Edmonton hockey mom faces crucial decisions as caregiver

Son will need assistance for the rest of his life

[slideshow_deploy id=’69713′]
Hover over image to read caption

EDMONTON, AB, Jan 6, 2014/ Troy Media/ – Marlene Webb-Halliday and her husband Scott Halliday are hockey parents. They live in Edmonton, raising their four boys and are dedicated to their annual cycle of hockey, soccer and baseball, mixed with summer camps, road trips and, of course, school with all of its activity.

In 2011, two of their boys, Nathan and Gilbert, now young adults, had jobs and girlfriends and newfound independence. Their youngest, Quaid, then 11 years old, was a hockey hot-shot for his age.

But Wyatt, then 13, couldn’t play hockey anymore. He had broken his wrist too many times . . .

At first, his symptoms were subtle, yet progressive. His clumsiness turned into a significant limp and the boy described as “easy going” and “willing to help with anything but the kitty-litter” was forgetting names and nodding off to sleep at his desk at school.

By May 2012, Wyatt, who had played and refereed hockey, rollerbladed, rode bikes and mastered the monkey bars when he was little, who had met all of his developmental milestones, was randomly falling, blacking out and sleeping far too much.

One morning, while winter camping with Boy Scouts Canada, Wyatt was found in his tent, asleep, having kicked the sleeping bag off. He was in a hypothermic state and rushed to hospital. His own temperature sensors did not wake him.

Doctors first thought he had Cerebral Palsy, but the symptoms didn’t fit. A neurologist was called in. Wyatt spent five weeks at Stollery Children’s Hospital in Edmonton. The doctors couldn’t reach any conclusive answers so he was transferred to Glenrose Rehabilitation Hospital, also in Edmonton, for four months to receive help in managing his condition. But the degeneration continued. There seemed little that could be done.

“The first time I was on leave (to care for Wyatt) it was for six months,” said Marlene, a business advisor at ATB Financial. She took time off from June 2012 to January 2013 to be with Wyatt daily at the hospital because he was suffering from short term memory loss.

Wyatt’s condition worsened over the course of the next year. He couldn’t walk without assistance; blackouts happened frequently; his speech deteriorated. And, still, no one knew why.

Every test the doctors performed came back inconclusive or normal. His file was sent out to Houston, Atlanta’s Centers for Disease Control and Prevention, as well as to Boston, Toronto, Montreal, Calgary, Vancouver and San Francisco – even Europe – to no avail. “Wyatt is writing his own story,” doctors would say to Marlene and Scott. “We just have to wait to see what happens next.”

In June 2013, a “metabolic storm” is what happened next. While watching television, Wyatt’s temperature rose to over 41C (105F). His body went into convulsions. He was transported to the hospital by ambulance where he spent seven days stabilizing in intensive care (ICU) while doctors searched again for the cause.

An updated MRI revealed a tumour in Wyatt’s brain the size of a grape. On the Canada Day long weekend doctors performed three life-saving radiation treatments. Twenty-seven more radiation treatments, then chemotherapy, followed. The chemotherapy is ongoing. He’s been in hospital ever since.

. . .

Marlene gets up in the morning, makes Quaid’s lunch for school then spends a few moments with him before she gets ready herself. She then drives Quaid to school before heading to the hospital.

She arrives at 9 a.m. and meets with Wyatt’s pediatrician to go over Wyatt’s condition and schedule for the day. She helps Wyatt eat his breakfast. She prefers to handle Wyatt’s personal care. The catheter is removed and she changes his briefs, which are actually Depends with Pampers diapers that she purchases herself.

To keep Wyatt’s dignity intact, Marlene insists that nurses call them briefs . . . not diapers.

An occupational therapist comes in daily to work on Wyatt’s right arm motor skills and his writing abilities, and they educate Marlene to prepare her for when Wyatt returns home.

Wyatt spent Christmas Day at home this year. Marlene was informed of everything involving his present care, from medications to what equipment he would need. Marlene’s Christmas Wish this year was for a wider front door as Wyatt’s wheelchair doesn’t fit through the current one. As a result, Wyatt is carried in, which is not as safe.

A physiotherapist also drops by Wyatt’s hospital room daily. During physio, Wyatt is strapped into a suspension walker from his shoulders all the way down to his ankles.

Just before Thanksgiving, Wyatt was able to walk 200 metres. “It was one of his best days,” said Marlene, but then another setback put him back into ICU for another seven days. Since then he can do about 20 feet. “If he’s tired he starts to have drop-attacks (blackouts), they take him out of his walker [back into his wheelchair] because over-stimulation is dangerous for him and his condition.”

She helps him eat his lunch. “I’ll load the spoon and he’ll put it in his mouth, or he will feed himself,” said Marlene, depending on how tired Wyatt is that day. Chemotherapy treatments make him more tired than usual.

Wyatt needs a special stretcher that straps him in, along with professional help, when he showers. Marlene tries to get him to shower every second day. A bath is preferable, but it takes a special lift to place him into the tub.

After lunch, she then takes him to the teen room for some recreation and social time. Young patients and their siblings up to age 17 can play video games, watch movies or do craft work. Marlene is impressed with Sandy, who runs activities in the room. “She is phenomenal with the kids,” said Marlene. It is during this time that Marlene either sits and observes, or takes the opportunity to eat, herself. “Otherwise I don’t eat,” she said. But she loves to watch Sandy and Wyatt interact. “I trust Sandy implicitly,” she said.

Marlene also observes other young patients who are coping with their illnesses – some of whom has given her inspiration. A young amputee was a recent source of strength, as she happily said goodbye to her diseased leg by celebrating, eating cake in the shape of a leg.

Afterwards, depending on Wyatt, Marlene takes him to Stollery’s (in-house) public school where he works with one of three teachers to build upon his memory skills. “They prefer to work with him in a one-to-one setting rather than in the classroom, just to limit the distractions,” said Marlene. “Oh, and Teacher Tom is great,” she said, which is a point that both Marlene and Wyatt agree upon.

Wyatt also works regularly on his speech. “Some days it’s good, some days it’s bad,” said Marlene. Everything depends upon how tired he is. Dinner comes at 4:45 p.m. She helps him to eat, once again, hopefully before he falls to sleep.

“Generally he’s a good eater,” said Marlene. “They give him double the amounts and he’s actually gaining weight, which is fabulous. He is still growing because now he’s actually taller than me,” she added with a laugh.

Wyatt usually finishes dinner by 6:30 p.m. Marlene then decides whether to either stay and prepare Wyatt for bed or allow a nurse to do it. She stays, however, if he has undergone chemotherapy. She usually arrives back home anywhere between 6 to 9 p.m. to a dinner usually made by Scott, who is doing his best at home. She then spends some more quality time with Quaid.

If she wakes during the night, she calls the hospital . . . . “I can’t get back to sleep unless I call and check up on him.”

It is likely that Wyatt will never walk again or be able to be independent of care. He will need assistance for the rest of his life. As for his awareness, no one is sure what level he is at right now. Psycho-educational tests, which study mental abilities and behaviour, are in the plan; however, “he won’t be tested until after chemotherapy is done,” said Marlene, “because the results might be skewed.”

Since August of last year Marlene has been on leave from work again. “(ATB Financial has) been very supportive,” she said. While away from work Marlene monitors her responsibilities via her cell phone and email.

Her husband, Scott, a mechanical engineer, was laid off some time ago and has had difficulty in finding work that will accommodate his need to both support his family and be there for his son. He took a job as a lot manager at a local car dealership to help make ends meet.

The older boys help when they can and they know that they will be needed much more when Wyatt finally returns home. Quaid has become more self-reliant at home and is engaged in school and hockey. The hockey mom that she is, Marlene has promised to attend every one of Quaid’s hockey games.

Wyatt’s hospital stay continues, with at least another four months of chemotherapy scheduled. In the meantime, extensive renovations are required to the Halliday’s two-storey style home in order to support Wyatt’s needs when he is discharged from the hospital.

The Halliday’s finances, including their life savings, have been depleted over the last two years. Marlene is now a caregiver, which supersedes the sports mom, the wife and the professional, though she still fulfills every role as best she can.

Ask her any questions about Wyatt’s condition – his medication lists and purposes, his test results and reports, (which she doesn’t fully understand, but will ask questions until she does), his needs, his wants, his emotions – or the score of Quaid’s last hockey game – and she will have an answer.

“I’m running on adrenaline,” she says. “And I’m tired.” This cycle of a caregiver – caring for Wyatt as much as she can while still running her home life with the rest of her family – will continue until she brings her son back home. And then a new cycle will begin.

Marlene is consumed with financial concerns – the wolves are fast approaching her door. “We consider ourselves very proud people and this is very humbling,” she said.

While some of the equipment Wyatt needs is subsidized by the government, each new device needed costs Marlene and Scott up to $500, with the government assisting on the balance.

Marlene’s co-workers at ATB Financial have done a fundraiser to help support the family. Even their son Gilbert’s employer at Panago Pizza donated a day’s worth of pizza sales, one dollar for every pizza sold, to help out with Wyatt and his family’s needs for renovations to their home.

So far donations have gone towards equipment that Wyatt needs: the walker, (a Rifton Pacer Gait Trainer), an electronic bath lift and a wheel chair, a laptop to house software that will help with Wyatt’s memory and cognitive skills. However, “We haven’t been able to buy the software yet,” said Marlene. But so much more is needed to make their home livable and safe for Wyatt.

Donations can be made to Help Wyatt & His Family

Barbara Webb is Troy Media’s Family Ties columnist. Wyatt is her nephew.

[wp_eStore_subscribe_fancy id=386]

© Troy Media

One Response to "Edmonton hockey mom faces crucial decisions as caregiver"

  1. Avatar
    Troy Media   May 13, 2014 at 11:15 pm

    Wyatt passed away on May 11.

You must be logged in to post a comment Login