Chemotherapy Round 0.5: Because Life Doesn’t Always Follow ‘The Plan’

Hello 🙂 ! I feel like it’s been forever ago since I last had the opportunity to read or write anything, but this will be short lived. Clem and I have been working hard to get all of our ducks in a row before we move and I look forward to being able to get back into the swing of things very soon.

In the meantime, I had been working on this post but had some technical difficulties (to say the least) and ended up having to re-write most of the bloody thing. Needless to say, I had a little pout-fest and had to walk away before subjecting my computer to the sledge hammer treatment…yeah, I was a little mad…just a little. Anyway, here is a continuation of Caelan’s story 🙂 .

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Trying to continue each day as if nothing life altering had landed smack dab in the middle of our life was ridiculous and impossible to execute. The waiting, by far, was the worst part of it because we never knew when another twist or turn might be coming. I shouldn’t say that, we expected calls for things that we knew were on the horizon but what we didn’t know was how or exactly when it was all going to pan out. That’s a huge anxiety and fear fluffer right there…no rhyme, reason, or control over your own damn life and being at the mercy of other’s schedules…fun…right?

We were told to expect a call in the coming days to start chemotherapy…what day…we had no idea…but it was happening…soon. Caelan had to be admitted so that they could keep an eye on her to ensure nothing bad would happen. A night or 2 at the most was what we were told and Clem and I prepared the girls for the upcoming event that was about to happen.

We were met with revolt…of course, and honestly, we couldn’t blame them. I believe the girls’ protest mainly focused on haven’t we been at the hospital enough over the past few weeks? Don’t they know we’re kids who like to play outside with our friends? They know we’re kids, right?

Luck favors the prepared, but how the hell do you prepare for the unknown?

I felt for them. They knew that there would be a phone call coming, and they waited for it just as anxiously. Distraction never worked on them, so this part was a bit trying for all of us. Just a heads up…kids aren’t stupid.

Caelan had the same teacher Lola had when she was in grade 1, and since my involvement with the school started when Lola began kindergarten, I got to know some of the staff over that period of time. When word got out that it was even remotely suspected that Caelan had cancer, the school had already begun to rally. During that time, I also began to realize that having a child with cancer, also came with a certain form of attention that perhaps we really weren’t prepared for.

Seriously though…how the hell do you really prepare for something like this? As I’ve said before, there are no manuals and there really isn’t much by way of information out there for people to refer to. On top of that, I think many of us slink back into the shadows and sort of hide after the fact, unwilling to share in our experiences. For me, I don’t want to be picked apart and harshly judged by others, but at the same time, I feel like some of the things we experienced and felt need to be shared whether people want to hear it or not.

Drastic changes brought to you by pivotal moments

This was far beyond any pivotal moment I’d ever experienced in my life. The array of thoughts, feelings and realizations were unbelievable and the changes I’ve experienced in myself have been drastic. I truly am not the same person I once was. In fact, I don’t even recognize myself.

Am I better for it? I truly hope so, but sharing these things isn’t easy for me and I’m sure may not be the same for the others who’ve also experienced the life altering events I write about. And, that’s okay, we’re all different and our interpretations will most certainly vary…that’s the beauty of human beings, we’re all unique.

The very first thing that I recall that alerted me to the school’s knowledge of what was going on, was shortly after Caelan had her surgical biopsy. A card was sent home with Lola a day or so after, and with it, a little stuffed animal that was the symbol of the school’s mascot. The girls were touched by the act and knew they had support at school and all I can say is this, thank goodness for community.

Grade one teachers and their aides have superpowers

The grade one teacher the girls shared, Jan, is honestly quite the lady. After spending all day in the hospital on the Monday, I was apprehensive about sending Caelan back to school the next day. She’d had the PICC line placed on the Friday and I was still afraid of the damned thing and all of the horror stories we’d dreamt up after being read the riot act about caring for it. That wasn’t necessarily a bad thing, as I’d seen another PICC line dangling from a child’s arm that appeared to be neglected, while walking in the hospital one day…good thing that child wasn’t a cancer patient was all I could think.

Caelan simply wanted to go to school and have a normal day like any other normal kid. As we’d been told to maintain as much normalcy as possible, we prepared everything that she could possibly need and I sent her and Lola out the door that Tuesday morning. I can’t remember exactly what happened with Caelan’s teacher but I think Clem spoke to her about the new hardware after she got done hugging the daylights out of our daughters.

If I can just say it, this particular teacher and her aide were amazing throughout the whole entire ordeal and I can’t imagine how we would’ve done it without them. They were both fully on board with helping to provide that normalcy at school while being there in every possible way for both of our daughters (and Clem and I). If you don’t think that’s going above and beyond, wait until I tell you about what this particular teacher and 2 of her colleagues did to support our kids, shortly after all of this.

PICC lines and playgrounds, take 1

Clem had let Jan and her trusty sidekick (her aide Misty) know that Caelan had a kit of sorts in her backpack containing clips and ports and the like should something happen with the PICC line. At that point, I think we’d managed to get a few pairs of the footless tights which helped to keep everything snug to Caelan’s arm and safe. I admit, I was still a bit squeamish but Jan and Misty just stepped on up and said they had absolutely no problem with making sure Caelan was safe. They assured us that if anything should happen, 911 was the first call and we were the second.

I hadn’t expected anyone to step up to ensure Caelan’s needs, that responsibility was on us, but it was greatly appreciated that we had people who weren’t afraid to take on roles that were out of the ordinary, allowing Caelan to be normal. Once Clem had gone through all of the instructions we’d been given, Jan ushered Caelan into class and started off another normal day in grade one. I think Clem and I were both a little nervous about sending her but we were happy for her have a usual day, like any other, before treatment began.

We were on pins and needles over the next couple of days while waiting for the call. Each day after school, or any time the phone rang, both girls would come running or ask if we’d received the call yet. On the Thursday, right as I was leaving to pick the girls up from school, Caelan’s nurse called…it was the call we’d been waiting for.

The call

The bone marrow biopsy was clear, so stage 1 it still was and she said that we’d be receiving another call shortly to check into the hospital to start chemotherapy within the next few hours to a few days. Yeah, she was a little vague. She had no other information just that we were good to go and that things would be happening soon. I was nervous about telling the girls, and at the same time, happy to just get it all started so it would all be over sooner.

When I finally picked the girls up, I let Jan know that we’d be called any time to start treatment. She’d hoped that Caelan would be able to make the field trip the next day and secretly, so did I. Once home, I called Clem, and as he’s very proactive, he decided to call our nurse back to see if they had any idea of a timeline.

Within an hour of the first call, the ball that had started rolling, had already rolled several times. Clem called me back to say that he had spoken to our nurse and that they had a bed available. She said to expect a call from the unit shortly, to come in that evening, so that we could begin chemo the next morning. Another one of those floor falling out beneath me moments…why, I don’t know.

Making promises that we couldn’t promise

Also, the reason for admission the night before was because they didn’t want to lose the bed. Yes, it’s true, the hospital here runs at full capacity every usual day and you have to take beds when you can get them. Even in the pediatric oncology ward, if you can imagine it.

I told the girls that Caelan would be going into the hospital that evening and we needed to get her packed. The disappointment I immediately faced, was quickly drown out by the quiet fear that fell over them. Caelan’s small face fell and she again asked how long she’d have to be there. I felt horrible for her, she’d had 2 normal days and seemed to be thriving within them.

I said that she’d be there 2 nights’ tops and that her subsequent rounds wouldn’t require her to stay in the hospital. She took a moment to digest this before going into her room to pack. Lola was on her heels, right behind her. She wasn’t faring any better with the news but I assured her that we’d be there early the following morning.

Packing for chemo…is there a tutorial for that?

I helped Caelan pack a bag with anything and everything I could think of that’d she’d need. It felt similar to the days of packing my bag for labor and delivery except that this time, it wasn’t for me and it wasn’t for anything joyous. I felt frantic and jittery as I tried to focus on what she might need.

As I’d had no idea what to expect, I really had no idea what to pack. At least there were books about labor and delivery that gave me an idea or a list of ideas as to what to bring to the hospital, but there wasn’t any such thing for chemotherapy in regards to a child. I got Caelan to focus on the things she’d felt that she’d wanted and needed while being cooped up, while I tried to wrap my head around the basic chemo necessities.

I wondered, was she going to feel well enough to walk around the ward and do some of the activities provided or was she going to be bedridden? Was she going to be violently ill…was she one of the ones who possibly died on induction? I had no idea…the thoughts that swirled around in my mind contained a vast assortment of good and bad outcomes with no clue as to what we were actually going to experience. We were told chemotherapy experiences vary from child to child which left me with far too many ideas as to what to expect.

Fear, fear, and more fear, I despise it

It didn’t help that we’d heard about a child in the U.S. who had died a few days previously, due to being induced with (I can’t remember exact details, but I think it was something like) 100 times the amount of chemotherapy he needed. We understand that mistakes happen, but it still scares the shit out of you when you hear something like that. I’m sorry, but I worry about that shit because for some stupid reason I seem to be one of those people who often manages to be the bloody rarity…needless to say, I’m pretty fucking cautious.

All I can say is, you don’t know until you know and everyone is different. I know firsthand that this doesn’t help with the fear and uncertainty. So, this is a huge part of why I write. This is our story and what we experienced and I wish I would’ve had someone else’s story to read beforehand because I was completely clueless when it came to cancer and its treatment…honest truth.

Anyway, I did the best that I could with packing and knew that if Caelan needed anything, I’d be heading in the next morning and could bring whatever she felt she needed. It was only going to be for 2 nights they’d said, so she didn’t need a ton…oh yeah…famous last words actually. Once I was certain that I’d had everything packed, Clem appeared at the door, and a new line of chaos ensued. I’d written about a small portion of this next moment, back in December, and it was at this point where that story took place.

Vital relationships

Once Clem was packed up and ready to go, we all gathered at the front door of our home. Our kids, at the end of the day, are simply that. Just your regular run of the mill kids who also happen to be sisters. They’re not geniuses or super heroes with superpowers, they’re just the very same as your own children or the children you’ve come in contact with.

We’d gathered to say see you tomorrow (I hate saying goodbye…I don’t like the finality and feel better having hope that there’s a future meeting somewhere down the road…I know…you probably think this is pretty stupid but it’s just how I am). In saying everything previously, my kids would fight and beat on each other and stuff, but in this moment, you couldn’t pry them apart. Were they sick? Well…one was.

Clem and I were having a hard time too. Our little family is close. Clem and I have rarely been apart since we’ve been married and during this time, he and I were like oxygen for one another. Having him home at night to rationalize the irrational thoughts that I’d managed to think up during the day, was crucial to my very own existence and sanity. Our relationship was vital for our survival.

A see you tomorrow moment that I won’t ever forget

I feel like the phone just isn’t the same. Human contact, especially during times like these, is necessary in my book. I don’t know if I’ve said this before, but I wouldn’t have survived if it weren’t for Clem.

As Clem and I had finished unloading everything we felt one another needed to know, we watched our girls struggle to separate from one another. They just kept saying that they loved one another and that they’d see each other in the morning. Clem and I barely got to squeeze each of them before he ushered Caelan out the door.

It was sudden, and I’ll never forget the eerie feeling that washed over our home once that door closed. My house fell silent in a way that I cannot even describe. Everything just changed.

Feelings I’d never felt and sounds I’d never heard

It almost felt like Clem and Caelan had left and were never coming back (which wasn’t true) and that there was a permanent change. I could definitely feel a sort of loss as well. Now, in hindsight, I realize that the loss I’d felt was the loss of the old life we’d once lived. It officially died that day.

It was like reality just kept slapping us in the face and reminding us that Caelan had cancer and life as we knew it was never going to be the same. As Lola stood mutely looking out the frosted glass insert of the door, I noticed that the house made noises that I’d never noticed nor heard before because the sounds of life being lived had drowned it out over all these years. Life…is definitely a sound, and I think it’s one of the sweetest sounds on this crazy planet, if not one of the most beautiful. On top of that, I also discovered that silence, also has a peculiar sound.

For me, it has an odd hum or ring to it, if you will. The feeling that accompanies this sound, is like some unnatural sort of full body vibration and no matter how I’d move to try and shake it, it’d remain. Maybe I was just feeling stunned but the entire time that Caelan and Clem were gone, this feeling and sound were very present.

Keeping occupied

It took a few moments before I engaged Lola. I tried to reassure her that Caelan and Clem would be alright and that we’d see them soon. The first thing that fell out of Lola’s mouth was how strange everything felt. So…I wasn’t in some bizarre dreamlike state after all.

Once we snapped out of it, I remember trying to keep Lola and I busy because nothing felt right and any time we’d stop, we’d notice the odd feelings and mention it immediately. It’s hard to even be motivated to do anything when your mind is solely focused on one thing. I really struggled with this and I still do some days.

I’d decided to prepare for the next day and set Lola off to gather a few items to keep ourselves busy. Before we knew it, it was time for bed. I didn’t feel tired (who am I kidding…I was exhausted but for some reason I just didn’t feel it), but the clock told me it was that time. Despite being exhausted, I couldn’t sleep and this pretty much sums up how I lived during that time and that’s probably why I still feel exhausted most days…the ol’ mind and body is still making me pay my dues apparently.

Another sleepless night in the books

I remember the last phone call Clem and I had before turning in that night. He and I were both worried about how everything was going to go. Usually, Clem is the assured one, with a positive outlook, but even he was feeling fearful and considering all of the terrifying unknowns. As I’ve said before, as much as we didn’t want to go through any of this, life was dragging us through it regardless.

Another sleepless night was followed by another alarm turned off before it could even alert me that next morning. I got Lola up and mobile and before we knew it, we were off to the hospital. As I’d called Clem first thing, he informed me that they would be starting a 10:30. Lola and I were out the door early, but traffic ended up delaying us and we didn’t hit the hospital until 10:15.

Of course, as luck would have it, they were early…which never happens by the way…like ever. Clem called just before they took Caelan in for her first round of intrathecal chemo and all we could do was wish her luck. I made sure that she knew I loved her and that we were already in the hospital and would be waiting for her when she was finished. I felt like the world’s shittiest mom…fucking traffic.

This wasn’t how I’d imagined it

By the time we got to the ward, Clem was already back to meet us. When I asked why he wasn’t with our daughter, he laughed and said that she was already in with the doctor. I admit, I panicked a little. I was terrified after reading about all of the horrible things that could go wrong (the information was provided during the treatment meeting we’d had) and I was sad that I didn’t get there in time to see her off.

Since the only thing we could do was wait, Clem, Lola and I settled into the common area of the ward. I will never forget the moment when I finally looked up and around at all of the other families who were dealing with many of the same things we were. It was a life changing moment, seeing the kids with their families or family member. It solidified the reality of this disease and drove home the fact that our child had joined their ranks.

Our asses had literally and just barely touched the chairs beneath us when the doctor who’d done the procedure (the intrathecal chemo), breezed through the ward and nearly flew past us before coming to a screeching halt. She quickly acknowledged us and enthusiastically said everything went well before heading off in another direction. I was stunned because it was merely just a few moments ago when they took her and now they were already on their way back.

Yeah, I have a sense of humor that may not be appropriate

I know what you’re thinking, I’m a little fucked up, but my thoughts immediately went to…you’re a little too cheery for someone who just stuck my daughter in the spine with a pointy object and injected her spinal column and brain full of chemical. Yeah, I admit, my mind sometimes goes there. Hey, yours would too by that point in the game…no lie…dark humor comes with the territory for sure!

Not even a minute or so later, Caelan was rolled back into the unit. I ‘m not certain as to what exactly I thought she’d be, but I was pleasantly surprised to see her huge smile when I walked over to see her. I took a moment to survey the damage, but before I’d reached my conclusion, she asked me where her breakfast was.

Yeah, that’s my kid alright. I figured that if she was smiling and asking for breakfast, that she was probably alright, even though I was constantly asking her how she felt. Once we got her parked back in her room, she ripped into her breakfast tray that had been sitting there waiting for her and began to devour whatever suited her fancy.

Does this look infected to you?

I haven’t mentioned this as of yet, but Caelan’s surgical biopsy site hadn’t been looking stellar in the healing department. What’s interesting is that the site had visibly sunk (it no longer looked like a lump so to speak) after the surgery, but had puffed back up not long after. The area was red and didn’t appear to be on the mend as it should have and we wondered if it had become infected. Truth be told, we saw a pocket underneath and it appeared to contain some fluid or pus.

As Caelan absolutely did not want to see the huge scar that remained, we’d had a light gauze pad placed over it while she was at school and had kept it clean and dry the entire time. We were diligent about keeping it infection free, but when your immune system is busy dealing with cancer, things apparently don’t heal as they usually do. Don’t get me wrong, it had healed but it still looked red and angry so to speak.

As Caelan cleaned up her breakfast with Lola perched beside her, a gaggle of people appeared and knocked on the door. My apologies, I don’t know exactly what the correct term would be to sum up a group of doctors, and gaggle just sort of popped into my mind. Anyway, once this gaggle or group appeared, it was a sign that show time was about to commence.

Hello, my name is…

Clem and I watched as they filed into the room and waited for their appointed leader to introduce himself and the rest of the team. He was a shorter man, older than Clem and I by probably 10 or so plus years, soft spoken and if I must say, openly wore his heart on his sleeve. He’s one of those people that you can immediately tell that is genuine and truly does care about the young patients he seeks to heal. I cannot say that for all of the pediatric oncologists that I’ve met, but this one, is definitely a human being with honest intentions and strives to do better.

He explained that it was go time and that Caelan needed hydration before and after the big chemo rounds, which most certainly added more time to those treatment days. They do this to help flush out the toxic chemicals they were about to infuse into my child’s body. They’d started earlier that morning, 2 hours before which would be followed by 2 hours after chemo had been administered. Once the doctor finished up his explanations and asked if we’d had any questions, we pointed out Caelan’s surgical site.

Oddly enough, no one had checked it. We’d asked about it and showed it, but hadn’t received an answer as to if it was healing appropriately or not. Clem and I knew that starting chemo with a possibly infected surgical site was asking for trouble, so we made damn sure someone was actually going to check it before going ahead. Not surprisingly, once we mentioned it and the doctor finally looked at it, chemo got sidelined until they determined it was safe to do so.

Enter the surgeon

The next step entailed a visit from the quirky surgeon who did the surgery. However, before he got to us, he had one of his residents pop in first. It was the same one who’d removed Caelan’s stitches. She remembered Caelan and agreed that there was possibly an infection and let the surgeon know.

We figured we’d be sitting for a few hours and waiting (not sure if he’s retired now, but he’s probably one of the best we could’ve ever hoped for which means, he’s a very busy guy), but he appeared in Caelan’s room a few short minutes later. As a matter of fact, he arrived just as a wheelchair entered the room to take Caelan down for an ultrasound of the biopsy site. Apparently, they were looking for fluid (pus) and to be sure they were going to use an ultrasound to determine this.

What’s interesting is, not even a few seconds after looking and feeling the red and swollen wound, the surgeon waved the lady with the wheelchair off saying he didn’t need an ultrasound. He said that he thought there was fluid under the site and that it might be infected, so he was going to try and drain some fluid from Caelan’s neck to sample (he felt that the fluid was sterile but wanted to make sure before we proceeded with chemo). The lady obliged and he turned to us and said that Caelan was a strong kid and that he had no doubt that she’d be able to handle him sticking a needle into the site, no problem and without any sedation.

Respect

I looked at him like he was nuts, but he reaffirmed that she was tough and could totally do this (is this my kid or your kid? LOL!). He also asked that she not eat or drink anything in case he needed to go back to the OR and open the site back up to scrape and disinfect it…ewww…toe curler there, am I right? He said that he didn’t want to do that but wanted to be prepared, just in case. At least he acknowledged everything she’d gone through up until that point and didn’t want to add any more than he had to, thank goodness for that.

I know that I’ve literally shit on a few people in healthcare that I’ve come across over the years because of their lack of compassion and humanity, but I’d be an idiot to not acknowledge that there are some that we’ve crossed paths with that were nothing short of amazing. Yes, our surgeon was quirky, no insult intended, and I wonder if that possibly describes some of them (I don’t know any personally) because you have to admit, you have to be a little different (actually, maybe, a little fucked up) to do this job. That said, I have an immense amount of respect for this man and for him to be aware and understand Caelan in the short amount of time he’d been around her, speaks volumes about his character.

He asked a nurse to gently smear a bunch of Maxilene cream on her neck over the biopsy site, ordered up some Morphine and said he’d be back in an hour to take a sample. I was nervous but I too knew that Caelan was strong and was more than willing to work with whomever she had to to get through this. At this point, I didn’t want her to have to endure more procedures and at least we knew that the surgeon felt the same.

Our surgeon, the cheerleader

I had to laugh though, he kept telling everyone that waked into the room (and there were a few because they really hustled for this guy) that Caelan could handle anything and everything and kept saying she was an amazing girl. He carried on like he was Caelan’s biggest fan, almost to the point of being a cheerleader. Kind of funny in hindsight because I thought he was completely full of shit and just playing my kid up, but after witnessing some of the children going through these shitty things…I often wonder if he was truly being sincere.

An hour later, as promised, he reappeared and was ready to roll. I felt it best to take Lola for a walk so she wouldn’t have to see what he was about to do, and honestly, it made my toes curl just thinking about it. Clem stayed and the surgeon said he’d only be a few minutes, so off Lola and I went.

We decided to take a walk out of the unit and up the hall, which wasn’t very far away. I figured we’d probably be done walking and on our way back in 5 minutes, so I scouted out a seating area just outside the unit where we could wait for Clem to call when everything was done. I shit you not, we were only gone for maybe 5 minutes and were already on our way back when I spotted the surgeon, talking on his phone while walking like a man on a mission in the hallway and away from the oncology unit.

An intense interaction if I must say

I figured that he had either finished with Caelan or maybe there were complications…I didn’t know, but I kept my head down and continued walking toward the little seating area I’d spied earlier. Just as I saw him, he saw me and made a beeline directly toward us. I was a little freaked because my first inclination was to immediately think that something was wrong (I honestly couldn’t get a solid read on him), but he walked right up to us and stopped us in our path.

He pulled the phone away from his ear and told me that Caelan was good to go and yet again, reiterated how amazing she was. By the time he’d finished, I’d settled from my brief moment of panic and thanked him again for everything he’d done and expressed my appreciation for letting me know everything went well. Before I knew it, he had the phone back up to his ear and had swiftly continued on his way.

Lola and I skipped over the seating area and went straight back to Caelan’s room. Her wide, radiant smile was the first thing I saw and her cheery little voice asked where we’d gone and what took us so long. She was sitting on her bed, playing a board game with Clem, and now sported a gauze pad covering her war wound. She was happy the surgeon was done and gone and all I remember thinking is, this kid is a helluva lot more resilient than I am and far beyond stoic for her age.

I wonder if watching cultures grow in petri dishes is like watching paint dry?

Clem told me that they were taking the sample to the lab to see if anything would grow from it and all we could do now was wait. The thought of Caelan possibly having to undergo yet another surgery made my stomach churn. I hoped the surgeon was right and that the fluid was sterile, but you just never know.

While both girls were sitting on Caelan’s bed playing board games, I decided text an update to the few people I’d been keeping in the loop. This had become a ritual with each new step and event in Caelan’s journey, and often helped to pass the time while waiting. While waiting for the replies to roll in, my mind decided to wander off on a tangent all its own.

I’m sure you’ll never see me the same way again after reading this, but what else was I going to do to pass the time and keep sane. I was sick and tired of thinking about nothing else but death, death death and cancer, cancer, cancer (and believe me when I say, I had an immense amount of time to research this cancer shit while waiting or sitting and watching my child suffer from the side effects of the chemotherapy she’d received). In that moment, I wondered if the sample they took was subjected to inspiring music to help get it growing, or if they took turns yelling at it and insulting it with your mama jokes. I love those by the way, especially when Lola spits them at me as of late…yeah…I’m a little different…and now I wonder which method grows the best sample…