Reality check

When the leaves were turning colour we called it pretty. When they fell around us we danced. But now they're on the ground needing to be raked, and the trees are bare.

So it is with Dominic's leukemia. After receiving the good news of remission a week ago, we've since had our joy tempered by bits of hard reality.

It turns out 90 per cent of kids achieve remission after the first round of chemotherapy, as Dom did. It's still good news but far from miraculous. A separate test known as Marginal Residue Disease turned up nothing either, which is great too.

Then we found out some additional information on exactly what kind of leukemia he has.

We've known from the start that it's Acute Myeloid Leukemia, meaning that white blood cells were developing into cancerous cells instead of the cells that help prevent disease and infection. We found out later that it's subtype M4-5, which honestly doesn't mean much to us or change much for the doctors.

This week we learned more specifics. No, this won't require a biology lesson because, frankly, it's way over my head. Apparently Dom's cancer started due to a 7/12 chromosome translocation. That may mean something if you're a doctor, but the cliff notes version is that it's extremely rare and makes the cancer more aggressive.

Aggressive. Dangerous. Deadly. Right, like normal leukemia wasn't all of those things anyhow.

What we have to remind ourselves is that our boy is still happy, his treatment is still going well and this news shouldn't change anything. He's still in the perfect place to get better, still getting scads of support. But I won't lie and say it's easy news to take.

Trish and Dom went back in to the hospital on Tuesday to begin the second round of chemotherapy. He's now hooked up to an IV for the next eight days, 24 hours a day. Plus he's got a slight runny nose which means he gets put in isolation and can't roam the halls like he used to.

Nurses were thrilled to see him. "It was like coming home almost," Trish told me. "Nurses came by to say they missed us."

Everyone's dressed up for Halloween today, including the staff. Dom? He's a dinosaur. It looks great but I can't help but think back to another child I remember who dressed as one.

My first job after leaving journalism school was in Wetaskiwin. In June 2001 I did a story on Brendan O'Callaghan, a young boy who was diagnosed with leukemia.

Brendan's family and friends were having a party to celebrate his remission. The story revolved around how he loved dinosaurs and always acted like one when nurses came to his room. It was how he coped.

Family opened up to me, some of them crying during interviews. I tried to do the story justice and am still proud of it.

That day when I visited, Brendan was dressed in green as a stegosaurus. Dominic's costume? Green. Stegosaurus. Uncanny.

Every year or two I look up the O'Callaghan's - unbeknownst to them - to see how their son is doing. They started Short Cut to the Cure, which has raised hundreds of thousands of dollars for a cancer centre in Edmonton. Judging from recent news reports Brendan appears to be in Grade 12 and is on his school's cross country team. He's doing great.

Hopefully Dom can follow in his footsteps. And this weekend we're following in the O'Callaghan's footsteps, raising money for the Alberta Children's Hospital through Extra Life, a 25-hour gaming marathon. You can visit www.extra-life.org and search for me if you're interested in sponsoring.

"This is a best case scenario"

"You held me down,

But I got up,

Already brushing off the dust."

"I went from zero,

To my own hero."

- Katy Perry, 'Roar'

Six weeks after we were first told our son had Acute Myeloid Leukemia, we awoke today to a phone call letting us know that he's officially beating it.

Or, more accurately, that he's beat it. For now.

Our primary nurse called at 9:45 a.m. to say that Dominic's bone marrow aspirate, which was taken Wednesday, showed zero per cent cancer cells.

"So can I call that remission?" I asked.

"You sure can," she replied. "This is a best case scenario."

On Wednesday night two YouTube videos were posted on my Facebook feed. Both were compilations of children's hospital staff, patients and families lip-syncing; one to Katy Perry's 'Roar' and another to Sara Bareilles' 'Brave.' Both are enough to bring on tears.

Our Dominator is worthy of both of them. And all of the happy tears that flow his way today.

His journey is not over. He will still go back to the hospital Tuesday for additional rounds of chemotherapy. We will not have the chance to talk with doctors until then about how anything changes due to this news. Hopefully it means less aggressive drugs and a plan of maintenance rather than re-killing all of the cells in his body. We don't know.

What we do know is cause enough for celebration.

After a first few weeks of pain, swelling, drugs and tests, Dom did start to return to his usual self. That's to say happy, smiling, energetic and full of love. I think all of the positive energy — more than we ever could have expected — played a role in this. We felt it, and we passed it on to him. And even the best doctor in the world will tell you that a good attitude is absolutely a part of a successful treatment.

It would be simple to think our road ahead just got easier. Perhaps it has, at least in the short term. Long-term? Well, this is all we had planned for in the long term anyhow. Hopefully our dreams and expectations continue to meet up so neatly with reality.

There are many other cancer patients in Dominic's shoes who don't go through this scenario with such luck. And we're quite aware on some level that his luck could change tomorrow. After all, that's what happened when he became sick in the first place. You just never know.

But for today, we're happy. Yesterday we were happy. Tomorrow we will be happy. Nothing has changed except for the test results.

Cancer had us all down. We've turned the tables. Roar, indeed.

Packing up

Well that was unexpected.

Really though, we should have seen it coming.

Dom's blood counts began to jump up on the weekend. Since he hasn't yet had the bone marrow biopsy necessary to decide when and how the second round of his chemotherapy will proceed, the only logical thing to do is let him out.

Out of the hospital, that is.

Yes, this afternoon Trish and Dominic's grandparents are packing up room 1111 at the Alberta Children's Hospital and moving to her parents' house in northwest Calgary for the next few days.

This is where I claim to be sad that I can't help. Truth is, I got lucky on this one. There is a lot to move out of that room. It's well organized, which Trish is amazing at, but that just hides the truth of the situation.

When you're loved as much as Dom you tend to accumulate toys. Electronic toys, stuffed toys, toys that defy description; all wonderful and appreciated but some jammed so far into the bottom of a bin their cries for attention cannot be heard.

Snacks. Clothes. Cleaned tupperware containers that once contained oodles of delicious lasagna. I suspect they'll find things they forgot they had.

Perhaps the hospital folks make people leave every once in a while just for the cleansing effect of a good purge. One nurse told me they once found a moldy fruit when cleaning a room. That's past gross; it's actually dangerous for the kid with a compromised immune system.

We could hypothetically come all the way home to Medicine Hat, but realistically Dom will get the bone marrow biopsy soon and needs bloodwork taken before he can have the biopsy. And once the biopsy results are in, he's just going right back in for a long stay with the next round of treatment anyhow. It's easier to just stay near the hospital. Maybe they'll come home the next time he's discharged.

One of our new friends told us on Facebook that the first discharge is the scariest from the parents point of view, but pretty soon you're looking forward to it. We've grown to love our team and the hospital so there is definitely an aspect of fear, but it's also a tiny pinprick of light at the end of the tunnel. There are more good days ahead.

The waiting game

(photo courtesy ShutterBEAN Photography - https://www.facebook.com/ShutterBEANPhotography)

Seven days may not sound like a long time, but when you're waiting to hear one number it is an eternity.

Ever since Dominic finished his first round of chemotherapy the biggest question has been when we can start round two. To do that, however, his neutrophil count (that's a specialized type of white blood cell) has to be higher than 750.

It was stuck at zero until the day before his birthday, when it suddenly spiked to 300. Then back to zero. Now it's stuck at 100.

Every morning at 4 a.m. a nurse comes in, accesses his main line and takes blood. We find out the counts a few hours later.

Hemoglobin, fantastic. That's the stuff that carries oxygen around, and explains why Dom has been bouncing off the walls this past week. He's loud, proud and strolling around the whole unit in his walker. Nurses be warned.

Platelets, even better. He hasn't had any big bumps since the one that knocked his tooth back up, but if he did there's plenty of blood clotting help at the ready.

White blood cells? Well, they're good but have stalled along with the neutrophils. That makes sense because they're both the same stuff; neutrophils are just a specialized count among the white cells.

But those darn neutrophils. I talked to one dad whose daughter has AML and he admitted you have to be patient. She went weeks without seeing a rise, but it always does come.

Why don't they just send us home? Because the cells we're waiting on are the ones that fight infection. While Dom can easily go out on a four-hour pass to grandma and grandpa's house, we have to be extra vigilant that he doesn't catch a cold. So no public places and lots of handwashing and sanitizing.

We used one of those four-hour passes so that Sandra, whose business is ShutterBEAN Photography, could take photos of us all. Most of the photos of Dom are taken by me, and rarely are all three of us on the other side of the lens so this was a wonderful gift. You'll see the photos pop up on here periodically - we can't thank Sandra enough for doing it.

There's been other good news, including the fact we are now meeting with other families from Medicine Hat who are going through journeys similar to ours. Kallum, with parents Tyler and Rachelle, is next door for the week as the adorable little 3-year-old winds up his treatment. We've already learned a lot from them. You can follow their story at http://kallumsjourney.blogspot.ca/. Another family, the Gregory's, are here next week. The Medicine Hat News did a story on them too (http://medicinehatnews.com/news/local-news/2013/09/disney-world-wish-coming-true-for-hat-youngster/).

Other good news is on the financial front. The Canadian government has a new type of employment insurance specifically for parents of critically ill children which just came into effect a few months ago. Trish has been accepted which effectively means the benefits she was getting on maternity leave will continue for another six months. If you're in a situation like ours this is an absolute life saver.

We had another up-and-down day today. It started with Dom's weight going down and talk of an IV because he wasn't eating enough. It's finished up (for me at least; I have to drive back to Medicine Hat now) with almost two straight hours of him cruising the hallways and making new friends.

You can probably guess which memory I'll take with me back home this week.

Extra Life fundraiser

While we wait for Dominic's blood counts to rise so he can start the second round of chemotherapy treatment for his leukemia, I want to take a bit of time to promote something my friends back in Medicine Hat are doing.
Extra Life is an event which raises funds for children's hospitals across North America. Started in 2008, it starts on Saturday, Nov. 2 with participants playing games (mainly video games but also board and other games) for 25 hours. They seek out sponsors and the money collected goes to a children's hospital of their choice.
Given that Dom is in the Alberta Children's Hospital, that's where our focus is.
Krista Gomke, one of our good friends who we met through our local slow pitch team, is getting a bunch of folks from the team together to participate. To sponsor any of us visit http://www.extra-life.org/index.cfm?fuseaction=donorDrive.team&teamID=12444.
I'm on the team and the plan is for half of the gaming party to take place at my place and half at Krista's.
This isn't the only fundraiser that is taking place. My friend Trevor Prosser is keeping track of the ones we have endorsed at www.donationsfordominic.com.
I would like to publicly thank the American Legion baseball teams in town, as they raised a reported $2,500 for us on Saturday at their games. Normally I don't mention amounts but they sent it to local media in a press release, so it's public knowledge.
I hope everyone understands it's the gesture of doing something, not the amount that means the most to us. Everyone's support has been more than we ever imagined. Even just for following the blog, thank you.

Happy birthday part two

http://www.youtube.com/watch?v=EgPUULap2PY

And that was just part of it.

Dominic's first birthday was a whirlwind of joy, cake and love. And then some more cake.

His blood counts continued to rise with the odd switch of his neutrophils (a type of white blood cell) back to zero. After they jolted up to 300 a day earlier we were told to expect a potential discharge from the hospital if they rose again. So this was a blessing in disguise as we got to avoid the stress of moving out.

We were going to be back Tuesday anyhow. This is much easier.

Dom got serenaded by his nurses with Happy Birthday, then again at grandma's house by friends and family. He topped it off with a "smash cake;" a small cake meant for him to make a giant mess of. I've tried to edit in the high points in the above YouTube video.

Needless to say once we got back to the hospital it was quick to sleep.

I'm here for an extra night this week because my paper doesn't publish on Thanksgiving Monday. There is a lot to be thankful for this weekend.

Happy birthday

Happy birthday. You say it so many times that it tends to lose some of its meaning.

Today is truly the happiest birthday we could imagine.

Does that not make sense? It shouldn't. Our son has cancer and the statistics say he's got a 30 or 40 per cent chance of dying from it. But screw cancer. We're beating it.

Dominic shows us how every day. He wakes up, he smiles. He eats, he smiles. He moves his walker through the hallways. And smiles.

This morning we woke up to the news that his blood counts are better than expected. For the first time since we got here he actually has neutrophils - a type of white blood cell which fights infections.

All of his numbers rose. So we were hopeful to get confirmation on a day pass for his birthday on the 12th.

The team of doctors took our hopes even higher.

They said we might get discharged on his birthday and leave the hospital for Thanksgiving weekend instead.

We had never dreamed of it. And in some ways we'd actually prefer to stay, as we wouldn't go to our real home in Medicine Hat but instead grandma's place in Calgary. We'll be really thrilled when the discharge happens at the end of treatment in six months or so.

So here we are, about to celebrate his birthday and possibly pack up this room. Even if we do he's got an MRI and bone marrow biopsy on Tuesday and could start the next round of chemotherapy right away.

But knowing his body is starting to make the blood cells that he needs again is an important milestone. It screams progress. And it's another reason to smile.

There were other reasons to smile today too. Dom played with his buddy Kai. We were given special tickets to the Stampeders game (thanks to the Alberta Children's Hospital) and went with Kai's mom while family pitched in with babysitting. 

Dom got a few early presents including a Stamps jersey signed by members of the team.

Who knows what tomorrow will bring. It'll sure be hard to top today.

Random acts of kindness

So much love. So much strength. So much more than we ever imagined.

And it seems there's so much more to come.

Isn't leukemia supposed to be a horror story? Thus far ours has been more of a romance, minus the Fabio.

This week has presented the usual challenges and triumphs for Dominic. It started with a bout of mucositits (mouth sores) which meant he didn't sleep well and had to get mucous sucked out of him. But that seems to be under control now and he never stopped getting out and about with his walker and toy car.

Wednesday was an exciting one as Dom met another little boy, Kai. Kai is two months younger than Dom and they have similar (bald, chubby, cute) looks. They hung out in the playroom and at one point Dom was essentially pushing the walker as Kai stood in it.

And then it happened.

Dom got excited and started bouncing up and down with his hands on the walker. Face, meet walker. New tooth? Back where you came from! Blood? Like a horror film.

Grandma gave him a popsicle and all is well now, but it was quite the scare at the time. It was a good thing his platelet levels were decent so the wound clotted up on its own.

Today his white blood cell count is up so there's optimism we might be able to start the second round of chemotherapy next week. And we're pushing hard to get a day pass for his birthday on Saturday.

My week at work was filled with unexpected surprises. A card signed by everyone at the Medicine Hat News where I work and gifts for Dominic. Another card and donation from Trish's work, Ensminger, Beck and Thompson Chartered Accountants.

Monday night I got a random email. "Being a mom, I was extremely touched and saddened by Dominic's story... My friend and I wanted to do something for your family to help relieve at least some of the stress you must be going through."

Meet Carly Desjarlais and Krista Wilde. We haven't! But they're already our new best friends. These two ladies are organizing a steak and silent auction fundraiser Nov. 14 at Ralph's Texas Bar and Steak House in Medicine Hat with proceeds going to our family.

If you want to get in touch with them Twitter (@kristawilde and @CarlyD85) is the best place but all fundraisers relating to Dom are being tracked by our good friend Trevor via the website donationsfordominic.com. We're still looking for sponsors for the Extra Life fundraising team that our friend Krista is running as well.

Every day I heard about something new. Medicine Hat's American Legion baseball teams are collecting donations at their games Saturday (starting at 10 a.m. at Jefferies Park). I'm meeting with other groups next week who want to do fundraisers. Every time I go to cover an assignment people are coming up to me with support and asking how Dominic is doing. It's incredible.

Trish and I chatted over the phone last night as I drove in to Calgary after work. We just can't believe everything that's happening. It's more than we think we need and we've already started to think about the bigger picture and how we might be able to pay it forward some day.

But the truth is we don't know when some day will happen. So for now, it's all about Dominic.

Watching the CBC

Time is either flying or standing still this week for Dominic.
With his first birthday coming up on Saturday, it’s hard to believe that 365 days since Oct. 12, 2012 will have gone by.
His birthday will mark exactly a month since we went to the emergency room at the Alberta Children’s Hospital in Calgary. That seems like just yesterday too.
With the news we received today, it’s hard to know when or if his life will return to a sense of normalcy.
We’re told that due to his blood counts, there’s almost no chance he’ll be released from the hospital before the second round of chemotherapy begins to tackle his leukemia.
Yes, it’s time for another biology lesson.
The Complete Blood Count measures the types of cells your bone marrow is producing. White blood cells fight infections, hemoglobin (found in red blood cells) carries oxygen throughout your body and platelets help stop bleeding by forming clots. We’re also interested in a specific type of white blood cell called neutrophils which are the primary defence against infections.
Since chemotherapy drugs kill off just about everything, Dom’s levels have been remarkably low. His white blood cell count has been as high as 3.4 (million per cubic millimeter) and as low as zero, but a normal person’s level would be closer to seven. Neutrophils have been zero (they’re usually half the white cell count). Hemoglobin has ranged from 80 to 90 or so (compared to a healthy three-digit number). And platelets have dipped as low as 11 (they ought to be eight times that).
Whenever hemoglobin or platelet counts dip too low, he gets a blood transfusion. So if you gave blood recently, thank you and if you want to do something to help kids with cancer, that’s a good start.
Today was a bad day, as he needed both types of transfusions. We’re in a holding cycle until his body can start producing the cells on its own. Once the numbers get high enough, we can start the next round of treatment.
We could be here a while.
In some sense it’s good news. Unpacking the hospital room is a lot of work and setting him up at Trish’s parents house in Calgary or ours in Medicine Hat would bring about a whole new set of stressors. If we want the best care we’re already in the right place.
But the sense of foreboding it brings with it is tough to ignore. Remember the six-month timeline? That was presuming no delays.
Fortunately Dom is otherwise doing well. He got out of the hospital last week for a couple trips and is generally happy and closing in on walking. He loves the music therapy at the hospital and was banging on drums this morning.
He continues to get more and more attention and love, which we feel blessed by every day. My employer, the Medicine Hat News, has a story on him (http://medicinehatnews.com/news/local-news/2013/10/living-a-parents-nightmare). My best friend Trevor created donationsfordominic.com. Krista from our slow pitch team is organizing a fundraiser where a bunch of us will play games for 25 hours — you can join our team or sponsor us for the cause (the Alberta Children’s Hospital) at http://www.extra-life.org/index.cfm?fuseaction=donorDrive.team&teamID=12444.
Upon reading the News story one person approached me while I was working yesterday. She handed me $50 and said it was for gas money. I gave the stock “thanks so much” answer. It never feels like enough but I don’t know how else to respond. It’s all so overwhelming at the end of the day though.
Tomorrow’s another day. We push ahead.

Parental guidance

It stands to reason that mom and dad remain among the most important people in the life of a child who has cancer.

But what's it like being a parent in a place far away from home for months at a time? We're starting to find that out.

Because none of these kids have particularly strong immune systems, isolation is common in the halls surrounding the central nurses station here at the oncology ward of the Alberta Children's Hospital. For the first few days we joked that Dom would forever hate anyone dressed in a yellow hazmat suit because that's pretty close to what nurses and doctors had to wear when they saw him.

That did ease up as he started to respond well to chemotherapy, and now we get to take him out of the room to enjoy things like music therapy in a special playroom. But at the start we rarely ventured out ourselves.

The one place we did go was the kitchen, where a microwave, toaster, sink and a couple communal fridges proved to be a meeting place for some extraordinary people.

I met one man - let's call him Joe - early on as I was washing dishes and labeling items to go in the fridge. His child also has AML but is older. They'd been here for a month already and knew the routines.

"We've had some dark days," he admitted. I'd say more but wish to respect his privacy. What I will say is that he's always here, always doing what he can to help his child. I can tell what he's endured from a more mature child who knows what's going on is far more challenging than what we've experienced with an 11-month-old.

The other day he asked Trish if she needed anything from the mall. It wasn't in passing either - he literally came to our room to ask.

There's a single mom who showed me to swipe a urine specimen container and fill it with dishwashing liquid so I could do the dishes in my own room. There was the dad who introduced himself and needed desperately to talk, because he'd just been told his child's cancer has spread. There were the parents who helped out at pizza night - it's clear they've had a child in the ward but I'm scared to ask what the result of their treatment was.

The parents here all have a special bond. We're all going through variations of the same thing. Even though we rarely see each other there's an unspoken understanding. So when we talk about the vagaries of the fridge (it's too full, thank goodness someone cleaned it out), there's an undertone that's unmistakable. Do I ask you about your kid? Do I really want to know how bad it is? Or do I take the chance and hope there's something positive we can share?

Some of us have blind hope. Others look away and you can tell they're sliding. Then there's the newcomers like us, almost in a daze as they try to adjust to new surroundings.

I'm so lucky I met Joe that one night in the kitchen. I told him my story, he told me his. It helped me get out of the daze.

Dominic

As for Dom, the fact I just wrote that much without an update on him says all you need to know. He's started eating food again like he did before this all started. He had his last lumbar puncture of this first round of treatment and has shown few, if any negative side effects of the chemo.

Yesterday he spent four hours at his grandparents' house. Today he got in a walker and toured the hallways for a good 20 minutes. He had a bath, got his main line patched up and a nurse who hadn't cared for him in two weeks couldn't believe he was the same boy. He looks that much better.

This is only the first of four rounds however. In connecting with other parents - including a few in Medicine Hat - who have been through it, it seems as though each round can be a completely new scenario in terms of side effects and how things progress. You have to expect a roller coaster ride or else you're going to get jolted at some point along the way.

Tubes

It’s always a matter of good news and bad news, and being the one not there for it four days a week either makes it excruciatingly worse or marginally easier. It depends on what time of day you ask me.
First there’s the good news. Dom did well enough that he was let out on a day pass, which meant a trip to grandma’s house 15 minutes away. He played with toys old and new, but wasn’t allowed to get any kisses from our dog, Megan. Doctors were also worried about Megan jumping up on him but clearly they do not know our 11-year-old cocker spaniel. She only cares about the boy when he’s accidentally dropping food on the floor.
Doctors would prefer less food be dropped or otherwise left uneaten, but there’s only so much you can do about a boy whose appetite isn’t the same as what it was a month ago. Remember when Dom bloated up to 11 kilograms during the first few days at the hospital? That was bad. Now he’s under 10 and dropping. Given that the cancer cells are presumably killed off by the chemo, that’s bad news too. Nobody goes up to an 11-month-old and asks how much weight they’ve dropped lately.
If the weight keeps falling he’ll get another tube down his throat so they can force-feed him. The last one they had in fell victim to Dom’s mighty left hand, which yanked it out.
And really, the weight issue isn’t a big one yet. It’s easily solved, even though we’d prefer to just get him eating more.
A more serious probelm happened today, when Trish noticed Dom’s main (broviac) line had cracked. If that happens out of the hospital they tell you to clamp, cover and call. Clamp the line to prevent blood coming out of it, cover the damaged section and call the hospital to let them know you’re coming in to get it fixed immediately.
Fortunately our incident happened in the hospital, but it was no less traumatic. His line had been getting twisted around more than usual this week anyhow, so in retrospect it wasn’t a huge surprise, and it was easily fixed according to Trish. I’ll get to see for myself when I return Thursday.
If all of that wasn’t enough, Wednesday became moving day when it was decided Dom’s original room was needed for an incoming patient. Apparently it has a special ventilation system which he no longer needs. He just moved one door down the hall anyhow, though try telling Trish that was no big deal. We’ve accumulated a lot of stuff in that room in three short weeks, from clothes to pictures hanging on the wall to toys and stuffed animals stuffed in drawers and closets.
Maybe the new room doesn’t have its own ventilation, but as long as it has that great view out to the west I won't complain. 

Support update
I walked in to work today to a card and cheque from the Jim Pattison Broadcast Group. Basically that’s other media folks in town. Never would I have expected something like that — especially given the average pay scale of anybody who works in the media! That’s always an easy joke.
They’re not the only ones who have shown us amazing support, as friends from my own work and many other people have stepped up with kind words and gestures that are comforting. Some folks you can tell have a longer story about why they want to do something kind. You can see the look in their eye or read it in the words they’ve written. We are so lucky to receive so much.
We have started to try and pay it forward, even as we know there is much ahead for us. There’s a single mom here who we met and decided to give a gift card to. Hopefully her 10-month-old can go home soon, but in the meantime we can’t imagine going through this without as much support as we’ve had. Even having each other is a major boost. Maybe we’ll get to know her more and give some emotional support too.