Hello again! Thank you so much for your patience over these past few months…it is months now I think…isn’t it? Moving day is close and I think Clem and I have finally reached the point where we cannot pack too much more before we’re having to eat off of bits of packing paper and sleep in bubble wrap :). On a positive note, Clem and I seem to be getting along fairly well and I’ve only had few pissy moments of contemplation about whether packing tape can be used to aid in the ‘settling’ of ‘marriage improvement moments’ whilst packing (I’m adding packing and moving to our ‘marriage building and strengthening repertoire’, which, if you’ve read before, includes backing up the holiday trailer…ahhh…marriage).
I am looking forward to being able to read and write again with some sort of normalcy very soon. I admit, it’s been quite a process, and one that I look forward to sharing (Such as, I feel like I’ve been living in an episode of Hoarders, sans shitting in the kitchen pots and pans and sleeping in the bathroom…I feel for these people and may actually have a bit of an understanding after all of this and I might just write about it eventually). In the meantime, I managed to get through the last of the journal that I’d kept when Caelan was going through treatment, and luckily, Clem also has one that he kept that has kicked my memory into gear.
Looking back at the journals hasn’t been easy and all I can say is that, in addition to our move, I’ve been having to deal with a few of the things that I may have fobbed off or blatantly denied, in addition to acknowledging that I simply hadn’t dealt with some of the things I thought I had. Who knew that the monsters that I’d thought I’d dealt with for good would come back to haunt me now. I thought I’d dealt with a lot of this shit prior to, but I guess that wasn’t the case. It’s been humbling and at times, has helped me realize that the validation that I’ve been searching for with all of the decisions we’ve recently made, has been with me all along…with that, here’s more of Caelan’s story…
I have no idea how much time had elapsed because we had taken a few walks and played a few board games, and before we knew it, word arrived that nothing had grown from the sample taken. We were happy and relieved to hear that Caelan didn’t have to be on surgical stand by any longer, another crisis averted. All that said, she had 36 hours of antibiotics before chemo could resume on Sunday, and the swelling of the surgical area that’d we’d witnessed over the past few weeks, was all tumor growth.
Remember what I had promised to my kids about only being in the hospital for 2 nights? Well, Mommy was a liar apparently. This was Friday, and Caelan and Clem wouldn’t be released until Monday.
As many of us can attest, life has a habit of not following the best laid plans. In fact, I now plan that any and all plans that I make, will not follow the best case scenario…like ever. If plans go better or maybe come close to following the best case scenario, I silently thank my lucky stars because I know that this is usually the exception and not the rule. Brace for any and all, is usually the motto.
The world of pediatric cancer
We were told that Caelan could get a day pass for Saturday, but had to be back every 6 hours for her antibiotics. Considering 2 of those 6 hours would be spent on the road, we decided it was a waste of time and energy, so Caelan and Clem just stayed put. As much as that sucked, we’d felt it was better to conserve our energy whenever we could.
Due to this reasoning, spending time within the walls of the pediatric oncology unit, opened our eyes to the reality and world of pediatric cancer. As I’ve said before, this is a small group. Not many children and their families have ventured down this path and that makes it unique, and I’m also going to say mysterious. In regards to myself, if I may say…I’m most often misunderstood.
Again, I cannot speak for anyone other than myself and I have no idea if anyone feels or thinks the same way that I do, especially after experiencing the things we have. As I’ve also said before, I cannot imagine if my child had been diagnosed at a later stage or had been terminal, my mind often resided there (in reality, anything can happen), but I couldn’t even fathom. When I saw other families who had been dealing with those situations, my heart broke for them, and it still does. I don’t give a shit what anyone says, no child should have to deal with illnesses such as these, NONE.
I’m sorry, but cancer isn’t and shouldn’t be considered normal
Yes, kids get sick (I’m talking about the usual illnesses in childhood like the common cold…not cancer), it’s part of growing into normal and healthy human beings, but this, this is fucking disgusting. Yes, I’m going there. Honestly, no one should be going through any sort of chronic or terminal illness at this stage in our civilization, and yet, I don’t think humans have ever been more sick. I’m not going to apologize for saying this, but what the fuck?
Yup, this needs to be said, and we’re not saying it (or we’re just accepting the bullshit because it’s let’s say easier, and that’s not better by the way, no siree) and I’ve been holding back because of fear, but I’m done with that. I’m pissed off and I’m fed up. All I will say right now at this point in Caelan’s story is that many of the answers I seek, are simply not there (surprise, surprise) or, the ones that I have read or heard about on the varying subjects within the realm of modern medicine, are a bunch of complete and utter bullshit that’s strewn all over the bloody place with no rhyme nor reason, subject to change at a moment’s notice in regards to who wants to line their deep and endless pockets more.
All I’m going to say is this, smart, driven people who want to do better, do way more than just ask vague questions on questionnaires and turn around and formulate answers based on a handful of other human being’s vague responses (without any scientific investigation whatsoever) that have absolutely zero depth in regards to the subject at hand (in case you’re wondering, we did a questionnaire on intake, and apparently the vague piece of shit gave certain researchers so much insight that they conclusively drew 100% bullshit conclusions in regards to pediatric cancer that I’ve read studies about and I can tell you that it’s complete bullshit with zero scientific merrit). No, it’s not that easy and these are not answers, go back to the drawing board (I can’t believe we call some of this bullshit science. Studies? Papers where someone has read and combined a bunch of other studies to make it appear that they’ve done yet another fucking study that says exactly the same stupid thing? Pffft, you’ve gotta be fucking kidding me.). Unreal…you can bloody well guarantee that there will be more rants on this topic as I go, that’s a given. Our children (at the very least) deserve better and I’m not apologizing for asking questions anymore…I’m done with that load of bullshit.
It’s truly the people you meet that make all the difference
Clem had been in the hospital just one night and had already started to talk to 2 other families whose children were there being treated. Yup, you bet your ass I’m going to tell you about them because no one else will. That’s a tragedy because if people knew the stories and saw what these children were going through, I’d guaran-damn-tee there’d be a lot more happening in the world in regards to striving for better, and if not, what the fuck is wrong with people? I’m sad that my kid had to go through this shit, but watching a baby have to go through it, is beyond a piss off.
I’ll start with Caelan’s roommate, Rebecca. At the time, she was 15 years old and had been diagnosed with leukemia (5 months earlier). Rebecca was still in the hospital…yes, for the entire 5 months, because her ‘counts’ as we call them (neutrophils, a type of white blood cells that are involved with the immune system and no neutrophils basically means you’re immunocompromised…you need this to survive out in the big wide world and if you don’t have this, the common cold or a simple infection could kill you and FYI chemo kills these cells), hadn’t come back up since she had been treated. She had beat her leukemia, but her body hadn’t recovered enough for her to go home.
So, a teenager who was in the hospital for 5 months awaiting her counts to rebound, and that was young human being number one that we’d begun to get to know. Small, beautiful child number 2 was a little girl named Charlotte. Charlotte, back then, was a toddler, not even 2 years old (to me, that’s still a baby) when we met her. If you want to discuss that word I so vehemently despise called rare, she is in fact, definitely the definition of that. Why?
These people will change your life
Well, little Charlotte had been diagnosed with a tumor that less than 10 children in all of Canada had been diagnosed with, within the last 25 years. That, my friends, is rare. She’d beat her cancer, but had to continue being treated every 2 weeks with a chemotherapy regimen (each treatment taking around 24 hours to complete), just to keep it at bay (I can’t remember how long she had to do this, but she was there before and was still there, after Caelan was given the all clear).
You want to talk about tough little human beings who’ve been handed a bucket of shit for life at such a young age, this amazing little girl, is one of them (I haven’t even mentioned the little boy who was 3 or 4-ish years old that we got used to seeing, who sped around on a small balance bike in the ward while wearing various superhero costumes who sadly passed away just a few years ago…or the teenager who died just a week or so before we entered the hospital). Not to mention, her young parents. Oh, and you should also know, that because she was in diapers, they had to constantly keep gloving up and changing them because the chemicals they use to treat these diseases (chemotherapy) are extremely…caustic…if I can use this term…and allowing it to have contact with the skin causes horrible chemical burns that can cause some serious damage. The things we don’t consider when a very young child has to go through something like this, blows my mind.
So, never heard of them you say? No, you probably have not. But now you have, and I can guarantee that if you walked into any children’s hospital or hospital where a child is being treated, you will find more than one who will steal your heart and make you vow to be a better human being. That, is something I can guarantee and if you don’t feel this way, I have lost hope in humanity.
Every journey is unique
So, these amazing children and their families, befriended Clem and Caelan, and have become a part of the reason why we have completely changed many of the facets within our lives. I’m not kidding you when I say, strength comes in many forms, and sometimes, in the smallest of packages. I will never forget these children and their families, NEVER.
After digesting the most recent news, we began to settle into the new path that lie ahead. There wasn’t a thing we could do to change it and knew we had to roll with the punches to merely try and get through it. Once we began to talk to the families that were there, we realized that every child had a different story and experience, and that ours would certainly be no different. Who knew what would or could happen next…total crapshoot in my opinion.
After spending the day together, Lola and I went back home to our empty and oddly silent house. It didn’t feel like home, more like a headquarters for refueling and restocking. I touched base with my folks who were set to make the journey to us and before we knew it, it was time for another sleepless night.
Time is the ultimate gift
Lola and I took our time the next day and arrived at the hospital after lunch. We weren’t missed because Caelan had had some visitors already that morning. Her grade one teacher, Jan, stopped by for over an hour and brought her a game and some other comfort items, followed by friends of ours named Lloyd, and his daughter, Sierra. Not long after we got there, Caelan’s best friend Shayla and her mom, Mel, arrived.
Having company helped Caelan immensely. As I’ve said before, time is the most amazing gift you can give and receive. I have yet to find a way to extend my gratitude for this truly remarkable gift and the only thing I feel that comes close to even remotely extending this, is to pay it forward in kind. Especially, when it comes to others.
There’s a moment that immediately comes to mind during Caelan’s visit with Shayla and Mel that I can’t seem to shake, even after 5 years. As this wing of the hospital often hosts children for extended lengths of time, there’s an assortment of toys available to aid in passing it. This includes tricycles and other ride-on toys to be ridden within the hallways of the ward and the kids pretty much get to do whatever they want really, and no one says anything otherwise.
I remember Clem and Mel chatting while I stood and watched Caelan and Shayla ripping up and down the hallway on 2 of the ride-on toys, laughing it up while racing one another. As I stood watching, I worried about what the next day had in store for us. First round of chemotherapy, aside from the intrathecal one she’d already had, was less than a day away.
In the moment, my daughter appeared to be just a normal kid, and she was, but I also acknowledged that she wasn’t. I understand that life is full of unknowns, just like any other day, but those days just weren’t the same. I can recall some of the moments that became overrun with the ‘what if ‘ reel and this was one of those times.
I don’t know if it was the look in my eyes or the smile that never reached my face that caught the attention of the doctor who was in charge that weekend. I wrote about him in my last post, but before I knew it, he’d appeared from who the hell knows where and was standing next to me. He was watching my daughter be a menace in the hallway, quietly chuckling at her smack talk and silly shenanigans. He broke the silence by saying,
She’s going to be okay.
It’s truly a simple question, do we really know?
I remember snapping out of it and finally turning to face him. As I’d said before, Clem and I felt like he was the best oncologist out of the lot, and certainly felt much more humanlike and compassionate. He gave me a look of reassurance before resuming his indulgence in happily watching the 2 girls play. After a few minutes of watching and trading a few funny comments with a couple of the nurses who’d been watching from behind the main desk, he was off and back at work.
Was it reassuring? Maybe. A little, perhaps.
My mind begged the question, if each child and their experience are unique, how do we really know that everything will be fine? I, for one, am never that confident. Even if I’d done something the same way many times over, there have always been instances (especially when I attempt to craft things, ha!) when I run into a reoccurring or sometimes a new or unforeseen issue, often unexpectedly and of course at inopportune times. We are human, are we not?
Seriously, am I the only one asking these things?
This is really no different in my mind, especially since we were told that they maybe see 1 or 2 cases of this type of NHL a year at this hospital. As I said before, things happen, we’re all human. At a time like this, I have to tell you, you can only wish and hope that things go exactly and perfectly as planned, but even then, that’s not reality. Were we going to become yet another rare statistic that no ever hears about should things go not exactly as planned or expected?
It had already happened to us once, what’s to stop that same fate from happening again? Yes, many may think I overthink things, but really, shouldn’t we consider that these are very real possibilities? It does happen and it had just happened to us. Although this may not happen all of the time, denying that it never happens, seems a little negligent and ignorant to me, especially when something like this is happening to my own child…I think that would be a normal thought and worry for a parent such as myself, would it not?
While all of this was happening, if you’ve read before, my grandmother was still in the hospital after falling ill with pneumonia and had been in the ICU on a ventilator. Now, I’d like to say that I remember everything and in intricate detail, but the truth is, I’m human and only remember bits and pieces here and there. I know that my grandmother was still in the hospital, but I can’t remember if she was fully off of the ventilator at this time. She’d been on it and gotten off, only to end up back on it due to a lack of care from the recovery floor she’d been placed on, but I cannot for the life of me remember the exact timeline of when it occurred.
First times I’ll never forget
Anyway, my mom and dad had said that they’d be there for us, whenever we needed them, and had made the trip (they live 4 hours away) to come and help take care of Lola, so that Clem and I could be there for Caelan. I can’t remember if my folks had been to the other hospital 30 minutes away to visit with my grandmother (who was my mom’s mom) but they had stopped by to visit around 5 p.m., to take Lola home so that she didn’t have to stay the whole time. This moment, is another that has been burned and seared into my memory.
The very first time I’d walked into the oncology clinic and the accompanying ward and saw the children and their families, is something that has changed everything about me entirely. What I find interesting, is how those feelings have stuck around over the years, which still feel very strong, even in recalling them. That, to me, signifies their importance and reinforces the meanings surrounding them. I won’t ever forget all of that, and it keeps me aware, if you know what I mean.
In hindsight, I find that it’s the reactions of the people around me during this time of my life that have really stuck out in my mind over the years. It’s not always what they’ve said or done, but their first sort of reaction they’d displayed on their faces is what I remember most. In prefacing this, what I will never forget, is the first time I saw my parents walk into the unit. I feel like it was the emotion that they wore on their faces, and the humble nature in which they walked when they saw exactly what I saw the very first time I walked into the ward on that fateful first day.
I’m not some pissing and moaning individual, this is real life
By the time they’d walked through the door of Caelan and Rebecca’s room (which was only a few feet from the main entrance of the ward), they’d had fully welled tears glinting in each of their eyes, threatening to overflow at any second. I hate to see people upset, and that literally ripped my heart out, but you could clearly see that by merely walking in, had affected them in ways they’d never experienced before. By the time we’d entered that world, we had no choice but to become a little bit familiar with it. Honestly, that’s not a good thing and that’s not entirely true, but I feel like it was purely a survival instinct, not to overreact so to speak, every single time I’d be in these situations. (I’m really sorry, I don’t even know how to describe this. It was so shocking and sad and I almost feel like I had to reign in my supercharged emotions. Maybe I was trying to ignore it? Maybe that’s how I tried to get through it without being drastically affected each time? I don’t even know. I can’t find the words to explain trying to push it all down and not let it overtake me and I apologize for that because there just aren’t any words that I am aware of or if they even exist to try and give a good explanation. I’m really very sorry for that. There may be others who might be able to explain it better but I sure can’t. All I can say is that the things I felt for these kids and their families, pushed everything into overdrive and amplified it all because the situation these kids are in is just HUGE and so far beyond anything I can think of. Maybe using something such as the solemnness and the tragedy of war, for example, could come close (maybe?), really because it’s just that big. Again, I apologize for not being able to convey this and give it the justice it deserves. It’s just way bigger than what I could ever write).
The multitude of emotions I’d go through on a daily basis was crippling enough as it was, and compartmentalizing it to deal with it at a later time, long after the fact, was definitely the way my mind went about doing things. Was my mind protecting itself? Perhaps.
I can’t say for sure, but I know that swinging from an anger and hate for this disease like no other, to a depth of sadness that nothing could soothe, would sap the energy my family desperately needed from me. I berate myself often for not doing more, especially when my sister was sick and dying, but the reality is, I just didn’t have it. Even after all of this time, I still don’t have it.
I fucking hate cancer
I’ve read and have heard that many people who’ve cared for their loved ones while they were sick and dying, claim that they still hadn’t fully recovered, long after the fact, even though it’d happened years ago. I can attest to this. I still take it out on myself, though, and often wonder, will I ever recuperate?
Anyway, seeing my folks affected in the same way I had been, hit me in the gut. As I said before, I would swing from emotion to emotion, often feeling the most extreme of things, from hate to sorrow and I know that I was feeling all of that while they processed the experience of just walking into the ward. I avoided eye contact for the first little bit, and after they got done hugging the girls, I introduced them to Mel and Shayla before giving them the rundown of the day’s events.
I think Mel and Shayla stayed for another 30 minutes before they left. My folks stayed for a while and then said they’d take Lola home for dinner and some fun time before bed. Lola immediately broke down when she heard that it was time to start packing up. She didn’t want to leave her sister. I don’t have a set, nor have I ever been kicked there, but I feel like this came close to describing how I felt after Lola began to cry.
They’re resilient and they’re also human too
Kids are resilient, no doubt, but that doesn’t mean that what they feel and have to process isn’t any less painful, and that they aren’t affected by that, long after the fact. Again, we felt for our children. Everything had been turned upside down and as much as we’d tried to prepare them, the normal reactions to all of these crazy things, was still going to happen regardless.
Prepare as much as you want, it will almost never go how you think it will. Sometimes it hurts worse than you expect, and sometimes you get lucky and it doesn’t. It’s all just a roll of the dice.
We gave Lola and Caelan as much time as they needed, but it was still hard to separate them. As my mom would tell me later on, not long after leaving, Lola began to vomit…yay. She’d mentioned before they had left that she hadn’t been feeling well.
We’d chalked it up to nerves, but being in the hospital could’ve meant she’d picked up a bug. Thankfully, my mother is the champion when it comes to having handy things to toss your cookies into, and luckily, she had a small garbage can with a shopping bag in it when Lola began to throw up in their vehicle while driving home. Double yum.
As I was still with Caelan and Clem, I had to rely on my folks to bail me out on the Vomitgate episode. They text me when they got to our place and kept me up to date while I was still at the hospital. Once they were home and I was assured that they had things under control, I turned my attention to Caelan.
After Caelan had her PICC line installed, I had taken over bathing her again, just so we could keep her arm clean, dry, and safe. Many that have these lines, wrap them up in cling wrap and shower normally, but we’d vowed to take extra precautions and had changed things around to accommodate that. This, unfortunately, required a bathtub, which the hospital didn’t have, and that required us to revamp our strategy.
The ward (thankfully) provided the kind of cling wrap that has a sort of sticky adhesive side for their patients, most of which had a port in their chest. Caelan didn’t have that type of hardware and I think that she was one of the few, if not one of the first who’d had a PICC line instead. With that, there were few nurses who’d dealt with this kind of line which also translated into us having to generate ideas as to how to better care for and manage it ourselves.
Clem managed to get the sticky cling wrap wrapped around and secured to Caelan’s arm with medical tape, and I had her hold her arm straight out while I hosed her down with the removable shower head. Caelan felt good after being clean and I got her into a fresh pair of jammies (pjs) from home. I admit, once everything was done and I had to leave, I too didn’t want to go. Talk about a roller coaster. Clem and I worried that perhaps Lola was throwing up due to nerves…I still wonder actually, but I think it was a stomach bug.
Before I left, I hugged the piss out of Clem and Caelan and then went on my way. Tomorrow was the day. I don’t remember driving home, but I remember my mind going at full speed, ramping up my anxiety while my brain fired up the old worry machine. I got home around 9 and was immediately consumed with trying to nurse my oldest daughter back to health.
Another sleepless night among many
I decided to try and talk to Lola about how she was feeling, but she was still tossing her cookies here and there. I finally broke down and gave her some Gravol, but she promptly threw it back up, and I knew then that it was going to be a long night. Luckily, the last Vomitgate episode occurred around 12:30 a.m.
I finally tucked Lola into bed beside me and snuggled her up, keeping vigil, to ensure that everything had truly settled down and that she was okay. It didn’t matter that I was exhausted, I was worried, and that kept me wide awake. I figured I’d sleep when I was dead…why waste hours sleeping when death was a guaranteed promise one day…such a waste of time, ha…I’m kidding!
Of course, another night with no alarm necessary, and it was go time. I made sure Lola was feeling alright and made sure I was good to go before heading out the door. They were awaiting my arrival before beginning and I didn’t want to hold things up. Hydration had been started early, once again, and Caelan had been cleared to start treatment.
Pump up the jam or meditate like Buddah?
As I’d never experienced chemo myself, nor been close enough to go through it with anyone who had, I didn’t know if I needed to pump myself up with some music on the ride or opt for quiet contemplation and meditative mind preparation during the journey. I suppose my instinct chose the path most appropriate to me, and I drove into the city with the radio playing as my mind went through it’s insane thought processes running seamlessly in the background while simultaneously cranking up my nervousness to the highest level (it’s weird that my body is doing this exact thing while I write this…it never forgets apparently). Before I knew it, I had put my vehicle in park and walked into the hospital like I was in autopilot mode, walking obliviously throughout, instinctively knowing the exact and most direct route to the ward. Funny, because just a few weeks prior to all of this, I had no idea where I was going.
Once I arrived in Caelan’s room, I felt like I’d snapped out of it. Talk about weird. That stunned autopilot feeling that I’d had many moments of all throughout this ordeal is completely bizarre because I’m used to being aware of my surroundings and conscious of my thoughts and feelings most of the time. It’s just not natural for me.
Caelan had been given all of the required meds that were a part of her protocol, which included Prednisone, Zantac, and of course, Zofran, which is given preventatively because they say that once patients start vomiting, it’s sometimes difficult to control after the fact. After the 2 hours of hydration was up, it was time to start chemo and I was terrified. In all fairness, it wasn’t anything like I’d expected it to be, completely the opposite actually.
Chemo nurses are special
If you didn’t know, chemotherapy is administered by a specially trained chemo nurse, who has extra training in giving these substances. You should know that they have to gown up prior to connecting the drugs to the patient, and I can only imagine what could or would happen if they were exposed to these chemicals without proper protective equipment. After she was geared up, the process continued with another nurse to help in the verification process. And quite the process it was.
Once that was done, the nurse hooked her up and started the infusion. I held my breath. Most of the agents used, would only take a couple of minutes to administer, while one, took around 45 minutes. Once they’d all run their course, I admit, I was pleasantly surprised when nothing happened. I thought shit would hit the fan immediately, but it didn’t thankfully.
Once they’d finished the last one, it was back to hydration for 2 hours. Another part of this cocktail that I haven’t mentioned yet, is PEG (Lax-A-Day laxative). Caelan had to drink a bunch of it to help rid her body of the chemo. Also, they measure how much output (urine) after the fact, and she had to go number one into a pot that fit under the rim of the toilet seat and ring the nurse to let her know so that she could measure it (Caelan referred to it as peeing in the hat, and that’s what the staff also referred to it as). Fun!!!
Fun facts about chemo that I’d had no idea about
What’s interesting, is that for the 2 days following the big chemotherapy days, Caelan had to use a toilet with a lid. Why you ask? Well, as they explained, when she flushes after using it, the spray will contain those chemicals that she is attempting to flush out of her body, and well, that could have serious effects on others who may come in contact with it.
Isn’t that fun and interesting? And, the nurse coming in to measure this liquid sunshine, isn’t gowned the same as the chemo nurse (I’d be paranoid of spilling). I have to wonder, how does this affect those human beings who are handling such things?
We were told that if Caelan soiled her bed, to treat it like a biohazard and ensure to wear gloves while handling them and wash in hot water. To me, that signifies that this shit is no joke and is exceptionally potent. That’s some scary ass shit right there, and I think to myself, that’s what they put into sick people to try and cure them (I’m sorry, just my thought process, ha!)…how fucked up is that?
The actual chemotherapy process took about 1 hour and 45 minutes total, and after that, the day went on uneventfully (I was intrigued by the Doxorubicin because it can cause red or pink colored urine, sweat, tears and saliva in some people and sure enough, Caelan had red urine). Caelan was allowed to leave her room once she was done with the chemo drugs and was only being flushed out. Since the byproduct of being flushed out had to be measured, we really didn’t wander too far from the ward.
Not long after, a nurse had stopped in to discuss the contents of a large binder that had been given to Clem upon Caelan’s admission. She had been the one to give it to him and stated that he needed to know the contents of the entire thing and that she’d be in to quiz him on it prior to Caelan being discharged. This woman, in my opinion, shouldn’t go near any of the families whose children are being treated for cancer. I’m sorry, but I found her to be cold, heartless, abrasive, and extremely rude.
She was a total bitch. There, I said it. I give credit where credit is due and I usually bite my tongue and not usually say bad things about others, but this lady was exactly that to us. I believe she was in more of an administrative role, but her demeanor and attitude towards us was horribly shitty that day.
Clem was shitting bricks a bit because he was more concerned with Caelan than the book. Besides that, I’m more of the medical information reader. He stressed over trying to get through the contents, especially since most of it didn’t really apply. We were facing a short but intense protocol, and it wasn’t leukemia that Caelan had.
Anyway, the most important information, was knowing the days when Caelan’s neutrophil counts would drop and be at their lowest. It’s one thing to help step people through things, make them aware and help guide them, but it’s another to intimidate and belittle someone when they’re new to the game and still haven’t got their wits about them. Again, all I ask, is that people have a little compassion. We’re not all doctors and nurses and we may not fully understand everything medical, that’s just the who we are.
When the crotchety bitch walked through the door in her exceptionally high heels, I wanted to knock her on her ignorant ass. What a fucking miserable human being. When she finally opened her file and saw that we didn’t really need to know everything from front to back, she remarked in a snarky tone that she was still going to drill us anyway, and proceeded with her quizzing. She was such a condescending, miserable, nasty sadist…for shit sake be nice for once lady, it wouldn’t hurt.
A delicious spread and a sprint to the potty hat
Once she left, all of the tension left the room with her. No more walking on eggshells thankfully. As if we didn’t have enough stress to deal with. Believe me, I get it, people have bad days, but this human, she was apparently always like this.
Around dinner that evening, some very good friends of ours brought us dinner, dessert and a whole bunch of things for our girls, in addition to visiting. It was an amazing spread, and very much appreciated and we thanked them profusely. As luck would have it, we’d foolishly met quite a ways away from the ward in another huge common area of the hospital and Caelan ended up having to go not long after we’d eaten…that bloody potty hat I tell ya.
Yeah, we should’ve planned that better, but what can you do when you’re a newbie. We apologized to our friends and had to run back to the room with Caelan so that she could pee in the hat. A bit of a pain in the ass, but what can you do?
Unfortunately, cookie tossing is to be expected, but I hadn’t considered some of the other things long after the fact
I stayed with Clem and Caelan until 8 p.m. and decided that they were both doing well enough for me to leave and get home to Lola. I wanted and needed to spend some time with her too, and ensure that she was okay. Clem and Caelan visited with Rebecca and her mom, but around 10:30 p.m., Caelan threw up all over the floor. She was immediately given a dose of Gravol and cleaned up, before falling asleep.
Caelan managed to keep her cookies down that night, thankfully. She hates throwing up, and she’s never forgotten the ordeal. At some point in the very wee hours of the morning, Rebecca began to have what Caelan recalls as a really bad night. Apparently, she developed a fever and had a horrible headache, which is not a good sign.
As I’ve written before, you don’t know, until you know and yes, kids are resilient, but even so, they’re not invincible. If you remember a few pages back (oy vey this is getting long, ha!) when I told you about Rebecca, you’d know that she had been the hospital for 5 months already, due to extremely low counts that hadn’t risen after her treatment for her leukemia. She was cancer free but recovering and at the time, I had absolutely no idea the things that could and sometimes do happen after treatment ends…ooooh boy was I ever clueless.
Caelan had her medications again in the morning and was doing well, but not too long after (around mid-morning), Rebecca began to tank (literally). The oncologist who’d been on call all weekend was very aware and sensitive to the needs of his young patients, as were the nurses, and they hopped into action quickly. They told Caelan that Rebecca was going to be alright, but they wanted her to go and play for a while in another area while they helped Rebecca, all that said (as Clem recalls), as they rolled a crash cart into the room to prepare for what could possibly happen next.