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Rustyn

It was a fairly average week in May. Warm and dry. The air was thick with smoke from wildfires. We were all recovering from a marathon virus that we could not get out of our house, and it didn’t pick favourites. We all got the worst of it.

 

I noticed early on that week Rustyn, the oldest of my 3 seemed a little wheezy and would need to stop to catch her breath even when she wasn’t exerting herself. I wasn’t overly concerned since there were a few other things at play (being recently sick, the smoke) potentially causing the change in her breathing. Plus she wasn’t really complaining and still went on with her regular 5 year old life. I placed it on my nurse/mom radar and went on with our very busy lives.

 

As the week went on it seemed to worsen. She was struggling to sleep at night she couldn’t seem to catch her breath and would become quite anxious about it. For a couple nights she slept in my arms so I could calm her down. The nights were a little traumatic but the days still seemed okay. Late in the week I listened with my own stethoscope and decided it was definitely asthma. I figured I’d go to the walk in clinic here and tell them I think we need a ventolin inhaler and be on our way.

 

Something ended up coming up and we missed walk in hours. Sunday came and she was much worse but by that time I figured it would be easiest to just try to make a same day appointment the following morning with our family doctor since she knows Rustyn and our whole family the best and the walk in we may end up getting brushed off because it is always so busy. That night was rough on her. She woke every few minutes and would shoot straight up in bed holding her chest like she was having a heart attack. I would have to sit there rub her back and we would count our breaths until she calmed down.

 

Something in the back of my nurse brain said take her to emergency, something isn’t right. But my mom brain took over and said she’s safe. She’s with me. We are going in the morning. We pushed through a rough night and lucked out with an appointment with our family doctor who is extremely difficult to get into. That might have been the first sign we had something on our side.

 

Our doctor agreed at the appointment that her lungs sounded like asthma lungs, but to be sure she would like us to go to emergency and rule out pneumonia. I remember feeling kind of annoyed. I thought we’d get an inhaler and a nebulizer and we’d be home for supper. My phone was almost dead, we hadn’t really eaten anything, or had a good sleep all week, I still had lunch to pack and a school and soccer bag to get ready for the next day.

 

Reluctantly we went and it was insane there. From a nurse stand point I could tell the girls working were running off their feet, I felt like saying we’ll come back tomorrow, but they got us in right away and treated us like a form of royalty. As we got to our room we had a front row seat to the STARS air ambulance transferring someone out. We watched together and I said “Rustyn look! Wouldn’t it be cool to ride in a helicopter”. Sort of eerie foreshadowing for what was to come for us.

 

We went for an X-ray and some labs were drawn and it wasn’t long after that our nurse, who was a coworker and a good friend, said that peds was consulted. I remember being annoyed that we were probably being admitted and thinking this is such a waste of time, she’ll be fine we just need to let the inhaler work. It wasn’t long after that my phone rang, it was our family doctor, she gently let me know that the X-ray showed a mass. At that moment everything went black and time and space paused around me. I could still hear my family doctor talking faintly off in the distance as I held my phone in my shaking hand.

 

My knees got weak. My head felt like tv static. I thought I was going to vomit and I nearly hit the floor but our nurse caught me on her arms and we cried together. She has a little girl the same age, we were actually pregnant with them when we worked together. I knew this one hit way too close to home for her and it hurt my heart that this would be one of those shifts she’d take home.

 

Following the news, things moved fast. They informed me that she would be transferred out by STARS and the Picu team would be coming so there wouldn’t be room for me. My heart sunk thinking about her going alone but I snapped into action. I got my mom on the road to be with my younger kids with little explanation and I knocked the wind out of my husband who was home with our younger two, and told him he needed to get there immediately. He got there just in time for us to send our baby off into the air.

 

We followed behind in our vehicle and I don’t think we said a word to each other the entire 3 hour drive but both of us knew exactly what one another was thinking. We arrived around 2:30am to JPCH, got to see our sleeping angel connected to every monitor you can imagine for a few seconds before being swept off by a doctor that told us everything they knew up until that point. Our daughter had a large tumour covering her heart and compressing her lungs. They didn’t know exactly what the source was but they knew they had to act fast on it. I was sick to think this is what was causing her breathing trouble all week and I just brushed it off. I’m a nurse. And a mom of 3. I know better.

 

That night/morning I think we closed our eyes for a few seconds before the next day began and we had team members in every few minutes introducing themselves, telling us the plan, just for the plan to change.

 

The placement of Rustyn’s tumour created a whole new set of problems. In a normal (weird word to use for this) set of circumstances they would sedate the patient to get the bone marrow sample from her spine to make the accurate diagnosis in order to treat however if they sedated Rustyn there was a high chance that her tumour would break apart and block her airway making intubation near impossible. Throughout that day we had team members in and out discussing this with Kevin and I and giving us a few options on how we could proceed, we could take the risk, sedate and have ECMO as backup, or we could not sedate and give a high dose of analgesic and numbing cream. To say we were overwhelmed would be an understatement. We were running on what felt like a few minutes of sleep, Rustyn was still struggling to breathe and becoming very impatient with the team members that kept coming in, the IV pokes, the tubes and cords and beeping monitors, and it had been well over 24 hrs since she had eaten or drank as we were awaiting the plan of prepping for the OR. Stresses were running extremely high and it felt like the clock was ticking even faster for all of us. Finally they settled on the plan that they would jump around on the typical algorithm and start steroids and the chemotherapy which would be used after diagnosis in either treatment (lymphoma or leukaemia) path. The goal was to shrink the tumour enough to comfortably sedate and proceed accordingly. The steroids worked like magic and everything went much smoother after that. It felt like I finally got my girl back from the other side.

 

We continued with a couple days of steroids and simplifying a few things as far as pokes and tripping over cords and we were sort of finding our groove there. Word travelled quickly about rustyns bravery back in our hometowns and suddenly we were receiving gifts from every direction. The love we felt when our lives were in a puddle on the floor is a feeling like no other. I felt so proud of the girl we had raised to that point that so many people who knew her and us wanted to make sure she knew they were rooting for her.

 

Late that week she got a dose of Ativan and went for a ct late that night, the next day would be the hardest day I’ve ever experienced as a mom. Early that morning they prepped her to be taken to the OR where they would do her lumbar puncture and picc insertion with all hands on deck. I went with her into the OR and she told me she was scared and she didn’t want me to go and she didn’t want to do this, she just wanted to go home. I held her hands and myself together (barely) until she went to sleep and then fell apart in the nurses arms for the entire duration of the procedure. She returned to me sleeping and woke to ask me to lay with her. I was so thankful everything went smoothly and my girl beat her odds. I saw her strength more than ever and I felt such honour to be her mom.


That night she fell asleep in my arms like she used to do when she was little. I didn’t care that my arms would go numb, she needed them more than me. It was the last night I let myself pretend it wasn’t real. The last time I told myself they were going to walk in and tell me they made a mistake, I was right. It’s asthma and we can go home. It was the next day we were informed of her preliminary diagnosis of T Cell Acute Lymphoblastic Leukaemia pending the results of her cerebrospinal fluid. The nurse in me knew, the mom in me broke. My soul had left my body. A parents worst nightmare was happening to us and I couldn’t figure out why.

 

Chemo started as soon as the preliminary diagnosis came along even though they didn’t have the sample back, they had enough information to proceed with treatment. She handled it all extremely well, enough for them to decide she didn’t need to be in picu anymore and after a week there we moved across the hall to the ward. It was there we were given our official diagnosis and the two treatment paths we had to choose from.“

Continued in comments

 

Because she fell into a bit of a grey area due to her age, typically the algorithm says to treat 5 and under and 6 and up, and Rustyn would turn 6 two weeks into her treatment. Her white count in her CSF was also sort of on the cusp, because of these factors she would be considered high risk and would be treated as though she was 5 instead of 6. Our two pathways were both quite intense as would be expected, the first was chemotherapy over the course of a year-ish and then cranial radiation. This would have us done treatment sooner but it was a much higher risk of complications with the radiation. The other had no radiation but more chemotherapy. This one would run over 2.5-3 years if she continued to tolerate well and less short and long term complications, but a higher risk of relapse later on. It felt like we were being asked to choose between two wrong answers. Ultimately we decided to avoid cranial radiation and went for more chemo, we essentially said goodbye to the life we knew.

 

Rustyn continued to do very well and on the day of her 6th birthday we were given the thumbs up to move over to Ronald McDonald House across the street and going back and forth for treatment. While her treatment initially required us to be close to the hospital it was incredible to have our younger siblings with us again and feel somewhat of a sense of normalcy again.

Rustyn finished off her first block of treatment at the end of June and after 31 days away from home we got to go home for a break in between cycles. The air we exhaled when we finally pulled into our yard and saw our dog again and slept in our bed again was like nothing I can even describe. The feeling of home. My heart was put back together.

 

Our break was short but our time at home was our fuel to keep going. We returned for her next cycle and I even found a daycare in the city willing to take our younger kids for the summer months so we were able to be together again. We got to return home on weekends and we slowly figured out our new way of life with all kinds of roadblocks and hills and quicksand and

snakes and snapping crocodiles along the way.  But no less. Figuring it out.

 

Flash forward to now Rustyn is in her 5th block of chemotherapy and continues to manage it all extremely well and we have our end date in 2025. It seems far away but it’s on the horizon and it’s nice to know there will be a day we can look forward to and put this all behind us and know we are stronger because of it.

 

She has been able to go to school a little bit and she even got to join a minor hockey team. She’s been shown so much love and support from various organizations in our home city including her school, the minor hockey association, etc. our friends and family have gone above and beyond in so many ways I can’t even make it make sense, they even banded together to get us Taylor Swift tickets in Toronto (we are the biggest swifties you’ll probably ever meet). We have been shown how many wonderful people we have in our lives throughout this journey and it fills my heart. I can’t express my gratitude enough.

 

I’m honoured to join and be a part of the Little Wonder’s program and feel that sense of community. I learned early on that leaning on others you relate with sometimes helps prop you back up so you can walk tall again. Once I reached the acceptance part of this journey I decided I would do everything I could to offer my hand out to other families struggling. I’ve experienced the shock of a lifetime going through this crisis and instead of having pity on myself I can be a support for people that never thought it was going to be them, because that was me. I couldn’t figure out how it chose my sweet girl who never had a single health issue prior to all of this, she had never even visited the emergency room before that night. The trauma is something you can’t understand until you’re in that moment and I’m grateful I’ve been able to connect with other families going through similar experiences or that have in the past. It eases the hurt just a little to know everything you are feeling and experiencing is normal and part of the process. I may not have got through all the hurt but I’ve allowed my heart feel what it needs to feel. We are all here growing and learning everyday and we have a lot of people to thank for that. I hope that I can be someone’s support when they feel like the world isn’t being fair. I hope that when they fall they can accept my hand and I can help them back up like so many have done for me.

 



 

 

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