“I’ll Take, Something You Don’t Want to See Lit Up Like a Christmas Tree for $1,000, Alex.”

“A type of medical imaging that uses radioactive tracers and can be used to detect and stage cancers.”

“What is a PET Scan?”

“That is correct!”

I’m not as fluent in writing Jeopardy! questions, especially in regards to medicine, but I took a swing anyway!

These were the years I could only hope and wish for, when Clem and I decided to start our family. The years of extracurricular activities, field trips and just plain old fond memory making. The time before the hellish teenage years when your kids want to hang out with you and goof around while getting to know the people they are becoming, should be one of the most enjoyable parts of parenting. Each age and stage has it perks, but these years excited me the most.

The years of trying to conceive before becoming pregnant with Lola, were full of sorrow and mourning beyond words. We never thought we’d ever have a child to share our childhood experiences with. It’s a different kind of sorrow and mourning compared to any other because it’s a feeling of loss without ever having whatever you’ve lost in the first place.

It sounds funny to miss something you’ve never had, but I’m certain many have experienced this feeling in regards to objects, jobs or whatever else they thought that they had or could have and can relate. I feel like it’s more of the hope and the possibilities surrounding whatever it is that we mourn, that signifies the loss we feel. We never thought we’d experience the things we longed for, until we had them, and I never imagined finally having kids and then dealing with something like this. A fight to have them and then a fight to save one. Bitter and sweet, all in one bite.

The years that we should’ve been enjoying our kids in a carefree time, have been blown on worries, uncertainties and medical procedures. It’s time that we will never get back, with repercussions that we are still dealing with right now. It’s unthinkable to most, having a child fall ill because most of us think it won’t happen to me or it couldn’t. I mean, I was thankful it wasn’t us when it wasn’t, but I’d just never thought it would end up being our path. I still feel like I’m floating in denial and question if it really did happen.

16 days, and counting

It was 16 days from the time the pediatrician called us to say that he thought Caelan had cancer, to the time she had a PET scan. It was a very speedy process, one that still leaves my head spinning. It was cold to hot in mere seconds and the only thing I felt I could do was try and go with the terrifying flow while hanging on for dear life. Sounds like life, doesn’t it? Hanging on by whatever fingernails you haven’t chewed off yet kind of hanging on. Sometimes, it makes me wish that not only had I had the extra hands I wished for in early motherhood, but the extra fingers too.

The two days after Caelan’s surgery, was spent going back and forth to the hospital for Tegaderm Film changes. The first day after surgery, they ripped off the original bandage and placed the film over it. By evening, a pocket had filled with fluid from the incision, prompting us to contact the surgeon again. He told us to poke a hole in the Tegaderm and place a piece of gauze over top to drain it, and we had to go back the next day to change the film again. As I mentioned in my previous post, they don’t remove it as gently as one would think, and this where we began to deal with the PTSD in relation to medical procedures with our daughter.

It’s the furthest thing that people think of, when they consider traumatic experiences because it wasn’t the surgery that caused it, it was the bloody covering changes. I can honestly say, that over time, it transformed and became worse as we experienced more. I write about this because it also affected my sister and I think it is severely neglected within the medical realm. It needs to be considered that any action can become a trigger. I’m not saying sugar coat the shit out of stuff, but as I said before, things need to change and I’ll just leave it at that for the time being.

‘Normal’ childhood, what’s that?

So, in the 2 days following surgery, there were 2 more trips to the hospital for covering changes. Basically, Caelan’s incision wasn’t healing and sealing. I’m not sure if this was because of the cancer coursing throughout her body which was interfering with the healing process, or lymphatic fluid oozing out of the wound from the lymph node that’d been sliced into, or difficulty in attempting to suture the wound shut using internal sutures. Perhaps it was all of the above, I never asked. Internal sutures are an attractive concept because having the external ones would’ve required sedation to remove them, but in this case, it hadn’t fully sealed the wound. We were in a bit of a pickle.

Caelan was scheduled for a PET scan on the Friday for staging purposes (even though cancer hadn’t been formally diagnosed yet), so she’d gone to the hospital 4 days in a row that week. By that time, she couldn’t stand any more Tegaderm ripping, nor the 3 to 5 hour days of driving to the hospital and back complete with bandage changes. She just wanted to be a normal kid and stay at home to recover from surgery. I don’t think that was too much to ask, so Clem and I decided to contact the surgeon to figure something out before we had to go back for the PET scan.

Between the sleepless nights and caring for my daughter, the unknown future constantly dominated every thought. My mind would jump from blatant denial that she wasn’t sick to this was just a bad dream, to losing her. It was a slap in the face when I realized (like really and truly realized) that these are some of the very real realities that normal, regular, everyday people, just like me face every single day. These realities are portrayed in society as a rare, diamond encrusted, rainbow colored, Skittle shitting, flying unicorn, instead of what it really is. I don’t know if it’s because we have become numb, are in denial or if we truly just don’t care, but I feel we’re definitely, completely disconnected with reality.

It’s sad to think because I know that there are so many out there who do care, it’s just not the majority. Maybe I’m wrong, and I’d really like to be, but it doesn’t seem that way. I understand that life isn’t fair, but you’d think that if we call ourselves ‘civilized’ and ‘advanced’ that many of the atrocities that cause these harsh realities, would and could be avoided or minimized by now. I feel that that won’t happen until it becomes the ‘majority’s’ problem, or the ‘majority of those who have control’s’ problem and even then, I don’t think that the rest of us would benefit from any solutions put forth. That goes against the grain in regards to greed.

Christmas tree light ups out of season

Once Friday rolled around, we had to be at the hospital early, in preparation for the PET scan. They routinely sedate children for PET scans to keep them still and Caelan couldn’t eat past midnight. At that time, she also had to restrict her carbohydrates and activity level the day before. Apparently, they don’t do carbohydrate restriction anymore, but for her first and maybe even her second scan we did.

Why? Because they inject a sugar solution loaded with a radioactive tracer into the bloodstream and cancer loves to suck that shit up. If you starve cells of sugar, they soak it up like a sponge once it’s reintroduced, especially piggish cancer cells (Lea did the ketogenic diet during her lung cancer journey, in her case it didn’t do as much as we’d hoped. I will continue her story soon.). On a PET scan, cancer can light up like a proverbial Christmas tree, indicating its whereabouts because of the tracer uptake from the sugar solution. You do not want to see your PET scan light up like the Rockefeller Center Christmas Tree because that could mean trouble.

This scan has been used to help determine the extent of cancer and what organs are affected and was used to ‘stage’ Caelan’s cancer (it does have its limitations though, as you’ll see). And that my friends, is the magic of this scan. Ta-da. Radiation is fun.

The imaging department we were referred to is mainly adult oriented, as most of them are because kids aren’t supposed to be sick (or so they think), so they don’t have a ton of experience in dealing with kids. If you have a child who requires any kind of imaging, and it’s at a place where they infrequently see children, I recommend asking for someone who has experience with children. Why? Because during Caelan’s venture through the rhubarb, we had to deal with some cold and seemingly uncaring individuals. Please speak up and be an advocate.

Again, I am not complaining. I’m saying that my daughter (all of us really) has been forever changed by some of her encounters and I don’t expect that it will ever go away. I understand that it’s a job, but if someone is incapable of any compassion or empathy, may I suggest that they seek different employment or don’t deal with those who require it. Some people don’t care for the compassionate type, but many do. I’m not trying to be rude, but actions speak louder than words and can inflict some major lifelong damage.

Denial is a common theme, and I am sharing because I feel very strongly that some of this needs to be addressed. Change is good, positive change that improves lives and society as a whole, even better. It’s the little things, truly. I get it, I see these folks feeling that they’re overworked, underpaid and have no say on top of everything else I’ve witnessed and I feel that all of this shit, including the bureaucracy, needs to change. It shouldn’t have ever got to this point, sad world we live in. Cut the bullshit and fix it.

Caelan needed an intravenous line and although she’d had one for surgery, they placed it while she was under anesthetic. We acknowledged early on that Caelan was going to be subjected to many different procedures and we knew we needed to be proactive to try and minimize the trauma she’d experience on our own accord. Some hospital staff will try and help with this and many will not, so that’s where an advocate is absolutely necessary (more coming on that later).

Any time Caelan had to be poked, we asked for a ‘numbing’ cream called Maxilene. It’s a topical anesthetic and needs to be applied 30 minutes before a procedure. Sometimes we applied it before we got to the hospital (we asked for a prescription) if we didn’t think there was enough time for it to work, prior to. We made every attempt to be proactive, especially in preparing her in advance as to what was about to happen. I think it made a world of difference to be honest.

Cooperation beyond cooperation

Caelan was extremely cooperative and nearly every time she had something done, it was pointed out how amazing she was. We’d seen many other children in the hospital over time, (and just because she’s my kid, it doesn’t mean that I’m saying it because of that) but she was extremely cooperative. She never cried, kicked, screamed or anything when approached or had shit done, except for when she had stitches removed (it didn’t feel very good when they were pulled and she was rightfully afraid, but she managed to get through it). In times where I (or any adult really) would’ve got up and walked away (there were quite a few of those moments), she stuck it out. For a 6 year old, that’s pretty amazing.

When you have a chronic disease or illness, there can be a lot of poking, pain and discomfort from diagnosis to treatment. Lea often said that she got sick of it and after a while, the things that she didn’t find distressing or painful before, did become just that. That doesn’t mean that someone is weak and I wish that others would understand this and put themselves in a patient’s shoes. People get worn down over time after running the gauntlet, have compassion for them, please.

We’ve always tried to educate ourselves as to what was possibly coming, so we could do everything we could to try and lessen the severity, but there were times when it amounted to something much bigger than it was. Communication within the medical setting needs HUGE improvement. Knowing is better than not knowing in my opinion and we’d been left to our own devices to research and figure out how things were going to be carried out, often finding that what we’d read was completely different. All I’m asking for, is honesty and transparency. I feel that much of the trauma we’ve experienced, could’ve been lessened with open communication.

We managed to apply the Maxilene cream prior to the IV placement, but the size of the needle that they had to use was quite large for a child and was still painful, especially where it was placed. Trying to start an IV in a child, can be a challenge apparently, and I’ve witnessed many a struggle. I’ve been met with abject denial from many who’ve struggled, insisting that it wasn’t, and others who’d agree wholeheartedly. Caelan’s veins were often difficult to find and stick, and this became painful for not only her, but for me also.

I’m certain that anyone with similar experiences, knows what it’s like to have someone gouging and digging around in your arm, fishing for a vein for 15 minutes or more. Fun. And if you’ve never experienced it, especially as a child, I can tell you that it’s not pleasant. Caelan’s been nothing but a trooper for all the shit she’s been through when getting stuck with these shitty things. Again, where’s the ingenuity?

Kick the tires and light the fires

The technologist (I’m not certain what her exact title was, so I apologize and mean no disrespect) that we had was beyond amazing, and we are thankful we had her. She was very kind and compassionate throughout the whole process, despite having issues getting the IV placed. She tried to give Caelan the breaks she needed to get through and I think she needed them as well.

I’m certain healthcare workers experience much of the same trauma that patients do. I don’t think they enjoy inflicting pain, there are some that make me wonder, but for the most part I don’t think they do. There were a few nurses that I witnessed who appeared distressed over causing Caelan pain and I felt bad they had to endure that. I can understand why some turn cold but I also can’t get over why the people that use these items on the daily, aren’t included in the developmental process of the tools they use. Just a thought.

Once the tech got the IV going, she injected Caelan with the radioactive shit. Now, when you have that injected into your body, others have to stand behind a portable, thick, heavy shield (it’s basically a wall on wheels) of sorts for protection. They kept Caelan in a curtained off area watching a portable DVD player while awaiting the 45 minutes to elapse before doing the actual scan, and we had to stand outside of it and behind the ‘ray guard’ as I call it. This shit is no joke. I’ll be honest, there were days when my kids were little that I would’ve paid dearly to have my children on the other side of a thick, heavy shielded wall for 30 minutes, but I sure didn’t feel that way that day. Funny how that works.

It makes me nervous that my kid has had a couple of these radioactive scans, and also that we were around that stuff ourselves. The staff in that unit have to wear an item that measures their exposure each day, which really makes me question just what the hell we’re doing to people. I seriously hope that we do not end up sick because of it down the road. Especially when they allowed me to sit with Caelan one time for nearly an hour without the ‘ray guard’ prior to the scan (I think she was behind the shield maybe 30 minutes before this, but still). I’d probably light one of those puppies up without even being injected!

Snitches get stitches

We’d contacted the surgeon the day before, and after speaking with Caelan, we decided to ask and see if they could put sutures in the one side of her surgical incision to close it while she was under for her scan. We were tired of the daily trips, the constant seepage (which freaked her out), and the ripping episodes. The surgeon acknowledged that she was going to have a scar and had been trying to minimize it (we appreciated his concern immensely), but we felt that leaving it open was causing more harm than good.

The 3 of us (Clem, myself and Caelan) were in agreement that it would be better for her, not only mentally but physically as well, to be able to have a normal day at home without the 5 ring circus before we really had to jump into a 5 ring circus. Enough was enough. We spoke to our tech to let her know what was going on, and to see if the surgeon had left any details about the ‘who, what, when, where, why and how’ this was all going to happen before Caelan awoke. Apparently, he was sending a resident to take care of it but when they couldn’t track him down, the anxiety really began to spike.

When the time came for the scan, no one knew what was going on because the resident was nowhere to be found and they couldn’t wait any longer. So, it was on with the show. After they got her settled and knocked out cold, the anesthesiologist promised that he’d ensure that Caelan would remain sleeping until the resident placed the sutures, as the scan only took about 10 minutes. Time began to tick away with no sign of the resident.

While sitting in the waiting area, I was extra anxious because I didn’t want them stitching while she was awake. Again, waiting is hard and I really despise it. We hated not being with Caelan. We were only a few feet away from her but it felt like we were worlds apart. All we wanted to do was be with her through everything so she didn’t have to face it alone. So close, yet so far.

After they rolled Caelan into the recovery area, the resident finally arrived. Apparently he didn’t make a good impression with our tech, but he got the job done. We were relieved that everything went well and that the anesthesiologist and our tech went above and beyond in advocating for our daughter (we are and were grateful). Once we were allowed to see her, we noticed that they had jammed a new IV line into the sensitive area on the underside of her forearm, right in the middle of it. Ouch.

The tech saw it and apologized. She thought she’d put in the correct size but I think (after being through this a few times) the line didn’t stay in the vein because of it being in the bend of her arm. Not her fault at all. The new one was removed as soon as possible because it was painful and if I remember correctly, the original was still in place and had to be removed too. The original was covered in medical tape, so more ripping and pulling was enjoyed by all, especially when the tape also pulled on the fully inserted IV. That tape and I, we have a real love/hate relationship now if you know what I mean. Fun times.

Hoping for a normal weekend

Caelan woke without any issue, the lines were removed and we were on our way home after being in the hospital for most of the day, again. Caelan was a brand new kid. 2 or 3 stitches made a world of difference and she rebounded quickly. All we could do now was wait for the results and hope that she wasn’t riddled with cancer. I’d planned on trying to have a laid back weekend before the shit hit the fan because we desperately needed it.

Despite sleep evading me each night, I decided to delve into researching everything I could about pediatric cancer, particularly Lymphoma. After reading, I’d learned that most kids are stage 3 to 4 when diagnosed and I worried that Caelan was going to light up like a Christmas tree. As they say, hindsight is 20/20.

I realized that there were some signs of cancer all along, and that made me think it could’ve been widespread. Looking back, she’d been unable to shake what I thought was possibly a chest cold (Lola had it and got over it, but not Caelan), she had a little bit of a ‘wheeze’ when she drew in a deep breath, was exhausted and napping sometimes for 3 or 4 hours (she’d sleep heavily both at night and while napping) during the day (it wasn’t every day) and just generally looked tired.

Fever? Maybe on and off, I wasn’t checking because she didn’t seem feverish or ill. When I did, she may have had an elevated (not feverish) temperature from time to time but nothing to write home about that was sustaining. Weight loss? Again, I wasn’t weighing and measuring my kids daily, they’re not fish. Still, none of it was really normal for a 6 year old.

Even for my sister, the way society (modern medicine included) ‘thinks’ we should be or look or whatever, may actually have been concealing her cancer, long before her diagnosis.

That said, we’d been going hard with all of the extracurricular activities, family obligations and everything else classified as ‘normal, North American family life’. Hectic is the name of the game, and it’s like there’s some sort of pride we’re supposed to take in never having down time. Never feigning exhaustion despite the frenzied chaos is completely ridiculous and we no longer want to live our life that way. It’s not easy when your kids want to join things but it doesn’t fit into the life we want to enjoy. We’re struggling with what to do about that right now actually.

I just don’t feel that it’s good to be that busy. At the time, I couldn’t tell if it was simply exhaustion or something more sinister, scary what this world has come to. Even for my sister, the way society (modern medicine included) ‘thinks’ we should be or look or whatever, may actually have been concealing her cancer, long before her diagnosis. I will definitely write about this topic more, but when you think about how much we attempt to ‘manipulate’ ourselves to fit into a ‘one size or one way is only acceptable’ mold in society, we may be ignoring our built in warning signs that keep us alive.

By the time we got home, it was early afternoon and Clem was trying to catch up on work. We noticed a call from our pediatrician’s office and called them back immediately, even though they’d left no message. We were told that the pediatrician would call us after he’d wrapped up his clinic for the day. I managed to convince my parents to go home, promising to call if we needed them if anything else came up. I assured them that we’d have no news until the following week.

It was Friday afternoon after all, and really, who’d be giving any news that late before the weekend? Apparently, the world doesn’t stop because it’s a Friday, joke’s on me! It’s years later, and I still feel like the biggest ass.

When the phone rang around 4:30 p.m. and the pediatrician’s number came up, my heart started pounding so hard that I thought it was going to burst out of my chest. Imagine that, news is delivered late on Friday afternoons.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s