Clem and I had a moment the other evening. As he was going through the photos on his cell phone, he managed to stumble upon many that had been taken long before Caelan had cancer, back when we lived a ‘normal’ life. I can’t even begin to describe the emotions I felt as he and I reminisced over how little our girls were once upon a time ago and how peaceful life was previous to all of this.
It feels like forever ago and it’s hard to believe how much life has changed. It’s left me wondering, was our life really ‘normal’ back then? Was it ever really ‘normal’ to begin with? What is ‘normal’ anyway?
Our lives were derailed and the course of it was dictated by the very disease our daughter was stricken with, including the treatment thereof, all while being tormented by the fear of the unknown. After surviving the years of sickness that has plagued our family, we were more than ready to spread our wings and live a life bigger than we could ever have imagined and most certainly before more disease could catch up to us again. Who knew that we’d end up like this and now, it begs the question, will there ever be a return to ‘normal’ for us in the future and if so, what does that look like?
When we arrived at the pediatric oncology unit, there was a coordinator who met us and took the girls to do an activity while we met with the oncologist, Caelan’s nurse, a social worker, and of course, an intern. Now, I don’t know about you, but I prefer to be informed and I also prefer to take note of the things that I think may affect me down the road…I don’t like surprises. That said, I was told that I wasn’t allowed to take any notes in this meeting whatsoever and that they’d be provided to me because they wanted our 100% attention. Believe me, I was all eyes and ears and if taking notes, I’d be getting whomever to repeat verbatim to ensure I had it all down because this had every ounce of my attention.
Am I missing something? Why would they tell someone that they’re not allowed to take notes…is there something wrong with that? Seriously, are they that much of an ass covering bunch that they don’t want you to come back later and inquire about something they’ve said previously because you have it written down? What is it?
This bothers me and in fact, it blows my mind. Not that long ago, wasn’t the medical community wanting us to know more? Now, it appears that they don’t want you to know anything and by golly don’t question either. I don’t know about you, but the alarm bells are sure ringing.
As I had no choice in the matter, I didn’t take any notes. Do I regret that now? Yes, I do, absolutely. Especially when I received their shitty notes, after the fact.
They did provide a roadmap of the treatment protocol and the names of all of the medications they were going to use with lists of all of the potential side effects we could possibly encounter. That was fine and dandy, but I felt like I needed a little more. At that point, I wanted their information, as in what they were privy to and I wasn’t.
I was looking for a little more in regards to who possibly relapses and their thoughts as to maybe why, as well as complications in the future, especially when they mentioned Caelan had a chance of developing ALL (Acute Lymphocytic or Lymphoblastic Leukemia) how many years down the line. I think they said 9, but I have nothing to refer back to because I have no notes that contain this information. They didn’t/don’t want me looking anything up, but here I am.
Roadmaps, they aren’t just for road trips
I don’t feel like I can ask either because I think they’ve labelled me as being difficult or combative, simply because I’ve asked a handful of questions over the few months we’d been there. Talk about a situation where communication should be a priority and yet it feels too hostile for me to engage. My only hope is that Caelan continues to do well and we can eventually distance ourselves entirely.
Regardless, I can tell you that Caelan was treated using the POG 9219 roadmap (POG stands for Pediatric Oncology Group). It’s a 64 day protocol involving treatment every week for 9 weeks. So not every day, but every week for 9 weeks. You can look it up online under POG 9219 and Caelan had stage 1 ALCL in case you’re interested (this trial contained 396 children from 1992 to 1999 and not all of them had the same type of lymphoma…at the time, I didn’t find this overly reassuring).
Lymphoma can be quite aggressive and when treating it, they like to hit it hard and hit it fast…or so they said. Back when I was reading up on it, Caelan’s protocol was considered moderate chemotherapy. Her oncologists say it’s mild and I think that it doesn’t matter, it’s still chemo.
Rounds and agents…sounds like a boxing match between spies
In a nutshell, 3 of those treatment days (once every 3 weeks) were considered big rounds where everything was thrown at Caelan’s cancer (this was an all-day event). These were broken down into the first round being the induction round, which was to knock the cancer out of the park, the second round was to be sure they got it all, and the third was for insurance. Included in this, and I had no idea until Caelan was diagnosed, was intrathecal chemotherapy and if you don’t know what that is, it’s where they inject chemotherapy agents into the spine (performed like a spinal tap). More toe curling for me because Caelan had to have 5 of those…I had to double check our information because I thought it was 9 but it was not.
The chemotherapy agents used in her protocol were Cyclophosphamide, Doxorubicin, Vincristine, Prednisone and the combination within the intrathecal chemotherapy treatments were Cytarabine, Methotrexate, and Hydrocortisone. The Prednisone was given orally in the first 4 weeks with a combination of other things like PEG or Lax-A-Day, Ranitidine (Zantac) and as you will read, she ended up on antibiotics as well. She had Ondansetron for vomiting on her chemo days and for the following 3 days after.
So, some heavy hitters in the pile. Fun. Yeah. When asked about side effects, the only thing they offered was that every child is different.
And you see how many cases a year?
We did ask how many children they treated with this exact same type of cancer and they told us 1 to 2 a year. I don’t know if this is true because it’s not really a prevalent type of cancer in children. No matter, they told us that the event free survival or EFS (they usually use 5 years to figure out this percentage) for this particular type was 88%. Many other forms of lymphoma are over 90% and ALCL has a higher relapse rate than others as well.
The oncologist believed that it wouldn’t be found in Caelan’s cerebrospinal fluid, so they were confident it was localized and stage 1 at that time. They were also confident that she would be cured. All I was thinking was, it had better be after everything they were going to be throwing at it. Damn.
I get it, my kid had cancer and this was what they had to offer. The fact of the matter is this, because so few children are affected, they don’t have very many kids to try different treatment protocols on. It’s wonderful that not many kids are affected (this number is rising by the way and I think kids are more sick than ever today), but if your child is, it makes for a scary road ahead. I know that this protocol has treated more children than the original trial but if you think about it, there isn’t much in regards to long term data and those are the kinds of things that worry me now.
Nonchalance in regards to more medical intervention
We were told of the side effects and that Caelan’s immune system would take a shit kicking around a certain time shortly after each of the 3 bigger rounds of treatment, and that she’d be immunocompromised until her body began to produce neutrophils once again. Basically, she would have no immune system and any sort of virus or infection that she could possibly encounter could become life threatening. Clem and I asked if we should keep Caelan at home, away from school and the public during those times in order to avoid the possibility of picking anything up, but their answer might surprise you.
They told us not to keep her home and to send her to school and continue to live normally if she was feeling up to it, she would be our guide. They also told us that should Caelan pick anything up during this time, they would just treat it if it happened. Their attitude was very nonchalant and laid back in regards to adding more medical intervention and assured us that everything would be fine and reaffirmed to not change a thing.
I am just going to step out and say how I feel about the nonchalance of we’ll just treat it if it happens, no worries attitude. I think for someone like myself who believes that the world has become over medicalized that I am not crazy for not wanting to subject myself or my family to more treatment, if it can be avoided. Avoiding any unnecessary treatment, shouldn’t be seen as crazy, especially in regards to this particular scenario.
Be normal, be be normal
I was a little flabbergasted when I heard this come out of the oncologist’s mouth. We’ll just treat it if it happens, be normal. Yeah, be normal, what the hell is that when you’re in a situation like this? Really, I’d like to know.
The days we’d already spent in the hospital hadn’t gone unnoticed. The feelings that Caelan had were difficult and painful for us to deal with, in that she was blaming herself for being sick and causing the uprooting of our lives, especially her own. Spending more time in the hospital and undergoing more medical treatments may seem feasible for them but for us, it’s ludicrous. I can see their point of normalcy (the psychological aspect), especially when treating things for years, but for me, I can also see a point to being proactive and avoiding more hospital time and treatment if that’s even possible (as you’ll see coming up, it also didn’t make much of a difference if we’d kept Caelan at home during the times she was immunocompromised anyway, so I don’t know if there was a right or a wrong answer in our case).
Having a child go through treatment is a monster in itself and the experts have no idea of the implications of it all. I find that they fob off many things or ignore or downplay them and in turn, I found that I wouldn’t even disclose how I was really feeling out of fear of being ridiculed or having to face some other repercussion (some of us seek understanding and compassion, not pills or belittling pats on the head). This, obviously, wasn’t a conducive environment for me (I wasn’t looking for handholding either).
Say one thing, do another
Now, keep all of this in mind because once Caelan had her first round of chemotherapy, we had an interesting experience that dealt specifically with this. All I’m going to say is, if everything is true that we were told, why does it vary? Shouldn’t everyone be on the same page? This is medicine, how is it that the information we received was so different from one place to the next…actually, within the same department?
It’s great to have many opinions, but there were times that I was concerned because being read the riot act about what we needed to be responsible for and then witnessing these very same people not practice what they preach, made me wonder. I’m not sorry for saying this because I think these people are causing more damage than they care to fess up about and no one is the wiser. If they tell you that people can die from acquired infections but don’t follow the same care guidelines in regards to something such as infection control, you start to wonder.
So, the takeaway from that meeting was this, they’d treat our kid and we were to carry on as normal. Any complications that may arise, they said they’d deal with accordingly but we had to be sure that the school informed us if a student had chicken pox (I don’t know about you, but I’ve seen kids in our community get sick with much worse and this was their sole focus…also, what about that child’s privacy?). So, more medical intervention was fine for them should Caelan become ill while immunocompromised (isn’t this why some cancer patients die?) and her protocol was considered mild…to them.
I admit, there are some things I’d go back and do differently
They told us that Caelan would be fine, they’d dealt with worse things and that while Caelan may have had to have 5 rounds of intrathecal chemotherapy (which was scary to us), they had patients that had to undergo 18. They weren’t concerned about much of anything because this treatment protocol was mild and others had it much much worse. In the same breath, they told us to cancel all of our plans for the next how many months and don’t expect the roadmap to be followed to a T because there would be bumps in the road with treatments possibly being delayed due to low neutrophil counts (meaning she’d have no immune system or be immunocompromised) but be your usual selves (maintain normalcy) and send your kid to school with no special treatment.
I am ashamed to say that I did initially follow their advice and I can tell you that I do have regrets. I knew what I saw and yet I didn’t always listen to Caelan and what she needed (she was 6 years old and I’m sure had difficulty expressing/explaining how she actually felt, now that I think of it) and I can tell you that it haunts me to this day. I should’ve been able to just be a mom but when your child becomes ill, you lose that luxury entirely. They made it sound like Caelan’s cancer wasn’t such a big deal after all but warned us that it was anything from ordinary…confusing…I know.
Once we got through the whole spiel about treatment, the oncologist mentioned that we’d find that the psychological aspect of all of this would hit after we completed treatment…in her experience. I will say, that things happen before during and after and every single one of us is different. I’ll get into this as I get farther along but having my grandmother in the hospital on a ventilator at the same time, didn’t help matters for us. In addition to this, having my sister diagnosed with lung cancer only 2 months after finishing Caelan’s treatment, made our journey a very different process.
This was also the moment that we were told that Caelan was eligible for a wish. So, this gets confusing because we’re just told that things aren’t that bad and she’ll be fine but this is still life threatening and we’re going to recommend your child receive a wish for all that she will be going through. Wow, talk about 180. When Caelan was awaiting her bone marrow biopsy, we were told the same thing and when someone tells you that, you kind of feel like throwing up because that means, this is some serious life threatening shit.
Now, in Clem and my defense, we were terrified that we were going to lose our daughter, but when talking to these healthcare people, they sort of treated us like we were idiots in that Caelan wasn’t a terminal case and that we really shouldn’t be too worried. They kept telling us that she would be fine and that other kids had things much much worse. Agreed, I couldn’t imagine my child having leukemia but isn’t a child affected by any cancer at any stage still a shitty happening? They bring you in, tell you what they’re going to do to your child and what may possibly happen down the line if they survive it and then tell you she has a deadly disease and they’re recommending her to receive a wish.
So at that point, being how Clem and I are, we sort of looked at each other and agreed that perhaps the wish should go to someone who truly needed it. To which, they backpedaled and insisted that she should receive one. It’s cancer and it’s deadly after all. By that point, all I could do was just nod my head and agree…are we going up or are we going down, just how exactly am I supposed to feel right now?
The first flush
After about an hour, someone knocked on the door to say that it was time for Caelan’s PICC line to be flushed and change the Tegaderm film covering it (that happened weekly). As we walked back into the ward where our kids were, a nurse had already started the process. She had both girls sitting at a kid sized table where Lola was helping to hold the skin of Caelan’s upper arm while she peeled the film off.
Clem and I were both preparing to jump in and provide support (I couldn’t stand the ripping off of the Tegaderm film and Caelan hated it too…it was covering the stitches and her PICC line which I’m certain were also stuck to it) when we saw and heard Lola encouraging Caelan to keep going and that they were almost done. The nurse was just sitting there watching the girls quietly work and once they got to a certain point, she had them all put on a mask. Once that was done, we saw Lola take Caelan’s small hand in hers and reassure her once again that everything was going to be alright.
As I’ve mentioned before, my kids had to grow up overnight and while I resent that with all of my being, their love and support of one another is second to none. For being young, they were and are very close. They don’t want you to think that, but they are. In that moment, I got to see just how close they’d become within those very few short weeks.
The support of a sister
I’ll never forget this moment, especially when 3 other nurses stopped doing what they were doing to come and stand beside us to watch. They asked if the girls were close and all we had to offer was that they were, but this seemed to show that it was a tighter bond than we’d known about. For Lola being so grossed out by her own boogers back then, it sure didn’t show during this process.
Caelan had been exceptionally nervous about having the film changed and we were anxious because we knew there were many more to follow in the coming weeks. Watching your child go through traumatizing events is scarring, there’s just no other way to put it. All throughout the process, we’d tried to prepare both girls for what to expect and hope that by appropriately informing them, their fears and anxiety would be manageable. Attempting to arrange things in advance with staff helped but when we encountered the unwilling, the damage inflicted I’m afraid to say, may possibly be lifelong.
When we saw Lola holding her little sister’s hand and reassuring her that everything was alright and that Caelan was doing great, we stayed back so as not to disturb them. There was no crying or fighting, just the one nurse and the 2 girls working together to get everything done and over with in a calm manner. It was hard not to become involved but watching them in that moment, is something I won’t ever forget.
The road ahead
It was then that I was reassured that perhaps by bringing Lola in and allowing her to help wherever she could, might make things a little easier for both of them. As I’ve also said before, I don’t know if what we did was right, but in that time, it felt like it was. We were all on the exact same page and I think that made things run a bit smoother throughout this entire experience, due to having that feeling of understanding alone.
Once the girls were finished, the clock told us that the choir performance was off the table. They were upset, but we treated them to take out on the way home to make up for it (yeah, take out is a huge treat, ha!). It had been a very long day and we were all tired and ready for the comfort of our own home.
Clem and I needed to decompress and discuss how life was going to look in the months to come. No matter how many times we were told to maintain normalcy that day, cancer and its treatment just didn’t fit into the normal life we were accustomed. Predictable working hours, normal school days, upcoming swimming lessons, camping trips, and whatever other regular activities the past had afforded us, were all going to be cancelled or put on hold in the following days for an undetermined amount of time.
Normal. Huh. What the hell is normal?