Take that, adenovirus!

When I'm in Medicine Hat there are a few ways to keep connected with Trish and Dominic back in Calgary.

We can talk on the phone, send texts, even say hi on a video chat. When we're on FaceTime he'll even kiss the phone - albeit with his forehead. You take what you can get.

There's a less interactive way of connecting, too. We found an app for our smartphones which allows us to track everything he does. From diapers to medication, food and even his blood counts, it's totally customizable. It's called Total Baby if you're interested; we actually got it when he was a newborn but it's become a bit of a lifeline in the hospital given how often nurses come around asking for information.

Importantly for me here, it syncs between phones. So the first thing I do every morning is open the app and see how his night was, whether he's taken his meds and how much he ate for breakfast.

This morning he was slated to be in clinic to get more drugs for adenovirus. Normally that means a whole bunch of new entries. But when I checked the app there were none.

I texted Trish. "Morning?"

It turns out she got a call earlier with some good news. Dominic tested negative for adenovirus for the second time in a row. That means he can stop getting extra drugs to combat it - and stop going in to the hospital for seven-hour days.

They were sleeping in.

He'll still go in for a regular weekly checkup and blood work, and still needs a feeding tube because he's not eating enough on his own, but this is the equivalent of losing the training wheels. Or, at least, greasing them up.

This week I'm working a bit extra to spell off a co-worker who went nearly two weeks without a day off. I have no problem doing it now because of how Dominic's progressing.

Fundraising note

One of the first things I did last year when Dominic was diagnosed with AML was join our friends who had chosen Extra Life to raise money for the Alberta Children's Hospital. Our team raised thousands of dollars, and I'm pretty sure we'll do it again this year.

Other friends and family are finding other ways to give back on our behalf. To no surprise, my sister Erin is leading the way. She's signed up for the Tour for Kids fundraiser which involves her cycling for three days in July; all of the funds she raises will go towards the Kids Cancer Care Foundation of Alberta. In less than a week she's met her original goal, much like I did with Extra Life. Please visit her page here to pledge your support.

If you want to do something like this please let me know so I can help you out and spread the word. There are an incredible number of events every year which support the hospital and children's cancer initiatives. The least we can do after all of the help we've received is pay it forward so that other families will get the same level of support.

Transition

6 a.m. - Wake up, take down the tube feed system, change diaper and clothes, put handful of meds in syringes and feed.

7 a.m. - Shower, brush your teeth, get dressed, eat breakfast.

7:30 a.m. - Out the door to the hospital for a seven-hour day spent mostly in a space no bigger than a queen-size bed (three-quarters of which is taken up by his crib).

Is this what cubicle life is like? The new routine doesn't feel like an improvement over the old one of being in the hospital full-time, but for the long run it's a necessary transition point.

Before this past Friday I'd never spent any time in the outpatient clinic at the Alberta Children's Hospital, largely due to the timing of my work schedule (Sunday-Wednesday) versus the most common day for Dominic to go there between sets of chemotherapy (Tuesday).

There's a myriad of differences. You sign in, there's a waiting room with plenty of things for the kids to do, but with us in at 8:15 a.m. four days a week we get in to the main part of the clinic pretty fast.

At first glance it resembles a triage - open area, easily modified for any conceivable situation, with plenty of curtains used to separate one patient from the next. There were only a handful of patients the morning I was there, but it can handle a dozen or so.

The nurses don't have time to linger at your bedside and play, even with a low patient load. He's there to be hooked up to meds for the adenovirus, so there's not much roaming around.

It's the time out of the hospital that is most important now. The guest room at Trish's parents place is starting to resemble the hospital room we had on Unit 1: the collages are back up on the walls, there are containers of medical equipment on a desk and his NG tube pump still whirrs away at night.

He loves playing in grandma and grandpa's house, with no shortage of toys, doors to open and our dog Megan to chase after. He's regaining the balance he lost through the bone marrow transplant and even seems to be more vocal - maybe words aren't far off.

The hope of taking him off the tube feeds is reliant on a healthy appetite, which remains a challenge. He'll eat meagre amounts of food at breakfast and lunch, but nothing at dinner. We know we have to remain patient and vigilant about it.

The best news of the week is that he's tested negative for adenovirus. They need a second consecutive negative test to take him off the meds for it and thus not come in to clinic two of the four days per week, so we'll find out next Friday if the workload mercifully lessens going forward.

By the same token, this week has reinforced how exhausting this journey has been. Getting out of hospital was supposed to come with less stress, better rest and more smiles. If anything it's been the opposite. There's no nurse to pop in at 4 a.m. while you sleep and change his diaper. You have to know his exact medicine schedule, which ones you need to wear gloves to prepare, which ones you need to order more of. You have to keep the environment clean. You have to prepare the meals, change his dressing and tend to his broviac line and NG tube.

As parents you do all of these things normally. Transitioning back to it after seven months in the hospital is like having a newborn all over again.

Discharge day

On my way out of the hospital this evening I passed a little girl who was walking in.

"I don't want to have to see this place," she exclaimed to her mom.

As I pushed a stroller stacked to the gills with toys, a foam mattress and more towards the parkade, I smiled. 

None of us want to see this place from the inside. But those of us who do are so glad it's here.

Today was Dominic's last as an inpatient following four rounds of chemotherapy and a bone marrow transplant. While technically momentous, in many regards it felt like just another day. I still had to drive three hours back to Medicine Hat and won't see my wife and son until next week. They still have to come back to the hospital four days a week and won't be back to their real home until at least June.

But I know we'll look back and be glad we took as many pictures as we did.

One of our favourites is of Dominic holding a stethoscope up to his chest while Dr. Tony Truong listens to his heartbeat. Tony was the one who gave us the awful news back in September that Dom had acute myeloid leukemia, and he's been our primary doctor ever since.

Though it's the entire team at the Alberta Children's Hospital that has made Dominic's journey the success it has been, Tony rightfully deserves the most credit. He's been the captain, and has been superb in telling it to us straight while being a fantastic listener and teacher at the same time.

Then there's the photo of the nurses. These are only a few of them, but you can see how happy they are for us. They have always gone the extra mile for Dominic; the bonds our family has formed with them will keep us coming back to say hi long after he's healthy.

To celebrate we brought in cupcakes, strolled the hallways and generally had a great day. He slept the afternoon away but woke up in time to leave everyone with smiles, high-fives, fist bumps and blown kisses.

More happy milestones are ahead.

It's not goodbye, it's see you soon

September 12 was a typical fall day, a bit of chill in the air but also plenty of sun.

We'll go see the doctor, we thought, get his problem figured out and be home in an hour.

An hour became a day when we were sent to the Alberta Children's Hospital. That night we found out Dominic had leukemia and a day became weeks.

Weeks became months when it turned out his type of disease was acute myeloid leukemia.

And when it turned out he had the rare 7-12 chromosome translocation (which came with a "poor prognosis"), months became, well, more months.

This hospital has become our second home. Yes, we've been back in Medicine Hat for a couple weeks but the far more common routine involves the room I'm sitting in now.

There's wallpaper trim with stenciled animals on it, a 30-year-old television, the remote control on a cord which turns it on and also can signal nurses to come at a moment's notice.

The couch doubles as a bed and would be awful if not for the thick foam mattress we got for it. The walls would be forgettable if not for our photo collages, a signed poster and the giant wall chart where we write his daily weight and blood counts.

The stack of medical pumps and monitors is a mainstay. His walker sits ever-ready under a chair near the door.

Staff are in and out constantly, whether delivering medicine, weighing his diapers in the bathroom or emptying the garbages. The nurses know us all by name and love to say hi even if they're not assigned to Dom for their shift.

It's hard to imagine this is the last night he may ever stay here.

We've been talking about it for weeks. First his liver problems cut those thoughts short. Even this week, when it seemed certain he'd be out by tonight, adenovirus showed back up in his bloodstream (even though he has no symptoms). Our first thought was "oh no, here we go again."

But no, they still want to discharge him. Saturday. And he'll get an overnight pass Friday to stay at Trish's parents place, so tonight should be it.

No coming back for another round of chemo in two weeks. No bone marrow transplant - he's done that.

It's not as though he's done with the hospital. Far from it. Four days a week he has to come to the unit's clinic, probably for six or seven hours a day to get medication and fluids until the adenovirus is gone again. But the other 17 hours a day he's free, with the typical myriad exceptions anyone with a low-functioning immune system has to follow.

Long days will turn into shorter ones. Then weekly visits. By June we hope to be back in Medicine Hat, but he'll still return for monthly check-ups.

He got his broviac line replaced after all, but only because he was put to sleep Wednesday for a bone marrow aspirate anyhow. He still has an NG tube, which will stay in for the time being as he's not quite eating enough on his own.

We fully expect that to change once he's out of the hospital. It's exciting, and a major milestone, but it hasn't hit us yet.

Saturday will be special. We'll say goodbye to this room, these hallways. But many of the nurses are already reminding us that we have to visit too. They'll miss us, and they have become understandably attached to Dominic.

Of course we'll be back to say hi. We'll miss them too. Just like this place became our second home, they've become our second family.

Progress

The isolation sign came down, the squeaky shoes went on, and it was off to the races.

The only problem is, the races aren't quite the same as they were before.

Imagine being confined to a bed for a couple weeks. You barely sit up, you feel awful and you've gained (and then lost) 30 per cent of your body mass.

Your first steps are not going to be pretty.

So it is for Dominic, who was walking around unaided prior to our latest crisis but this week is back to using his walker.

The point was driven home not by something he did, but rather a photo shared by a friend on Facebook.

Her son, who's just about the same age as Dominic and who had plenty of play dates with us before cancer happened, stands on a chair in the kitchen. Mom is right beside him, and they're doing the dishes.

He's got a full head of hair, perfect balance and enough coordination to towel off his own sippy cups.

Our son has no hair whatsoever, stumbles around like a drunk and refuses to use a sippy cup. This is called regression. It's also called daddy on a Saturday night, but that's another story.

Regression is normal if you're in the children's cancer ward. We know kids who stopped walking altogether during their bone marrow transplant recovery. Nurses say this age and potty training age are the worst for regression, so we're fighting it by getting Dom moving and doing as much as possible now that he's on the upswing.

It's still a far cry from where he was. Food is the biggest hurdle, but he's getting better every day. He chowed down on peanuts earlier this week and ate hot dog pieces one night, but yesterday all he managed was some cheezies, chips and three licks of a popsicle.

We did a baseline test before the bone marrow transplant for things like this. He put on a show, walking around and handing objects to people, communicating well with gestures and noises, though no words. We laughed at the test - of course our son is normal for his age. Except for the cancer, of course! But now it's apparent why they do the baseline.

It's looking like he might get out of the hospital in a week. He is getting better every day, but we are certain the learning curve will ramp up in a glorious way once he's out of here. It happened when he was discharged between sets of chemotherapy; this place may be safe but it's far from ideal if normal is what you're aiming for.

Detangling

Our first goal was to get out of the ICU. Then to get his weight down. Pretty soon, the barriers were falling like dominoes.

Catheter - gone.

Oxygen - stopped.

Pants - back on. There's finally few enough cords that you can single them out and detangle them once in a while.

Dominic has survived his trip to the deep end yet again. We are so incredibly proud of him.

It seems as though The Italian Drug has done its work, solving the blood clots in his liver. He'll get a few more doses of defibritide and then we'll wait and hope the problem doesn't return. His weight, which got as high as 13 kilograms, is back down below 11. His belly is a normal size again.

We're now in the process of weaning him off of many drugs, notably morphine. It's a matter of one at a time but that one in particular will be a major milestone. It means he's not in severe pain anymore.

It was a big deal when I got him to sit up last week. Pretty soon Trish had him walking again, albeit just around the room because he was still in isolation with adenovirus in his system.

Then a funny thing happened. The adenovirus didn't turn up in his last blood test. They're doing one more test but he may be able to roam the halls as soon as this afternoon.

He's no longer hooked up to medication 24 hours a day. Trish took him on a walk outside the hospital yesterday, enjoying the decidedly spring-like air. He came back and ate a hot dog - the first (arguably) real bit of food he's had in a month. Unless you count cheezies. This boy has a lot of broccoli in his future if his nutritionist has anything to say about it.

There's even talk of discharging him from the hospital in a week or so. After 42 days and counting since his bone marrow transplant, it can't come soon enough.

Even the one bit of bad news from the past week has a bright side. While in the ICU his broviac line broke. It's a line he only got a month ago, compared to the one that broke four times in the prior six months.

But they fixed the line all those other times. This time it couldn't be fixed - nothing will flow through it.

There's still another half of the line that can be used, but if something serious happened he'd need an IV just in case there was a bad reaction to a drug that was coming in through the lone broviac port.

The good news? He's probably been through the worst. There's no urgency to put in a new line because the doctors don't think it's necessary.

That light at the end of the tunnel is growing brighter.

Home*

We're not out of the woods, but we are out of the ICU.

On Tuesday it was decided that Dominic's kidney function was almost back to normal, meaning he could stop getting the dopamine which had spurred it on.

As it turns out, dopamine was the only drug he was on that could only be administered in the ICU. With it out of the picture he was free to go home. His hospital home, at least.

Nurses on Unit 1 did happy dances when they saw Dominic return. He's still hooked up to as many cords and monitors as he was in intensive care, but it's a blessing to have the familiar setting of Room 1110 - adorned with pictures and filled with his toys, clothes and all the other niceties we couldn't bring to the ICU.

His weight is still up past 12 kilograms as we wait for The Italian Drug to start breaking down the blood clots in his liver, but he's off a constant morphine drip and is slowly coming around. He still sleeps most of the day but we played with a counting and singing app on my phone when I arrived today.

I also got to kiss and hold him for the first time in nearly two weeks. Last week when he wound up in the ICU I was sick and had to wear a mask. It was a huge relief.

It's funny, if this liver issue is the worst side effect he has, we've been pretty lucky. He's technically been in remission from his leukemia ever since the first round of chemotherapy and his bone marrow transplant is a success so far. The liver problem is a result of some of the drugs and procedures he had done surrounding the transplant, but the blood switch itself couldn't be going better.

How do we know this? They do a periodic test of his blood to see what percentage of it matches his donor. If you get 95 per cent or higher donor cells that means your body isn't rejecting them yet. Dominic got 100 per cent.

Granted, some kids get 100 per cent for a while and then, without warning, reject the transplant anyhow. That's why you have to stay within a half hour of the hospital for the first 100 days. If it's going to fail, that's the most likely time for it to happen.

But things are looking up. Being back on Unit 1 is exactly what we all needed.

Edit: Some more good news, he sat up and ate a cheezie for the first time in weeks