On March 5, 2019 at 8:56pm, with my favourite band Matchbox20 playing in the background the most beautiful 7lb, 11oz baby boy, Reggie, came into this world. It was by far the most amazing thing I had ever experienced.
Shortly after starting to walk, Reggie started showing a limp. A physiotherapist noticed that he had some left sided paralysis and at the Emergency room of our local children’s hospital Reggie had an MRI and a brain stem tumor was found. At 18 months old he had a biopsy done and a few months later it was confirmed that he had a Diffused Midline Glioma with no targeted treatment. We were told to start radiation right away in the hope of shrinking the tumor and to give us more time to make memories. After 30 back-to-back days of radiation the tumor shrank, the limp was gone and we had our typical 2-year-old back. We went home and we did anything and everything he wanted and we loved him as much and as hard as we possibly could.
Almost a year later things started to progress again and the tumor was growing. He had 15 more rounds of radiation, but then we stopped as it was starting to cause brain swelling and making his heart rate difficult to keep in an ideal range. Shortly after that we got accepted to try a trial drug which was taken orally on a weekly basis. We did this for a few months until the medicine started to make Reggie sick to his stomach so we quickly ended it. In August of 2022 Reggie came down with a cold, which turned into croup, which was not unusual for him. He had his usual shot of steroids, but it was different this time and we could not seem to ease his difficulty breathing. We were transferred to the Children’s Hospital where we were greeted by our palliative care team. They told us he was not recovering because the tumor had weakened his airways.
They told us it was time to start comfort care for our son and to have a possible admission to Roger Neilson House (RNH) the affiliated palliative care hospice. After a couple of days, we came to the realization that we weren’t going to get his breathing back to normal but we were reassured that he wasn’t in pain and so we went home to gather ourselves and have some last memories in the comfort of our home with family. Within a week, things started to decline and I realized I was spending too much time on the phone with doctors, home care and pharmacies trying to put things in place. Then something clicked. I called our palliative care doctor and I asked how soon we could be admitted to RNH. We were told to come as soon as we could, so we packed up, made one last trip to McDonalds for my boy’s favourite nuggies and fries and we made our way to hospice, to “the room at the end of the hall” as it is referred to by other bereaved parents.
The end-of-life rooms at RNH were at the end of the halls – 2 beautiful bachelor style apartments, private, homey and comfortable. We were met by the team, we talked about how to get our boy comfortable and how to get us all some much-needed rest. At this point Reggie hadn’t walked in a few weeks, and was losing control of his body, his ability to speak and swallow. We knew we only had a short time at this point and I knew we were where we needed to be. It was during the time of COVID, so there were still some hard and fast rules but the house was able to accommodate Reggie’s grandparents, giving them their own room to stay in so they would be close when we needed them. The staff made sure we had what we needed, that we were fed, that we could have showers and breaks. We were checked on regularly by the palliative care doctor, we were taking to the social worker about preparing for grief.
A few days later, in the night and in the depths of sleep our boy passed away while we lay in bed together. The next day the team worked hard to take care of us and to help us make even more memories with our boy even though he had passed. We were given all the time we needed and slowly coached from step to step about the funeral home. After Reggie had passed we were kept in close touch with Roger Neilson house, we were offered one on one counselling with our social worker, we were offered a bereavement support group. We were offered many opportunities to continue to celebrate and honour Reggie, even a year and a half after his passing. We are still invited to participate in events honouring all the kids that have passed away at Roger Neilson House.
The hats I wore as a parent of a life-limited child
What roles didn’t I play! It’s both a blessing and a curse when you have a child who can’t clearly articulate their wishes, who isn’t mature enough to understand. They are unaware of how dire their situation is but this leaves you as a parent the sole decision maker for every element of their life and essentially how long they will have to live it and what their life will look like. The questions are never ending. On top of that you are their playmate, their confidant, their safe place, their everything really. For Reggie, due to his young age and the fact that it was during covid, he really didn’t have much time to experience anything other than home where he felt safe and comfortable with his parents. So essentially as a parent you wear every hat. You make life and death decisions, you make decisions on quality of life, you comfort them through hard times, all while trying to offer them the time of their life. You are everything to them, 24 hours a day, because when your child has a life-limiting illness everything matters, how they spend every minute of their life matters.
The difference children’s palliative care made to me
We had emotional and grief support through our palliative care social worker. We had comfort care measures and end of life discussions with our palliative care doctors which at times were very difficult but very necessary, we had recreational therapists available to us during treatment as well as during our stays at Roger Neilson House, we had people to help facilitate memory making with our boy, through castings of our hands, and photo sessions, etc. We’ve had a lot of support since his passing with grief counselling, bereavement support groups, and many celebratory events honouring the memories of our babies passed.
I think children’s palliative care support made a huge impact on our experience and my ability to process the journey and move through the grief process. When it came to the point where I was spending time organising care when I needed to be holding my baby and just being with him through the last days of his life, that’s when I truly realised how important the hospice is and how fortunate we are to have a paediatric palliative care facility in our area. When we were admitted to Roger Neilson House I breathed a sigh of relief, I knew there were going to be people there to guide me, to make sure my baby was getting everything he needed in order to be pain free, I knew someone would be there to answer my questions and there would be someone to tell me what to do once he had died. Oddly the thought of being alone in my house with my baby dead in my arms scared me beyond belief. I knew I would not know how to function and I was so happy not to feel alone during that time and to have people there to tell me what to do, to tell me when to take a break, as your brain just kind of stops working at that point. It was as peaceful and sweet and dignified as it could possibly be and I am forever grateful for that.
What could be improved for families
In hindsight I wish we had been more involved with the palliative care team from the start of our journey. I do take some of the blame for this. I think we were briefly introduced to a palliative care doctor at a regular radiation appointment, but at the time I thought that meant talking about my child’s death and I wasn’t at that point yet. I was just trying to get through one day at a time. I realise now that this is part of the stigma with palliative care and it’s not a fair perception as end-of-life care is only one part of what their work is about. What I was disappointed by was how little our regular medical team understood about quality of life. When your child has a life limiting illness every single ailment, big or small, is affecting their quality of life and any down time is time lost, which is a hard pill to swallow. A cold, an ear infection, side effects from radiation, a sprained ankle all these things were taking away from a short life and I really wished I had someone in our corner who shared this philosophy. In hindsight if the palliative care team had been involved earlier I could have shared this with them and I would have had more of an ally going through these times.
I was desperate to find resources to help prepare me for what the death of my child would look like. There was an element of our doctors being afraid to give us more information than we could handle and there was also an element of me being afraid to ask tough questions. There are so many emotions when it comes to being a parent of a terminally ill child and the guilt is enormous. You feel guilt for thinking about what your child’s death will look like, how it will feel, what you should do. Society tells you not to think about it. I was told so many times by people to think positive, not to think about the worst case – it won’t happen if you don’t think about it and just pray for a miracle. It’s just not true and it’s just not fair to have that pressure, as if by thinking about it you’re asking for it. I found a podcast, from Australia I think, where they interviewed parents about their experiences of being with their child while they died. I found this resource incredibly helpful and comforting that other moms were wondering the same things and were afraid to ask the same questions.
The role of ICPCN
From my perspective the biggest role for ICPCN is awareness raising. Reducing the stigma around palliative care, helping families to understand the palliative care philosophy, realise its importance and access information and resources about it earlier on in their journey. We would love to say that children don’t die and we certainly live in a society that does not want to acknowledge or talk about this fact, but it exists and we need to be able to help these families give their children the best lives and deaths we possibly can. It’s so very important for families to have children’s palliative care facilities available – for respite, palliative and end of life care. It’s important that ICPCN can advocate to get more of these facilities in more areas
My message for policy-makers
We were lucky to have a place like Roger Neilson House available to us, but this is not the case for all children. Most children end up dying in hospital as it’s the only place that can maintain their comfort measures. Families deserve a peaceful environment to be with their babies as they pass. Let’s share the philosophy of children’s palliative care, reduce the stigma and get more of these facilities available.