Taking place from June 4-5 the Janeway Children’s Miracle Network Telethon is a yearly benchmark to help highlight stories of bravery and perseverance over illness and injury. Stories of glass half full mentalities and sunny dispositions through storms.

The Janeway Children’s Hospital receives numerous pediatric patients annually, from premature babies weighing less than 1,000 grams to 17-year-olds on the cusp of adulthood. Each and every child has a story to tell, and we at The Newfoundland Herald take pride in highlighting the stories of these champion children.

The 2022 Janeway Champion Child is Xavier Rodrigues, an extraordinary young man whose optimism and courage in the face of Crohn’s Disease serves as an inspiration to any and all who meet him. This is his story. 

*Answers provided by Xavier’s parents Nancy and Lionel Rodrigues

Can you briefly describe your relationships with the staff at the Janeway? Particularly in those early days, pre-diagnosis? Anytime a child is hit with a health event there is obviously stress and it takes a very special staff to help navigate that.

Before Xavier was diagnosed, we were going to the Janeway ER each week, trying to figure out what was going on with him and why he was so sick. Xavier would be sent for more tests to rule out what they thought it might be (virus, infection, etc) and then we would go home. 

It felt like it was taking so long at the time to figure out what was going on. Watching your child get weaker and weaker, not able to eat anything. Eventually after about three weeks he was admitted and diagnosed with Crohn’s Disease. After Xavier was diagnosed we learned that sometimes it can take years for a Crohn’s diagnosis. 

The week we spent in the Janeway while Xavier was getting treated and diagnosed was a very difficult and emotional week. The nurses and doctors were so supportive. Dr. Critch got him in for a colonoscopy very quickly, considering how tight the OR schedule is. 

The nurses were so sweet. They got really good at taking his temperature and blood pressure in the nighttime without waking him up. Everyone was really supportive. Dr. Critch immediately focused on what we could do – the treatments available. There’s currently no cure for Crohn’s Disease. 

For a child undergoing treatments on a regular cycle like Xavier, and one who has to navigate certain adjustments with his lifestyle, how important is routine and finding positivity in what can be done as opposed to can’t?

Routine is pretty important, but more so for things like school and extracurricular. Of course the routine of taking medication, getting blood work, diet etc. is important in treatment, but also just being a kid is super important. 

Xavier has had many adjustments to his lifestyle since getting diagnosed. He has been on a special diet for a while now which means he doesn’t eat the same things as his peers. Xavier eats very little processed food, refined sugar and grains which means his school lunches look very different than his peers. 

As a result Xavier’s palette is much broader than the average 13-year-old (or truth be told, the average Newfoundland adult). Xavier is a very positive person overall. He doesn’t focus on what he can’t eat or what he can’t do. He doesn’t dwell on the negative. 

Xavier is really good at letting things roll off his back, and moving on to the next thing. 

Many say the staff at the Janeway are like family, particularly when you make frequent visits. Have you grown to make connections to staff? I’m sure they know your names and faces by now.

We have been very blessed with the staff at the Janeway. Dr. Critch, GI specialist, has been very accommodating to us. If Xavier is suddenly ill he will call us back as soon as he can. 

He has been very patient with explaining options, etc. to us. Jackie Connolly, GI nurse, also is very quick to respond and has been a huge support to us, going above and beyond regular duties. She is an angel for sure. 

And then there are the Janeway Medical Daycare staff. I’m sure the best of the best are chosen to work there. Such beautiful, compassionate, empathetic, thoughtful and kind people. They are like family now that we have been going so regularly for the past six-plus years.

For any family tackling health struggles for a child, would there be any advice you can offer, particularly as far as staying optimistic and living life with a glass half-full mentality? 

For any family tackling health struggles for a child, the best advice we could give is to take care of yourselves. When your child is sick you can become like a machine, doing what needs to be done. But sometimes, especially when you have gotten through a rough patch, you realize how exhausted you are. Or how emotional you are. 

We forget to take a moment, or to take a breath for ourselves. Reach out to people in the same boat. We forget that there are people out there with the same or very similar struggles. Allow people to help you, to listen, to step up. It does get better. It becomes a “new normal.” 

Xavier says all the time that he forgets he has Crohn’s. That to us is success. He is still able to be a kid, and this disease doesn’t define him. Xavier finds the good in everything, and we could all aspire to be more like that.

Tune in to the Telethon

Saturday, June 4th, 6:30^pm – 9:30^pm* Sunday, June 5th, 12:00^pm – 7:00^pm*

I knew what I was getting into when I married a nurse, or at least I thought I did. 

I shacked up – proudly I might add – with a nurse coming from a long line of nurses. 

Mother, aunt, sister, all proudly serving in the profession of healing and helping the sick and vulnerable. What could be more rewarding, I’d wonder?

I thought I knew what came with the territory: long hours, physical and emotional exhaustion, the occasional mood swings not of my own making. It was all there in the unofficial fine print on my marriage certificate to a first line health care worker in the province of Newfoundland and Labrador. 

What you don’t see, and couldn’t possibly prepare for, is just how rigorous the act of helping and healing is. The often thankless days and nights, the degeneration of the body in almost real time, the constant need to wear a brave face. The tears that flow from the constant barrage of loss. Seemingly unending waves of loss.

Pandemic Burden

No, you’re never ready for just how heavy the job is. You can spout your hollow yet well-meaning sentiments, your words of compassion and try to come down to the level of worker-bee, but unless you’ve walked a day in their shoes and scrubs, you know nothing. You’ll always know nothing.

Take an already demanding profession and throw in a worldwide pandemic for good measure. A recent study from the Canadian Federation of Nurses Unions (CFNU) found that 94 per cent of nurses are experiencing symptoms of burnout, and 50 per cent of nurses said they are considering leaving their jobs over the next year. 

“Frontline health workers have had to shoulder too much of the pandemic burden – worsening patient ratios and forced overtime while facing increased violence, harassment and unsafe workplaces,” shared Linda Silas, President of the Canadian Federation of Nurses Unions (CFNU) in a release this past March “Nurses across the country are coming together to say enough is enough.”

So what can we do? Aside from the policy-makers and those at the top of the bureaucratic food chain, who can implement real change, what can we, the husbands or wives, the sisters and brothers, friends or work colleagues offer? You sponge it all in. 

Take the stress, the anger, the sadness, the exhaustion. Wear it like armour so your loved one doesn’t have to buckle under the weight of it all. You wear it, because we the layfolk have no idea the weight these workers shoulder. Not a single solitary clue. 

Never enough thank yous

May 9-15 marks National Nursing Week across Canada. It’s an occasion to give our thanks to these tireless workers who make up the bedrock of our healthcare system. 

Let this week be a reminder of what we collectively could and should do for frontline health care workers year-round. Shower them with thank yous. There are never enough thank yous and they generally do make an impact.

Buy a nurse a coffee, send them a card, offer that hug, handshake or genuinely needed pat on the back. These pittances of acknowledgment can only serve to galvanize a workforce in much need of positive emotional reinforcement. 

So thank you nurses. From mine, to yours, and the faceless heroes toiling in the shadows. There are never enough thank yous.