Staging…And I Don’t Mean A House Or A Movie, I’m Talking About My Kid’s Cancer Diagnosis

As I wrote about earlier, I fell into reading and researching anything and everything about pediatric Anaplastic Large Cell Non–Hodgkin’s Lymphoma, after receiving confirmation from our pediatrician that this was what our daughter had. It should come as no surprise that information was quite limited, due to the fact that so few children are affected by it. In addition to that, I was still missing a key piece to this puzzle, the stage.

Ah yes, the stage. A number assigned to emphasize its severity. I was definitely naive about cancer before all of this, let me tell ya.

I honestly felt that if someone told me that they had cancer at stage 1, 2 or 3, that the outcome was that they’d be just fine and dandy with a few treatments. For me, stage 4 was an automatic death sentence. I can’t believe I just confessed that publicly, here’s to honesty.

I gave myself a kick in the pants for that one after I realized how mistaken I was. Looking back, I am ashamed of myself. There are no guarantees with this disease, none. I feel like such a fool for being so insensitive.

On with the show

Anaplastic Large Cell Non–Hodgkin’s Lymphoma, known as ALCL in medical literature, seems to have a vast array of outcomes dependent upon the extent of spread or stage of the disease (I also think it depends on the person too, we’re all different…as I keep saying). As such, there is much to be done in order to determine the stage (of any kind of cancer really) and Caelan was only in the middle of the process at that time. I don’t know if many truly understand how much goes into cancer staging and the pretreatment preparation process, but it can be extensive.

I found it to be an insane process. As if surgery on a child isn’t enough, there’s more on top of that that has to be done before making any treatment decisions. I feel like every chapter of this story was grueling in its own right, but staging was probably the most emotionally challenging for me by far. So many things were happening all at once and it made my head spin.

When Monday finally rolled around, we waited in anticipation of the phone call from the pediatric oncology clinic. We already knew, so they would too. The ball was in their court and we already had our boots on and on the ground. It was go time.

The phone call

I remember the phone call like it was 5 minutes ago. At 3:40 p.m. that afternoon (I’d kept a journal but didn’t get to finish much after this point unfortunately), after their closing time, my home phone rang. I packed that damned thing around all day, everywhere I went, just waiting for it to ring with their number flashing on the caller ID screen. I know, have patience. Normally I’m very patient but ehrmagerd…waiting kills me.

I answered and a lady asked for Clem or I. I confirmed that I was who she was looking for. She said they had our results and asked if we wanted an appointment the next day, or the day after.

I was like, really? Why not now? At that point, I told her that we already knew because our pediatrician told us. That was the prompt that gave me dead air, complete silence.

I felt like either the pediatrician or I, broke some kind of forbidden rule as her silence continued to float, suspended in mid-sentence. Behaving in a surprised manner is one thing, but this seemed to be a different reaction entirely. After a moment, she collected herself enough and said with surprise, “You do?”.

Intriguing conversations

“Yup. I know she has Anaplastic Large Cell Non-Hodgkin’s Lymphoma.”

More silence. I was beginning to wonder if there was some kind of investigative agency standing behind this woman, coaching her through the conversation while they tracked down who told us such sensitive and blasphemous information. Seriously. We should have the right to the information, it’s about ourselves, is it not?

I just find the whole premise ridiculous. You’re not the CIA and honestly, the amount of sensitive information leaks within this realm is deplorable. Maybe it’s time to pay perps more money to create and man your security. Just a suggestion. On another note, it’s pretty well impossible to take any kind of legal action against anyone within the medical faculty here, so why the bizarre and inhuman behavior?

She then proceeds to ask me who told me this information, so I told her again that the pediatrician was courteous enough to call us Friday after he finished work. I then asked if he was in trouble. Again, silence…seriously? I finally decided to just put it out there.

“You know, it was probably smarter that the pediatrician called and told us this news at home, instead of telling us in person and then turning us loose to drive home in a daze for an hour. If he’s in trouble, I accept responsibility because I appreciate his honesty and courtesy.”

She quickly says, “Oh no, he’s not in trouble, not at all. When did you want to come in?” Yeah, I believed her…

She had to ask? How about now? We wanted to know now, they were already on the phone, so why not now? Sadly, they don’t do it that way. I know, I gripe about this a lot.

At the mercy of centralized medicine

I’m sitting here remembering the day my sister got the call about her test results. She had her family doctor watch for them because the specialist she saw for the biopsy insisted she drive to his office over 2 hours away to get the news. That would’ve been approximately 4.5 hours of driving for a 5 minute appointment…with time in the waiting room, probably over an hour, maybe longer. Did he know that she had a phone?

I often wonder what happened to the smaller, fully functioning hospitals in towns all over the place? Oh yeah, centralized medicine, right. It works extremely well with our vast provinces…not.

Need medical assistance immediately? The difference between needing medical assistance and a hearse in this province, depends on how long you can go without oxygen. Long enough for a 2 hour drive or a 45 minute medevac? I think that answers the question, doesn’t it? I’m not a fan, obviously.

They were basically going to withhold the information until Lea complied with the specialist’s wishes, and travel to see him. Obviously, they get paid more by the visit and don’t want another doctor to capitalize on taking an appointment away to give a patient their results. Thank you centralized medicine, for being so accommodating and accessible.

Lea’s kids were very young, and she was anxious about leaving them for any length of time, so that wasn’t an option for her. Once her results finally made an appearance in the system, she went to an impromptu appointment by herself, with only her family doctor there to break the news. I’ll never forget that.

It’s sad that it took Covid to finally spur some change. We should’ve been able to contact doctors using all of this wonderful technology years ago. Kind of stupid actually.

Anyway, we booked an appointment for the next morning to go over the results they had because we had no other choice. In hindsight, it pisses me off that Caelan’s file probably sat on a desk all day until they finally felt like calling. I’m not sorry for saying this and I know it’s not a wonderful conversation to have with anyone, but people put everything on hold for news like that.

All I’m asking for is consideration. If you work somewhere like this, call as soon as you get the chance, please. Be a decent human being. To have to ask this of anyone, makes me sick.

Taking time to be sick

I immediately rang Clem up at work and told him about the call so he could book time off the next morning. Although we sort of work for ourselves, Clem’s work is commission based. If he doesn’t work, we don’t eat.

I don’t think many people contemplated the financial implications of having a sick child or of being sick before Covid hit. What I mean is, you know, but you don’t truly know. I’m thankful that we didn’t lose everything, but I’ll be honest in saying that despite Clem being able to work through this (not at full capacity) we did take a hit financially. I guess that’s a new mantra, you don’t know, until you know.

We awoke the next morning, packed up the girls, and off we went to the hospital. I remember having that familiar fear and anxiety trying to bubble up, but oddly having peaceful moments for some weird reason. I don’t know if I just accepted that I couldn’t change anything at that point, and worrying was truly useless or if I was finally worn right down and had just become passive.

All the fear and worry do is suck the life out of you, and it’s true, it doesn’t change a thing. It’s normal to feel it, but adding to it, isn’t worth it. The deception of seeing my daughter run around like a normal kid, but knowing that she had cancer was a total mind fuck.

Another hospital visit

Once we arrived at the hospital and made our way to the oncology unit, it hit me that the unfamiliarity of the place was beginning to dissipate and that this was becoming second nature. No one wants to frequent a hospital, and no one wants that for their child. As we walked by other kids and their families, I began to wonder what they were there for.

It felt like prison. I’m assuming because I’ve never been, but I caught myself walking by people and wondering what they were in for. Now that I think of it, the similarities are uncanny, well for me anyway.

As we checked into the unit, we were met by our soon to be assigned nurse and the oncologist we’d dealt with in our previous visit to this unit. I’ll never forget how she kept assuring us that it wasn’t cancer yet, despite the surgeon insisting the opposite. Talk about 180.

They ushered us back out into the hallway, wondering aloud where we should park it and chat. We ended up in a small meeting room just down the hall. I suddenly felt like I was going to vomit, pass out and break down in hysterics all at the same time. My skin crawled. A quiet room down the hall could only mean bad things.

Round table meeting

As we all shuffled around a table that was far too big for such a small room, we all took a seat. The oncologist began with reiterating what Caelan’s pediatrician told us about the biopsy. She then told us…and I was holding my breath up until this time…that we managed to catch it early.

Another lightning strike, but a lucky one? Holy shit, thank the creepy leprechauns…I think? Honestly, it was like winning a lottery that no one wanted to win.

I’m grateful that we caught it early because I know there are many who aren’t as lucky, my sister was one of them. I don’t wish this disease on anyone. Cancer sucks, period. There’s just no other way to say it.

They felt confident that it was stage 1.

According to the PET scan, the lump in her neck lit up like a Christmas tree, indicating that it was localized. A small spot in her stomach also made itself known, but they believed it wasn’t cancer. Caelan had to have an ultrasound to confirm, but thus far, they were confident that it was caught early and that she could be cured. They did say that they didn’t see too many kids with this type of cancer, and that made me a little wary.

Caelan and Lola were happy to hear that it wasn’t the bad news we’d prepared them for. Prepare for the worst and hope for the best I always say. The oncologist said she was confident that cancer wouldn’t be detected in Caelan’s cerebrospinal fluid (CSF) or bone marrow, but she still had to undergo further testing to be certain. I’m happy they were confident because I sure wasn’t.

Until all of these tests were completed, the course of treatment had yet to be determined concretely. I was still holding my breath on that one. The best news in the worst situation.

Thankful and grateful but still a journey ahead

I was silently thanking the universe for its mercy. I thought that treatment would be easier because we’d caught it early. If there’s one thing I’ve learned about thinking something will be easier because I think it’s less evil, it’s that I shouldn’t count my chickens too early.

I’ve found that when people hear a staging number, it seems to determine their response as a whole. The higher the stage, the more empathetic they become. In addition to that, they too sometimes think that it’s not that bad at a lower stage. I will only say this, that number is very misleading.

I’m not downplaying or upstaging any of the stages of disease, but I will say that having cancer no matter what, is still a grueling and difficult journey. I found that out as we went along. Being diagnosed with this disease at any stage, has it’s challenges.

We finally had some answers. If the ultrasound, bone marrow biopsy or CSF came back with anything, that would change everything. As such, the waiting game still wasn’t fully over.

A look into the future

Despite not having a set course of treatment, the oncologist did say that she recommended a PICC line as opposed to having a port being placed. They were confident that treatment would be of short duration and wanted to minimize scarring and avoid any more surgery. Thank goodness for that.

After all of the reading I’d done, more questions ensued. I’d read that even with a stage one diagnosis, things can still go awry. No two paths are alike and there’s no telling what you will encounter on your own journey. Pediatric cancer is still uncharted territory with far too many unknowns, and to just sit back and go along without a second thought, didn’t sit well with me.

We were at the hospital for maybe an hour tops before we got back into the car and drove home. Two hours of driving, for one hour of hospital time. I can’t complain because due to having centralized medicine, there are many, and I mean many families who have to leave their homes to seek treatment in bigger centers. It not only costs money, but they don’t have their support system there with them as well.

Afterthoughts

I remember the drive home that day. My kids were chatting and messing around like normal in the back seat while I tried to wrap my head around everything. I was grateful that we weren’t dealing with something more advanced, but at the same time I was still afraid.

All I could think about was what was about to happen. More tests, followed by treatment. Treatment wasn’t going to be a picnic either.

The questions I had then, still plague me now. How did we end up ‘lucky’ enough to catch it in the early stages? How long before it could’ve been worse? And finally, the biggest elephant in the room…

How and why did our daughter get cancer at all?