Home, Jon Friel understands more clearly than ever, is not the house he owns on an acre of land just outside Port Perry; it hasn’t been since November.

Nor is it the two-bedroom apartment at Ronald McDonald House where his wife beds down each night after kissing him goodnight.

Home now, as it has been for months, is 200 square feet or so on the eighth floor of Sick Kids Hospital in the hematology/oncology unit. In this room, the 35-year-old eats his meals, usually with plastic cutlery from a cardboard takeout box, welcomes visitors and gets a fitful sleep on a hard vinyl mattress.

This is where Jon now lives. His heart is here because his ailing daughter, Harper, is here also. He rarely leaves.

Harper, 4, was diagnosed with brain cancer in November. She had a tumour the size of a golf ball removed during six hours of emergency surgery the day after she arrived at the hospital. She has undergone five rounds of chemotherapy. A sixth was cancelled out of fear it might kill her.

Harper’s stomach was so damaged by the medicine that she is on a feeding tube that threads into her nose, past her throat and through her stomach, pumping formula directly to her intestines. She is weak but improving; doctors still can’t get as much nutrition into her body as they’d like. She won’t be able to leave the hospital until they can.

“You feel very powerless,” says Jon.

So Father’s Day will be like every other day. Jon will spend it here, in a space smaller than most hotel rooms, with Harper, her two younger sisters and his wife, Sonja; a family together, sharing space with medical monitors and a procession of attentive nurses.

The Whitby firefighter will wake up about 7 a.m., shower and then slip downstairs to the food court to pick up breakfast. Then, sometime after 9, Sonja, also strong-willed and resolute, will bring their two other daughters, 2-year-old Elle and baby Charlotte, over from Ronald McDonald House, which is a home away from home for seriously ill children and their families.

Harper has been in the hospital so long that not only have she and Elle had birthday parties here but the family has also celebrated an actual birth day. Charlotte was born on Dec. 14, the day before Harper began her first round of chemotherapy. Just six hours after Charlotte arrived, 32-year-old Sonja returned to Harper’s room, babe in arms. She navigated the tunnel under University Ave. from Mt. Sinai Hospital’s labour and delivery unit, back to Sick Kids.

In Harper’s room Sunday, they’ll spend the day like any family with young children might. They’ll paint pictures, make bubbles, play with toys, read books, watch videos; with fun things tucked in every corner and on shelves, the room has the feel of a cramped daycare. There’ll be tears, but there’ll also be some laughs. After all, they have each other.

“We’re trying to find all the positives we can and as crappy as the situation is, we got to spend seven months together. We don’t get to sleep together as a family but we still get to spend every day together. Not every family gets to do that,” says Sonja.

As much as this story is about the Friel family, Jon also understands more clearly how wide-ranging the definition of family can be.

He always knew his fellow firefighters, his work brothers and sisters, had each other’s backs. They pride themselves on it. It’s how it has to be in a profession in which danger can be encountered at a moment’s notice. And how could you not grow close when you spend 24-hour shifts together? But that brotherhood/sisterhood came through for the Friels in a way Jon finds overwhelming.

There were, first, the small things that were actually big things. Within hours of learning Harper had surgery, Jon’s crew at Whitby Fire Department headquarters had chipped in hundreds of dollars to buy the girl an iPad in a pink case, colouring books, stuffed animals and other toys.

That iPad is rarely out of Harper’s hands now.

That was just the beginning of hugely helpful gestures. A gang of almost 20 firefighters showed up with rakes and leaf blowers one day at the Friels’ Port Perry house to do the fall yard work. In short order, there were 53 bags of leaves ready for pickup at the end of the drive.

A fire station near Sick Kids is letting Jon park there free, coming and going as he needs. Another firefighter from Jon’s station, Misha Maric, set up a blood drive in Harper’s name. Sixty-four people came to donate — 34 of them first-time donors — on the first day and other departments across the province have picked up the cause.

Then came the big thing. It didn’t take long for Jon to exhaust the sick days he’d banked during 12 years in the service so the other firefighters stepped up to take Jon’s shifts on a volunteer basis. That way Jon could remain with his family without a loss of income. Whitby fire Chief Dave Speed signed off on it; the only catch was that there could be no expectation Friel would ever pay anyone back.

There were 19 shifts to be filled. They were gone within an hour. Some firefighters were disappointed they missed out. That generosity was enough to keep Jon away from the fire hall until early July. The program was just extended through September, another 15 volunteer shifts approved.

They’ll go, says Whitby Professional Fire Fighters Association president Todd Gilchrist, to the “first people that are on email or on their phone when they get a text from the shift steward. It’s that fast.”

Jeff Dinsmore, Friel’s platoon chief, has been a firefighter in Whitby for 32 years. He recalls co-workers taking the shifts of injured firefighters but he can’t remember it happening previously because of an ill family member. Still, he doesn’t see it as extraordinary.

“That’s what we do,” he says. “There’s no hesitation. There’s no worrying about payback. Somebody is in need so you have to help out. It’s done.”

That help was needed when the Friels’ happy life was rocked last fall.

Just before Halloween, Harper became sick. After visiting a pumpkin patch, she vomited in the car when the family stopped to do some shopping.

“From there, she just kind of got sicker and sicker,” says Jon. “She started waking up, not being able to walk, dizzy. She would throw up every morning but then she’d have a period during the day when she felt better. Then she’d regress.”

Doctors said it was the flu, but Jon wasn’t sure. Harper wasn’t getting better. She was often listless on the couch and no one else in the family took ill. Then Harper’s head started to tilt a little. Something was definitely wrong.

Jon arrived for his shift at the fire station on Nov. 13, a Monday, and expressed his concerns to the other firefighters in his crew. Some, fathers themselves, encouraged him to go to Sick Kids. Jon took Harper to the hospital at shift’s end on Tuesday. After a few hours, and an MRI, doctors determined she had a brain tumour. Twenty-four hours after he arrived at the hospital, surgeons were removing a medulloblastoma — the most common pediatric brain cancer — from the lower back part of her head. It took the doctors three hours to get at the tumour, then three hours to remove it.

Then came the chemo — three low-dose and two high-dose cycles — that ravaged Harper’s body.

“During the first round (of high dose), Harper basically laid in bed for 10 days, grinding her teeth and throwing up,” says Jon. “She didn’t play with her iPad, she didn’t watch TV, she just lay in bed sleeping or screaming.”

The fragility of her health means the family has, essentially, been at the hospital ever since, at least one parent always at Harper’s side.

“She doesn’t know that she has brain cancer,” Jon says. “She knows she’s sick and doesn’t feel well. She talks about not having hair once in a while and that her hair is going to grow back. She doesn’t really know she’s in a life-or-death situation.”

Harper’s days have been an endless cycle of tests, stem cell transplants, platelet transfusions (every other day) and pain medications, her frail body getting much of what it needs though a tube into her jugular vein. She’s been treated by medical teams from neurosurgery, intensive care, neuro-oncology, bone marrow transplant, pain medicine and gastroenterology. Three weeks ago, she was almost transferred to the intensive care unit, she was in such rough shape.

“They did a scope of her stomach (in late May) trying to figure out why she was in so much pain and the top two-thirds of her stomach is basically raw,” explains Jon. “Her duodenum, which is the first part of the intestine, has no villi, which is like little fingers in intestines that gather up the nutrients. We need to wait for that to grow back.”

Breaks from intense medical scrutiny have been rare for Harper. There was a four-day respite at Christmas, when the family returned to their Port Perry home. Sonja’s best friend Melissa Kolumbus and her husband, Ryan, had decorated the place, complete with a Christmas tree and garland on the banister, so the kids could experience some holiday magic.

At least a couple times a week, Kolumbus, who is pregnant, drives into Toronto, often bringing groceries, to do the Friels’ laundry until 1 a.m. before returning home to Port Perry to her own three children. She also spent the wee hours of a December morning with Harper so Jon could attend Charlotte’s birth.

The family also gets help from Sonja’s brother, Justin Deneault, and his girlfriend. They live in an apartment attached to the Port Perry house and look after the Friels’ two golden retrievers and odd jobs around the house. Another couple in town, who have a landscaping business, maintain the lawn.

“It takes a village and we have a village behind us,” Jon says of the help from medical personnel, firefighters and friends.

“We talk often about how we’ll never be able to repay what people have done for us. How many times can we say, ‘Thank you, thank you, thank you?’ What can we ever do for all these people? If they ever need help, they can count on us for sure.”

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The Friels were supposed to get home on another occasion, between chemo rounds, for a week. That got cut to two days when it was realized Harper had been exposed to chickenpox. An Easter escape that allowed the family to be together at Ronald McDonald House just before a round of high-dose chemo was also truncated. The family returned to the hospital through the emergency department when Harper had a blockage in her bowel.

Since April 1, the family has lived in this eighth-floor room with Jon sleeping on the daybed and Sonja — on maternity leave from her job as a primary schoolteacher — leaving each night to return to Ronald McDonald House.

Their life unfolds in a whirl of activity around the hospital bed where Harper spends most of her time. Elle, a precocious 2-year-old, seemingly knows everyone in the hospital. The nurses in oncology gave Elle her own stethoscope and she does pretend medical rounds with the staff. And, like a kid with a lemonade stand, Elle will sometimes set up a stethoscope cleaning business in the hall outside Harper’s room. It’s 25 cents for the works.

Charlotte, a remarkably calm and happy baby, often sleeps in a car seat at her mom’s side. Sometimes the bathroom is used as a quiet nursery so she can nap undisturbed.

“This is our bedroom, living room, nursery, bathroom, kitchen, all in one,” Jon says of the room.

“Our mansion,” adds Sonja.

“(Elle and Charlotte) don’t really give us much opportunity to get depressed about anything. We have to stay positive. We have two other kids to look after,” adds Jon, wiping away a tear as the words catch in his throat.

“We have our ups and downs but we just don’t have the opportunity (to feel sorry for ourselves). We have to look after Harper and each other.”

Harper loves to spend time on the iPad given to her by the fire department. She can’t eat so she watches videos of the food she craves, blueberries and strawberries along with hamburgers and hotdogs even though she’s never had a hamburger or hotdog. That screen also becomes a shield, something to hide behind when she is apprehensive a stranger might be another doctor, there to give her a needle or perform a test.

On the television mounted high on the wall just beyond the foot of her bed, her favourite movies play constantly whether it be Beauty and the Beast, Ferdinand or The Lion King.

“I’d rather it be all of us here together stuck in this little room than only one of us here with Harper taking turns,” says Sonja. “I’d take that any day over being separated. It’s hard sometimes but it’s fun other times.”

Sometimes, Jon will take Elle for a walk. She likes running on the grass at Queen’s Park. Or they might leave for a few hours to go somewhere like the zoo. Sometimes they’ll go to the Eaton Centre, where Jon will catch himself watching how normal other people’s lives seem.

After dinner, either Jon or Sonja will bathe the younger girls, put them in their PJs and load them into a stroller for Sonja’s walk back to Ronald McDonald House. Jon then goes to the room’s window overlooking the hospital atrium. He’ll watch as Sonja and the kids make their way to the glass elevators, waving goodbye as they begin their descent.

That begins Jon’s alone time with Harper. He sits in a chair beside her bed and they’ll chat quietly or watch videos or play a game on the iPad together. He’ll rest his arm on the rail of the bed and often Harper will lay her head on it until she drifts off to sleep.

When Harper is sleeping, Jon and Sonja will sometimes order a movie or find a TV show to enjoy together even though they are hundreds of metres apart. Sonja watches it on an Apple television at Ronald McDonald House, Jon on his own iPad in the hospital. They’ll text comments back and forth. This, for now, is date night.

“We’ve kept our relationship pretty good through all of this,” says Jon. “We told each other at the start that we weren’t going to let this ruin us.

“Sure we’re stressed but … we just have a different perspective on life and what is worth getting upset about now.”

As it gets later, Jon curls up on the mattress, always facing Harper in her bed. That way he can jump up quicker to tend to his daughter should she throw up. He was up three times on one recent night. Harper almost always sleeps facing her dad.

Jon does the overnights. With Charlotte still nursing, it would be almost impossible for Sonja to tend to Harper if she was ill while looking after an infant at the same time. The nurses, “like ninjas,” Jon says, are in and out of Harper’s room through the night. They check her vital signs every four hours and verify the flow of nutrients every hour. If Harper does wake up, she’ll be grumpy, which often means screaming and flailing. She’ll want dad to sit beside her and hold her hand.

“One thing I’ll say for Jon (is) ever since this happened, I think every day is Father’s Day,” says Sheldon Lamoureux, a firefighter on Jon’s crew whose friendship with him dates to before they joined the service a year apart.

“I know the type of father he was before and I know the type of father he’s going to be for years to come for those three beautiful girls and what he and his family have had to go through. He’s going to hug them tighter every single day for the rest of their lives.”

While Jon and Sonja learned from experience not to become overly hopeful, there is a chance Harper will soon be discharged if her nutrition issue can be solved. The family might even be able to skip an interim stay at Ronald McDonald House and return directly to Port Perry.

There’s no guarantee the cancer won’t return.

“After the first two years, chances go up but we’ll always be kind of walking on egg shells every time we go for an MRI, anytime she looks sick or throws up or has a flu — all the things that led us here,” says Jon, the tears welling again.

Harper will also require speech therapy and physical therapy and she’ll have some permanent hearing loss. She’ll also have a followup chemo program.

Still, if they could get to their house, make meals together and let everyone sleep in their own beds, it would be a huge lift for the Friels.

A step toward that came just over a week ago when Harper was allowed to go outside the hospital for the first time in months. Going out finally meant something other than a stroller ride through hospital corridors.

Harper’s spirits soared. She laughed. She smelled the flowers planted around the hospital. With support from her parents, she walked on the patch of grass alongside University Ave. She lifted her shoulders up and down and asked her parents to watch her jumping even though her feet never left the ground.

“You got a glimpse that she’s not going to be that sad kid in a bed forever,” Sonja says. “To see her outside, laughing and giggling and walking. You just remember, Oh yeah, she’s going to be a kid again. That’s all I want.”

Since then, the day passes have come frequently and the family, much to everyone’s delight, recently discovered a nearby splash pad.

There were a couple of bad nights this past week, however. Harper got sick when her formula backed up from her intestines into her stomach. She was in such agony, she awoke screaming, “like a possessed person,” says Jon.

That means a potential discharge date won’t be until Friday at the earliest, though the end of the month now seems more likely. Then the family will make Port Perry home once again with Harper beginning her next stage of treatment as an outpatient.

“My hope would be that she has clear MRIs for the rest of her life and lives a normal childhood and a normal life,” says Jon.

“It’s possible. That’s our hope. It would be awesome. We just got our results from the first MRI since treatment and it was clear. She’s on her way. That’s one down and a lot more to go.”