Happy Easter! I hope you’re all enjoying the weekend and that the spring weather has finally sprung wherever you are 🙂
Sometimes I feel like I was having a pity party for one and sometimes I feel like I had no choice but pull back from the world. My life felt like it was a nightmare and yet, I couldn’t escape it. I was in a daze and consumed by cancer and everything surrounding it, none of which I equated with anything good. That sums up much of what I remember about this time in my life.
We’d left the hospital with just a mesh sleeve covering Caelan’s new PICC line and at first, she wasn’t happy about having to see it. As I mentioned previously, the damned thing made my toes curl just thinking about it, and seeing it, merely added to my heebie jeebies. I knew that we needed to protect it with something other than the mesh provided and hide it in a way that was safe and funky for Caelan.
As soon as we got home, I sent Caelan to my room to rest. I was worried about her new hardware and everything that could potentially happen with it. With my in-laws being there, it felt awkward for me to just sit and be. It’s not like there’s a switch to turn off and on the emotions and thoughts that run through your head after going through all of those experiences but it would certainly be nice if we could.
Sometimes I wish I could just be one of those people who don’t give a shit
My in-laws are the type of folks who never seem bothered by any of these things and just follow whatever advice is handed out to them by whatever doctor they see. I’ve never understood these types and have never been one to just throw whatever event that happened over my shoulder and carry on like nothing ever happened. Is this a superpower? As my house isn’t laid out in a fashion where bedrooms have privacy and quiet, all I heard was their loud voices coming from the living room at the opposite end of my house.
At the time, Clem felt like he needed to serve his parent’s wishes and had come to ask if Caelan or I were going to come and visit. I was annoyed because I was exhausted and felt very protective of our daughter. Of course, any time sedation was used, I felt inclined to watch her carefully, especially those first few times she was exposed to it as I had no idea how she’d react to it.
Also, I worried about something possibly happening with that PICC line that would send us back to the hospital for the umpteenth time. I just didn’t trust my in-laws around Caelan at that point, it was all just so new. Yes, the mama bear had certainly come out in me and I think that’s a normal response and not an abnormal one, such as how modern medicine apparently thinks.
After a while, Caelan was feeling more like herself and asked if she could go and play quietly in her room, which I had no issue with her doing. I decided to take the opportunity to see if I could find any ideas from those who’d had PICC lines and what they did to protect them. Most of the ideas I’d found, were from adults and the things they purchased and recommended, wouldn’t fit Caelan’s small arm.
I can’t remember if it was Clem or I that finally stumbled upon a parent who’d discovered an excellent idea and we decided to try it for ourselves. They’d said that using baby tights that didn’t have feet or footless tights (they’re sewn to prevent fraying at the ankle) and cutting off the top portion, just before or at the inseam, would help keep the PICC line firmly in place. Because they came in funky colors and prints, it made it look like a tattoo sleeve that was fun and breathable, especially since the weather was warming up.
As Clem’s parents were staying with us, it was difficult for either one of us to leave and get a pair of these tights to try, so I decided to crochet a cover for the weekend. I admit, my first attempts were alright, but they made Caelan sweat, and we didn’t want that, so my idea was thrown out the window not long after. I did try using different types of yarn over time, but the footless tights worked better than anything.
We tried many things, including a bike sleeve that didn’t fit because we couldn’t find any that were child sized that shipped to Canada. We found a child sized PICC line sleeve but we weren’t overly thrilled with it either. The sleeve didn’t keep the 2 ports covered because it wasn’t long enough and I didn’t want them left hanging out. In the end, we’d found that the tights provided enough snugness that it wasn’t uncomfortable and it allowed us to choose the desired length.
They were washable and if they frayed or if Caelan wanted a new one (we had several), they were cheap enough to buy from Walmart. Thank goodness for that. So, if you ever need to cover up a PICC line, and want an easy and cheap sleeve to try, we recommend footless tights. I’m sure adults could use child sized tights and I believe we used an 18 month to 24 month size for Caelan who was 6 at the time. Hopefully that helps someone down the road.
So, after a weekend of entertaining Clem’s parents, we found ourselves back at the hospital on the Monday. Yes, there were many trips to the hospital within a very short timeframe. I have to say that the diagnosing part was the most tedious in regards to constant back and forth hospital visits.
The mind of a 6 year old cancer patient
By this time, my young daughter had become angry about finding the lump and she was having difficulty accepting that she had cancer. As a mom, I had no idea how to help her and could only sit and watch her struggle with accepting that this was happening and feeling guilty for causing our lives to become completely derailed. It didn’t matter what we told her, she was mad.
Telling her that she was her own superhero for finding her cancer and explaining to her that she saved her own life, was pointless. Having to go through the motions with diagnosis and preparation for treatment overrode any and all superhero feelings because she was in hell. That’s where she felt her discovery had led her, hell. As a human being, I couldn’t deny her feelings because they were justified, this was hell, especially for a child.
Every night before bed, Clem and I offered our ears to both of our kids. The impact of having one child with cancer, certainly affected everyone and the girls had no one who could even remotely understand what they were going through that were their own age. The very same could be said about Clem and I, no one around us had any idea what we were going through, only other parents who’s children were going through the same thing. We are few and far between and even then, I noticed many different things I’d never considered, in hindsight.
Clem and I connected every night with our girls and tried to validate their feelings and let them vent and ask the scary questions as they needed. I never lied to my kids and always attempted to keep them informed but some days, I wonder if we did the right thing. I don’t think shielding Lola would’ve changed anything and concealing everything would’ve been much more harmful I think but I’ll never know.
Monday was another full day of appointments because Caelan had to have an ECG (or EKG) and an echocardiogram to get a baseline of her heart. As explained to us, the chemotherapy they were about to use, can damage the heart. Yeah, another heart stopper for me…she was stage one…didn’t that perhaps mean less potential complications down the road because she wouldn’t need as much treatment? When your kid has cancer, you’re either damned if you do or damned if you don’t I guess and stage one still requires some potent treatment…as you’ll see.
We brought Lola with us that day, and I’d noticed that many siblings were not usually present from other families we’d seen. Clem and I contemplated whether or not she should be a part of it all and ended up deciding that we should ask her how she felt about it. Just prior to all of this, Lola had been having difficulty being in a classroom that had constant (and sometimes violent) outbursts from students and turned to pulling out her eyelashes in response to the stress she’d been dealing with (Trichotillomania).
She was in grade 3 and had just turned 9 years old when all of this was occurring. I admit, this particular year was insane for me because prior to Caelan’s cancer discovery, I found myself in Lola’s classroom once a week to help out (I enjoyed volunteering and was at home so I could help if teachers needed and was going in twice a week, usually a half a day for each kid). Lola had a great teacher that year but our government wasn’t providing the necessary support (and probably still isn’t) for the many children that required it that were in her class at the time. I believe there were 4 or 5 kids that needed an aide (in her class alone) and there was one aide assigned to 2 classrooms and to how many kids in each class who desperately needed one on one teaching, with no other help to be found.
Consequently, we had Lola talking to a psychologist and had been working with her on dealing with stress in a different way because we couldn’t control what was going on in the classroom (apparently, each class had their own challenges with much the same, so moving classes wasn’t much of an option). I’d found that she was better prepared to deal with things if she’d been informed, and knew and understood what was coming. I don’t know if Clem and I made the right decision in bringing Lola into this, but there’s no manual on how to deal with your kids when one has cancer. Even if they did, it’s still a matter of what works best for each of us.
Lola said she wanted to be there for her sister and because we had long days ahead, she wanted to be with us whenever she could. Because both of our girls were in the school choir and they had a concert that evening that we said we’d try and get them to, if we could, it made sense strategically for Lola to come with us. So, we had outfits packed with plans to hit the venue before heading home that day…well…that was the plan.
The role of the big sister
The ECG and echocardiogram took around 2 hours. Clem went with Caelan and I sat with Lola. Instead of tuning into my phone, I took the opportunity to have some quality time with my eldest daughter, one on one. I wanted to check in on how she had been doing throughout all of this because we hadn’t had the chance to talk over the weekend.
I quietly asked her how she was and she whispered back that she was doing alright. As I was about to ask what else had been going on in her life, she turned our discussion to what we could do to support Caelan. With concern, she asked if Caelan was going to lose her hair when she started chemotherapy.
At the time, I had an idea as to what kind of treatment protocols may be used (in adults) and knew that Caelan was more than likely going to lose her hair. I also knew that this was a worry of Lola’s and told her that we should expect that to happen but that it would eventually grow back. Hair is obviously a very big thing to her.
Childhood is a one time thing
I remember being that age once upon a time ago and hair or the cutting thereof, was absolutely not something I would’ve been willing to entertain. Lola was appalled at the thought of Caelan losing her hair and quickly let me know that she would shave half of her head for her sister. I couldn’t help but laugh and I told her that she didn’t have to shave her head if she didn’t want to but I knew that she’d thought long and hard before announcing her decision. Lola, of course, insisted that she would and also told me that she couldn’t imagine what her little sister was going through.
For just celebrating her ninth birthday, I realized how much my daughter had changed in the few short weeks prior. It was a tad bit startling to say the least and I was sad that she was having to go through all of this. My thoughts about my kids and cancer affecting one of them at such a young age, always turns to how quickly they had to grow up.
For me, that was one of the biggest tragedies (in our case) and the fact that no one can ever get that innocence of childhood back afterwards. Never. For the changes that I’ve acknowledged in myself and the struggles I’ve had, I can’t imagine how my children feel and what goes through their minds.
Whispers of pediatric cancer are apparently not whispers
As Lola and I were whispering back and forth about what she was planning to do with her hair, I noticed that the waiting area had fallen eerily silent. When I finally straightened myself up and glanced around the room, I saw gazes shift quickly and uneasily away from us. Apparently, we weren’t as discreet as I’d thought.
I put my head back down, close to Lola’s and decided that a change in topic was necessary. We’d packed a bag with some activities and snacks for the girls and Lola pulled out some coloring while I sat and watched. I’d felt completely alien in my skin since that very first phone call from the pediatrician way back when, but this just amplified it. I can’t fault people, it’s a normal and natural reaction I suppose.
It was in that moment that I realized that we’d just become that family and what I mean by that family is, that family with the kid who has cancer kind of family. The that family who others watch and sometimes perhaps stare at with wonder and I’m sure thank their lucky stars that they are in fact NOT that family. It’s okay, we’re all human and I can’t blame anyone for their natural reaction. Just know that we never asked for nor ever wanted to be that family and we are or perhaps were normal people, just like you and believe me…we felt the stares and knew you were talking about us 😉 and as I can only speak for myself, I am approachable, not scary, and it’s okay 🙂 .
Yup, we’re that family
The fact that this happened before my child was bald, which seems to lead people to automatically conclude that they have cancer (which isn’t always a correct assumption), clued me in to how the emotions of others influences the atmosphere around them. I’m not one to be the center of attention, ever, and I didn’t care for the feelings I felt in that moment, but I can certainly say that I got a good taste of what was to come. For as introverted as I am, I knew I was going to feel a lot more than a little uncomfortable once the ball got rolling and I worried about how we were going to survive this aspect of Caelan’s journey.
If we had a Batcave like Batman, I’m 100% positive that we would’ve retreated immediately, well I would have. Actually, I know that Caelan would’ve joined me with no problem too. I know that this is exactly why I am ready to leave the town we live in for a secluded acreage in an area we’ve never lived, anonymity and a fresh start.
I also know exactly how my sister felt when she didn’t want anyone to know that she had lung cancer. None of us ever wanted to be that family or those people because there are stigmas and whole host of other things that go along with these labels. After my experience, I sometimes got the feeling that some people had certain expectations or perceptions about us that weren’t our reality. I will talk about this more as I go along.
Life was chaos
Once Caelan and Clem finally emerged from the ECG and echocardiogram, we decided to get the girls some lunch and head to our next appointment for the day. We were finally getting a firm diagnosis and treatment plan. Even after going through this entire gamut, I was nervous about the meeting.
I had some idea as to what was to come but no set direction. Either way, we knew that chemotherapy was going to be involved and there was no way around it. I was having horrifying thoughts about what it had in store for us and I questioned whether I was going to be able to handle it.
My mind was constantly reiterating that I wasn’t strong enough and I still felt that only strong people got through this and that wasn’t me (gosh, wanna talk about perceptions and expectations of others hey?). The medical drama going on in my life at that time was beyond overwhelming, especially since I’d never encountered it at this magnitude before. With my grandmother still fighting for her life in the ICU with some kind of unidentifiable pneumonia, I really felt that my life was in complete chaos.