I Never Thought I’d See the Day That My Daughter Would Become a Cancer Statistic

I know that I’ve made promises to write about the different things that I’ve encountered and I haven’t gone back and done that…yet. Today, I’m going make good on my promises, and begin by going back. I’m going to start with my daughter Caelan, followed by my sister, Lea. I’ve been trying to mix things up because writing and reading about some of these topics is difficult and uncomfortable. I get it, most people don’t want to read it because they aren’t affected, it doesn’t interest them, or it’s just plain sad. And that’s okay. If you do end up encountering something similar down the road, I hope that you remember me and my story.

I write because when the time came for my ‘reality’ to rear its ugly head, I had nowhere to turn. I take comfort in reading other’s experiences and found myself very limited in what I could find. As human beings, I think many of us seek to find others who share in similar circumstances or understanding. It’s a security mechanism of sorts, safety in numbers, or maybe it’s just the comfort of confirmation and validation of our thoughts and feelings. We’re all different, so I’m sure there’s a number of things surrounding this. I tried to reach out because I felt completely alone in those moments. Having the ability to connect with someone who has been there, would have been a life altering experience for me.

I desperately sought after someone who was in the same boat many years ago. I felt that having someone, and I mean anyone, would’ve helped to navigate the waters. To have someone to be able to ask questions to, bounce ideas off of and learn about the experiences and consequences of each action they’d undertaken, would have helped me navigate my own journey. I felt very isolated, and having a life line like that would’ve made me feel a lot less lonely, if you know what I mean.

With that, I feel that I can’t hide anymore and should tell the stories that have made me ‘me’. I’ve been avoiding it because it’s scary to think about what might have been, and because I’m honest, I’m very afraid of what may still come. Some emotions are ‘hard’, and the ones that I’ve had to ‘slough off’ and ignore while going through this, continually haunt me. I know that they will continue to do so until they’re finally understood and allowed to be worked through.

It’s interesting and inspiring how each one of us deals with our challenges and how unique we all are in regards to our healing processes. Mine has been surprising. In reading many of the stories that I’ve encountered since beginning this written journey, I have discovered different ways to heal, many that I’d never considered, and for that, I am grateful.

Moving forward

I’d been swept up in life before I could dedicate the time to deal with my feelings, and once I began the process of trying to understand, reflect, heal and move forward, I was sidelined yet again. I can’t keep letting there be an excuse for putting this on the back burner because not dealing with this, will have far greater consequences. So, I’m asking that you bear with me through this process, and I hope that if you choose to follow me on this journey, that you find something in it for you.

So, without further ado, I’d like to just give a prelude as to what will be coming from me shortly, in the form of moving forward with Caelan’s story. Without the information I am about to share, nothing that I write regarding her story, will be anything different than what you’ve already read. Why? Quite simply, not everyone walks this path. Very few as you are about to see, and an even fewer bunch, lose not only the life they had created, but the child it was created around. I feel very fortunate to still have my child and I feel a deep pain for those who cannot say the same. My condolences to those families, you are in my thoughts every day.

It’s hard to believe that we were basically struck by lightning nearly 4 years ago. I shouldn’t say we, I should say Caelan. It’s astounding to think how one tiny, seemingly insignificant event to the world, turned ours completely upside down, and many around us. It’s a mere blip, statistics wise.

I always find it ‘fun’ trying to dig through the numbers to actually establish a true statistic as to how many children are diagnosed with cancer in Canada each year. I don’t understand how a simple question, cannot be simply answered. I punch in, what country has the most cases of pediatric cancer? for example, and what I usually get back, is a lot of fluff to dig through. I just wanted a quick search with a quick answer, but it’s complicated I guess. Maybe I give the little ‘brain’ (cell phone) in my hand far too much credit or maybe I just need to hone in on my searching skills. Anyway, I did find this, and I wanted to share it with you in advance.

The numbers

In case you’re interested in how ‘lottery winning’ and ‘struck by lightning’ this occurrence is, I found statistics stating that the average number of cases in Canada between 2008 – 2012 was around 943 cases a year. Apparently, this represents less than 1% of cancer cases nationally. I was pulling this information from www.cancer.ca, if you’re wondering. Before Caelan’s diagnosis, I think I’d found something that said 1,500 cases of pediatric cancer were diagnosed each year in Canada, but I have no idea where I’d found it. I apologize for not knowing how to cite sources but I just wanted you to know I wasn’t pulling this information out of my ass or anything.

It’s insane when you think about it. Canada has what, approximately 37.5 million people currently? And, out of that many, I’m guessing there are approximately 10 to 11 million children in Canada? My kid, ended up representing a very tiny but very significant statistic.

To break it down further (from the same website I linked to earlier), Caelan’s type of cancer (Non-Hodgkin’s Lymphoma) represents about 11% of cases in the 0 – 14 years range and in 2012 – 2016, only 160 children were diagnosed with NHL in all of Canada. In some of the things I’ve read, Caelan’s sub type of Non-Hodgkin’s Lymphoma, Anaplastic Large Cell (ALCL), affects boys more often than girls, some information saying as high as 6 to 1. Small club she’s in, now that I see it.

I just wanted to share this information prior to my usual post because for me, as a mom, I find the numbers absolutely staggering. Honestly, it makes me want to vomit. Before Caelan was diagnosed, I’d been desperately trying to figure out what the hell the lump was that had been growing on her neck and many times, without fail, cancer just kept coming up. With those cancer searches, statistics kept popping up too and I desperately tried to convince myself that my daughter didn’t fit into those numbers because it was just so ‘rare’. She couldn’t possibly have it, not my child, no way.

The chances of her having cancer, was slim to none in my rational mind but I found myself locked in a struggle between my sixth sense and gut feeling on the other side, telling me it was. The oncologist we met kept reinforcing that it may not be cancer as well, right up until we received the official diagnosis. I don’t know if they understand how difficult it is to do an about face once that switch has been flipped, but it’s next to impossible. We’re only human and coming to terms, takes a little more time.

I still struggle with accepting that my daughter had cancer, and that sounds funny because it’s been 4 years since we entered and exited the very new and mysterious life of living through and with it. It had been completely foreign to us. I don’t know if it’s because we still live with the reality that she could relapse or suffer the consequences of her treatment but it’s something that will probably be with us forever. That’s been our ‘new normal’ for the past couple of years.

I hope that these little tidbits of information provides some insight and a little understanding about the journey my little one has had to navigate. I hope that you stay with me as I share Caelan’s story and the impact that it’s made in our life. If you’d like to follow along, I started this story a while back and you can read that here. To be continued…