My young Caelan is quite the character. I am thankful that she is easygoing and level-headed like Clem and I’m tickled pink that she’s acquired my sick sense of humor and wit (I admit, sometimes that scares me because she’s so young). With all that’s happened in her life, both of these traits have served her well I think.
These past 5 years haven’t been easy for her, especially in the friend department. She has been on and off with her bestie and recently decided that it was time to part ways, which is sad because this friend had been with her since kindergarten and throughout all of the ups and downs we’ve had throughout this time. When things took a turn for the worse in this young lady’s life, Caelan was right beside her when she lost her dad last year too, so despite them being young, this was quite the friendship.
I fully understand what Caelan’s gone through because I’ve pulled back from people and know what it’s like to be alone. Things just aren’t the same, including everything about me and it’s difficult to find people who share similar interests and outlooks now. Just trying to relate period, is difficult. Surviving the things life throws at you is one thing, but learning to navigate afterward is an entirely different beast in itself.
Everything has changed for us and this past year has definitely not been easy as we were just about to step back into the world and live the life we wanted when the entire world shut down. Before this, we already knew that time is limited, life is precious and after the experiences we’ve encountered, things happen. It feels like we are back at square one and by the look of things, we will be living within this little contained box for the remainder of our lives.
Caelan is no different at 11 years old, and as of late, I am so happy to hear her laugh. She has recently found someone who finally gets her and what a difference it has made. Thank goodness and I hope they continue because I’ve never heard so much laughter come from Caelan in her entire life…that’s a huge win in my mind. I don’t know if it’s because the kids around her are getting older and are finally able to understand her sense of humor or if she’s finally stumbled upon someone who is like-minded, but no matter what it is, I’ll gladly accept this gift.
I write often about my kids and I’m sure people wonder about this little family of mine and there are reasons why we are the way we are. Maybe it’s good and maybe it’s bad but, we are who we are. In saying that, I’d like to continue telling Caelan’s story and that may explain many of the things I write about because her journey completely changed everything. If you’re interested, this was the last post I’d written and now, Caelan’s story continued…
Back to the hospital…again
The next day, Caelan went back to the hospital and had an ultrasound of her stomach, confirming what the oncologist had said the day before, no cancer to be found. Yay for good news. While she was there, they wanted to remove the stitches from the biopsy site…errr…yay but not so yay.
As it wasn’t a previously arranged visit, they decided to remove the stitches without sedation. I thought that that was how it was done, but apparently, they prefer to sedate kids. I can totally see it from their point of view, but over time, I have grown alarmed at how nonchalant doctors are when using these types of drugs, especially when it comes to children. Call me old-fashioned, but I come from a time and a family that only utilized a hospital or doctor when it was necessary and I still see things such as medication and surgery as a pretty big deal.
To me, drugs are heavy hitters that potentially come with some hefty consequences and we just don’t know who will be affected until they are. I know, I talk a lot about risk, and many disregard that, but after going through all of this, I still feel it’s important to consider. Things can go wrong, some of which can be severe. Again, just my thoughts and where I come from…especially after these past 5 years.
I know, I’m cautious
As I personally haven’t had much experience by way of medical procedures and the medications used alongside them, the one occasion that I did, left me wondering. Call me inquisitive but I did end up reading up about it. What I found was quite interesting, and who knew that having this information might serve a purpose at some point down the road.
I had a procedure (when I was trying to have another baby) where they used conscious sedation a few years ago and although not a horrible experience, I did wake up in the middle of it due to feeling pain. I was given something prior to for pain, but I still awoke and remember asking if I should feel what I was feeling. I was quickly given more sedation and the next thing I recall is waking up and everything was done.
It wasn’t a horrible experience (aside from the nausea I dealt with well into the day afterward, but that could’ve been from the antibiotic I had to take as well…Clem says no but I find I experience all sorts of things with over the counter products sometimes), but it made me wonder if that was a normal experience. As it was, in the information I was provided, I’d thought I’d read that I’d still be conscious but comfortable. I can honestly say, I didn’t feel conscious, far from it (not certain if conscious sedation is supposed to mean lightly asleep and easy to awaken or awake and somewhat aware…definition wasn’t exactly clear to me and would probably depend on the individual I would say).
Every experience is different
After having gone through this, I wondered if it was normal and decided to see if anyone else had had the same experience. I was astounded to see that I wasn’t alone, and in fact, some of the things I’d read were downright horrifying. People remembering, sometimes a while after their procedure, and being traumatized by the memory of awakening due to extreme pain.
Not only that, I’d read that pain control measures should also be utilized with sedation (depending on what was being done) and I found that a few doctors simply skipped that step entirely either due to cost, or they simply felt it wasn’t needed because their patients wouldn’t remember what was happening to them. Well, surprise surprise, some people were waking up and remembering and it seemed to be causing some psychological damage. That’s horrifying to me.
The denial from doctors ran high during my reading many years ago. I guess if they don’t experience it for themselves, how would they know? It kind of makes you wonder what else we don’t know or refuse to acknowledge…
Food for thought I suppose
After reading and experiencing this myself, it made me aware of just how different each one of us truly is. Our experiences are obviously not going to be exactly the same and I find it fascinating that medicine doesn’t seem to take this into account. A little scary now that I think about it.
In addition to that, some people had bad reactions and some didn’t have the intended sedation they thought they would. I was a little freaked out after reading about pediatric dentistry too. That one really rang a bell because many children seem to be subjected to it without a second thought.
I hope that you can understand where I’m going with this. If you’ve read previously, I believe in being informed and I try to educate myself as much as possible before committing to anything medical. Yes, bad things can happen, not all of the time (I’m finding that many do not report their experiences and some try but are apparently dismissed), but being aware is important and asking questions even more so.
I ask questions, is that a crime?
I’m the furthest thing from confrontational but I do ask questions. I am not condescending nor combative, I just seek information to feel comfortable with my decisions and possibly be prepared should something happen. I’ve made mistakes in the past where I didn’t ask the questions I needed to or didn’t ask enough and have ended up paying the price. Let’s just say that I’ve learned some lessons the hard way.
Anyway, Caelan managed to get through stitch removal without being sedated. The surgeon was impressed with her but I’d be lying if I didn’t say there were fears and tears involved (according to Clem, it was torture for Caelan). I can’t blame her because that part of the neck is quite tender and having to pull the stitches up enough to clip them, probably didn’t feel great. I know that being sedated would’ve been easier psychologically but as I said before, would it have been the same physically…we’ll never know.
I had stitches in my leg once, from running into the bumper of my mother’s 1984 shit brown Buick Skylark when riding my sister’s ugly pink bike. Glamourous, right? When the time came to have them removed, the sensation from the tugging on the stitches before clipping them was very odd and I couldn’t tell if it was painful or not, probably from nerve damage.
What you don’t learn after the fact
After Lola needed her chin stitched up from a skateboarding accident a few years ago, I don’t know why we didn’t inquire about glue instead of stitches. The things you learn later on hey? I wish I would’ve known (I now wonder why they didn’t offer it) because it could’ve possibly saved Caelan a lot of heartbreak if we’d been able to do that. On the other hand, the fluid leaking from the site may have prevented that from working too…coulda, shoulda, woulda.
We all have to make tough decisions and in the end, and ultimately, we felt we had to do what was right for Caelan. Having to continually go to the hospital day after day to have Tegaderm ripped off the surgical site (which would’ve been 3 or so hours out of our day), probably would’ve been just as damaging in the end too. There was no right or wrong answer and both had their positives and negatives. With that, I am going to free myself from continually kicking my own ass for the decisions I made in the past…it’s over Ali, let it go.
Anyway, Clem was the one who took her to this appointment and I often wonder how he felt having to witness all of these things being done to our daughter (I’m sure he was traumatized because there were things that happened that haunt me to this day and he’s witnessed more than I). I haven’t mentioned this, but my husband felt that it was his duty to protect me and often took Caelan to many of these procedures. In his words, it wouldn’t have been good for me, but I also acknowledge that he felt like he needed to be there to protect Caelan. He has a very protective side, so it really doesn’t surprise me how this all turned out.
One more down, only 10,000 more to go
So, another procedure was done, and a bit more to go before we knew what kind of treatment to expect. They booked Caelan in for her bone marrow biopsy and aspiration, and the insertion of a PICC line 2 days later, on Friday. If you’ve never experienced or heard about a bone marrow biopsy, I’ve heard it can be painful and honestly, it makes my toes curl just thinking about it…keep everything above in mind regarding sedation as you read.
Throughout all of this, my kids were faring alright. If I could get them to school, I did and if Lola could go while we were away, I got her there with the help of friends. Thank goodness for my community.
I remember the Friday being another one of the many long days we spent at the hospital. We had to be there at 8 a.m., which meant we needed to be gone before 7. We had to drop Lola off with a friend whose mother graciously volunteered to take her to school because it wasn’t open until much later. The school had a theme day involving hats and I had purchased a couple of foam top hats and some decorations from Michaels so the girls could make themselves some one-of-a-kind lids for the occasion.
Sick kids miss out sometimes
Both girls had fashioned the hats days earlier and I remember Caelan was devastated that she wouldn’t have the opportunity to wear hers at school that day. We told her to wear it to the hospital and anywhere else that she could to try and make her feel better. She was happy about the compromise, but still bummed that her friends wouldn’t see it. I think we’d had an hour-long wait before the biopsy and thankfully, Caelan was provided a craft to pass the time (not that we didn’t have a big bag full of stuff packed from home already) and I believe I have a photo of her sitting on the bed, wearing her hat and crafting, somewhere on my computer.
While standing around waiting, we were introduced to one of the oncologists we hadn’t met yet. What was interesting was that I’d read an article about him previously and found him to be very impersonal. In person, I wasn’t surprised to find that I was right…odd for someone working with children I think. I’d secretly hoped we wouldn’t have to deal with him because I found him to be very off-putting and didn’t think Caelan would take to him well…let alone me.
Before we were taken to where we needed to be, we met the nurse who was performing the bone marrow biopsy. She had explained that she was going to make 2 small slits in the area where she was going to take the samples and that they wouldn’t require any stitches. I was a little worried about having my child sliced into and the area not healing well (we just experienced that with the biopsy site), but she assured us they would (and they did…in case you’re wondering).
As I said, I ask questions
She did ask if we had any questions, and at the time they hadn’t mentioned if they were also taking an aspirate sample, so I’d asked for confirmation of that and the other thing that I was concerned about was pain control measures being taken in addition to the sedation. Previously, during our consultation with Caelan’s surgeon, we’d asked about the bone marrow biopsy because he was admitting her the very moment we met him and he was doing her surgical biopsy, her bone marrow biopsy, and port placement all in one shot. Obviously, that didn’t happen, but the question as to why he was doing everything under anesthesia came up and what he told us about bone marrow biopsies made me a little queasy.
Basically, he said the painful part wasn’t the needle going into the bone, it was when they removed it. I think it was how he demonstrated that with the disturbing popping noise he made as he imaginarily yanked his arm up into the air with an imaginary instrument in his hand that made me go blech. So yeah, he said he wouldn’t want to be awake while that was happening, so I thought I’d better ask because they were using sedation but there hadn’t been any mention about pain medication (not that I really wanted more drugs pumped into my kid’s system).
I was only looking to be sure that my daughter wasn’t going to suffer any more than necessary, especially since we were just at the beginning of this shit show. That was all. My previous experience and subsequent reading made me wonder and I just wanted to be certain. After a moment, she said that they use pain medication but she had some look about her that made me wonder if she thought I was a joke.
Shortly after that, we went with Caelan down to the imaging department of the hospital where everything was taking place. I admit that going into the room with Caelan and watching her breathe in something that smelled similar to nail polish remover and being unconscious within seconds is a bit freaky, to say the least. I never got used to it and she had to go through something similar to this numerous times.
It has never sat well with me, the same as when every medical person we met just kept saying she’d be fine. I’d like to know how many of them had experienced this at that age or had their own child go through it. It’s certainly not easy and the whirlwind of emotions alone is exhausting, let alone everything else you have to deal with. Fine is very subjective and the things that we’ve dealt with and continue to deal with, aren’t exactly fine all of the time.
At that point, I had a checklist in my mind that kept me focused. Every time Caelan had a procedure or appointment for something, it was a check off the list and one less thing to do before we were hopefully out of the nightmare. It was the only thing that I had to reinforce that there was a light at the end of the tunnel. There was an ending eventually, we just had to get there.
I’m thankful for kind people
As Caelan had brought the hat she’d worked so hard on, she was happy that she got to wear it somewhere. She wore it everywhere we went in the hospital that day. Thankfully, the world has kind-hearted people who, without having to know any details surrounding the funky-looking hat, reached out to her with compliments and put a smile on her face. If you happen to be one of these kind people, thank you, from the bottom of our hearts…you just never know when a kind word or smile makes all the difference…for us, it made all the difference that day.
I was worried about Caelan and the new hardware she was having installed and what that meant was coming. I worried about Lola, who went to school without having my hug and kiss on her cheek with an I love you before saying goodbye at the door right before going to school. I hoped that she was doing okay and couldn’t wait for all of us to be together again. I hated that I couldn’t be in 2 places at once and worried about how we were going to manage everything.
The thoughts I’d had, revolved around the fact that I thought life had chosen the wrong family to navigate this path. I felt that this journey was reserved only for the strong and I didn’t think we were strong enough. I realized that we had nowhere else to go but through it and that there was no other way which only added to the anger, fear, and frustration I felt.
Horrible things could happen but just pretend that it won’t
Luckily, everything had gone well and the day was long but uneventful. I think we spent at least 2 hours in the outpatient ward within the oncology unit and in that time, we were taught about Caelan’s PICC line. I was given a stern lecture about letting her determine her own limits by the nurse. If you ask me, that’s kind of ridiculous, especially after they scare the shit out of you about the bloody hardware they just installed.
If it gets pushed in, it’s an emergency and you need to go to the hospital immediately because it could damage her heart. and if it gets yanked on and pulled out, she could bleed to death. Yeah, no problem! Do these guys sit around huffing that shit that smells like nail polish all day or what? This is a 6-year-old…what do you think they do all day…sit and look pretty?
Just wait until you read about chemotherapy and everything we had to learn then! Talk about a moment of my life that I won’t ever forget, yeesh! They scare you and then tell you to go on with your life. Right, and unicorns are real…I’m sorry, but I think these people are out of touch with reality.
Life was changing
At that point, my toes were constantly curled thinking about the plastic tubing that was protruding from the underside of Caelan’s upper left arm, anchored to her skin with blue sutures and secured under a large Tegaderm film, and how far into her chest it went, just sitting right outside of her heart. I didn’t want her to run and snag it on anything like my pointy door handles, which are nothing like the usual door knobs I was accustomed to once upon a time, and I can tell you that these handles snag the belt loops of my jeans often and easily (I’d read about a kid who snagged his PICC line on these very door handles which added to the anxiety I had). I also wanted her to be careful about doing something that could push it in, and if you think about it, that could’ve been anything.
So, they read you the riot act and expect you to be as cool as they are about it…but that wasn’t happening. I was already going to do everything and anything to avoid it from getting infected or pulled/pushed in and yes, she would be a bit limited. The night before she had this line installed, was the last time she was independent in regards to her bathing needs for months. We did eventually figure out how to wrap the damned thing in cling wrap and seal the ends with medical tape to keep her arm completely dry but I still did the hair/head washing until it was removed and all healed up (she held her arm up and out of the water the entire time).
After a very very long day, all I wanted to do was go home to our safe place. Unfortunately, my in-laws had decided that they needed to come down and see their granddaughter before she lost her hair. That’s pretty much the reason and they didn’t seem to give a shit that we were exhausted and just wanted to be left alone. They did, however, pick Lola up from school for us which was nice, but none of us was up for visiting.
I was mad. I didn’t feel like having company and the reason for them being there made me sad. I was sad because of what was about to happen to Caelan and none of us were ready for it. I was trying to hang on to every moment I could with just the 4 of us because I knew that things were going to be different for a while.
Life was changing drastically by the moment and we just never seemed to have time to get our feet under us before something else was thrown into the mix. On top of that, it felt like we were expected to be our usual, normal selves. By this point, I had no idea what that was anymore…normal…hmmm…