic.

By the intermission he was exhausted. We had to leave right after Hakuna Matata because he wouldn't settle down. But that's what happens when you wake him early, then bring him to a musical when he's normally down for a nap. No complaints from us.

No worries.

Hakuna matata.

Extra Life update

Thanks so much for your support of us trying to give back to the Alberta Children's Hospital through the gaming charity Extra Life. We're already up to $925! And I should mention all donations are in US dollars - don't feel bad about donating 20 per cent less than you intend because it might be more than you think once the conversion rate is applied. Every cent goes to the hospital regadless.

Great news today! For the next 24 hours anyone who donates (any amount!) will be entered into a draw for two front row balcony tickets to the Saturday 2 p.m. performance of The Lion King. This is courtesy our good friend Wilbur McLean.

If you've got something you'd like to donate to help us raise funds email me directly, smrooney@gmail.com.

The link to donate is: http://www.extra-life.org/participant/rooney

Rotary Flames House

He lies with a camera in his face. Appropriate for such a photogenic kid, and also handy. Because at Rotary Flames House, Trish and I are two doors away.

And we're not even the ones watching the monitor now.

The hospice on the same property as the Alberta Children's Hospital was built in 2009 for $12.5 million. Its title sponsors gave a combined $2.5 million. Walking through the place it's easy to see where the money went.

A gigantic kitchen, where a private chef plates lunch and dinner for families (and their guests, who are the only ones who pay). A teen room replete with gaming setups, surround sound TV, piano and comfy couches. A magical sensory room of lights, water, mirrors and sounds. The Flames Room, with air hockey, tabletop hockey, giant bean bag chairs and a store's worth of team merchandise garnishing the walls.

Then you go upstairs, where the guest rooms are. The majority of visitors here are severely handicapped, their parents leaving them in the best care while they get some respite.

And then there's us, the families in what you would call end-of-life care. We get one of the two suites, which are really three rooms in one. Dom gets a room, with nurses watching him 24/7 and responding to anything he needs. Then there's a living room, with couch, recliner, TV, fridge and microwave. Then our bedroom, a king size, sleep number bed. Giant doors between each keep noise to a minimum.

The noises of this place take some getting used to. The first night Trish had to take a clock down from the bedroom, its tick-tick-tick the only thing she could hear.

When I got here it seemed too quiet, like a tomb. But that's what happens when you've been immersed in the beeps and constant wake-ups of medical care for nearly two years.

The noises of the kids is even odd. For some, normal communication sounds like pained screaming. At first it's troubling, until you accept they're not in pain.

Dom's not been happy. He whines loudly, has slept almost the entire time he's been here and won't let anyone but Trish cuddle with him for the most part.

But he's also shown positive signs, opening his eyes, wanting to ride around in a wagon every second day and giving thumbs up when you do something he likes.

His tummy is huge, requiring bigger diapers and clothes. His face is puffy; he pulls out his oxygen prongs which are delivering more air than they used to because of the fungal infection in his lungs.

But this is the right place for us all now. Not Disneyworld, which is pretty much off the table unless he dramatically improves. Not a hospital, where he spent eight hours Saturday just to get platelets due to a troubling breakdown in communication between our primary team, the weekend staff and the lab which prepares blood products. Not home, where we'd never sleep because of how much care Dom requires.

The only question is, how long are we going to be here?

It's late

It's late and I can't sleep.

It's late and he won't live.

It's late and we can't look back.

Trish and Dom are at Flames Rotary House again, while I'm at home in Medicine Hat for the work week.

Note: again. He hasn't been there all week. At 1:30 a.m. Saturday he spiked a fever and I put on my clothes, put him in his stroller, waited for a nurse and a security guard and we walked the 500 metres over to the hospital and Unit 1.

He wasn't himself the whole time I was there. He didn't want to walk around, didn't want to play. Just cuddles and some dancing where he sat. As if he knows the end is coming, too.

More antibiotics. More transfusions. On Monday the fever returned, and on Tuesday we found out its source: A fungal infection in his lungs.

With the cancer spreading like wildfire through his blood, nothing will cure the infection now. There's no good white blood cells left. All we can do is slow it down.

So now it's a matter of time. Do we have time for a wish trip to Florida, Disneyworld and Give Kids the World? I don't know. Good people are going to try to make it happen though. They'll try their best.

I wish I had better news.

I wish I had more energy.

I wish he could at least be comfortable for this final ride.

And so we put him on morphine. The drug Trish feared the most. The one which screams death, deprivation, degradation.

And instantly it was too much, as he could barely sit up. His eyes, already puffy from the past week of medications, stayed shut most of the time.

They did finally get back out of hospital, with the rationale that if anything else goes wrong, it's just another 500 metres back there. And at Rotary Flames, there's staff watching him 24/7 so that Trish (and I, when I'm there) can get the rest we so desperately need.

But there's nothing left to do for him.

It's too late for a cure.

It's too late for regret.

But it's never too late to tell him I love him.

Extra Life

It's with this awful news that we have to move forward with something that is positive and started a long time ago. It looks like there will be no good time to announce this, but Trish is helping me up the ante for this year's Extra Life fundraising campaign.

You might remember I've participated in Extra Life, a 24-hour gaming marathon, each of the past two years. Every cent of money donated to my page goes to the Alberta Children's Hospital in Calgary, which primarily serves all of southern Alberta. The things they've done for us are incredible, and have made Dominic's journey so much easier to bear.

The first year we raised $4,300. Last year, $8,100. Combined in 2014, Team Medicine Hat raised $15,000.

I folded Team Medicine Hat into the Extra Life Alberta Children's Hospital team this year. But our sub-team is still strong. And if we meet a couple goals Trish has agreed to do a couple incredible things.

If we can raise $10,000, she'll cut at least a foot of hair off and donate it to a program such as Locks for Love.

If we get to $20,000, she'll shave her head.

Game day is Nov. 7. Please share the following link with everyone you can. Let's give back.

http://www.extra-life.org/participant/rooney