It’s only one of my crusty old steak knives! I don’t own a scalpel, so my apologies! Cute bear though, I think I’ll call him Hack Job Harry with that outfit! I know, I know, not a favorite topic to read about, but this moment in time changed everything for me. I can only hope to demystify this disease by sharing my experience. Hang on to your hats!
Cancer is a formidable and worthy opponent. It is a thief in many instances, but if you’re willing or accepting, it can be a teacher of many things as well. Some call their walk with this beast a journey, and others prefer to lock horns with it and call it a battle. In the end, it’s each individual’s decision on how to approach it. Some days are a choice, with the option of combining multiple techniques, but for many others at some point, there’s no choice but to fight or accept what is.
No matter what, every single story is unique and deserves humbled respect. To the many out there living each day with their opponent and to the countless others who’ve succumbed, my heart is with you. May we all support one another in our journeys and battles, and may we all hope for and celebrate each other’s triumphs, no matter the size.
I am passionate. Passionate to the point of detriment sometimes. I wanted to share this snippet of my life before moving forward because I’ve learned so many things in such a short amount of time and have stories that I truly want to share from it. However, without the backstory behind these off-shooting stories, the understanding of the magnitude it had in my life is nonexistent. With that, here is my daughter’s story.
I don’t know if any of us slept, ate or lived much in the days that followed the phone call from our pediatrician, but they passed us by anyway. Looking back, I feel like a fool. I thought that the hardest battles (infertility) I’d ever fight in life were behind us and never expected this. Isn’t life funny?
5 days after that fateful phone call, we were at the Children’s Hospital, waiting for our appointment with a surgeon. We’d been there all of one time before, for supposed flat warts that had eventually disappeared on Lola’s face years prior, nothing serious. Sitting in the waiting room amplified the fear humming through my otherwise emotionally numb body. Hyperventilating? Not likely, more like true oxygen deprivation from a lack of breathing.
I remember looking at the other children and their families sitting there, wondering if any were in the same boat as us. None of them truly looked fearful and that’s when it started to hit me how alone we could possibly be and how our life was about to change. Envy. I envied them. The fear spiked when Caelan’s name was eventually called.
A quirky surgeon and a worst case scenario
We waited for a few minutes before the surgeon breezed through the door. He looked through his file, at images on his computer, asked a few questions, looked Caelan over quickly, acknowledged she’s good for some reason and then sat down. What he said next, hit me like a shit covered, rolling boulder, from the top of a mountain the size of Everest. I expected bad news, but maybe it was the delivery that knocked the wind out of me, not certain. He basically didn’t sugar coat it. He said,
“This is the absolute, worst case scenario.”
I’m just going to say it right now, I appreciate his honesty. He didn’t sugar coat shit nor be deceptive. Wherever he is, I hope he knows I’m grateful.
I’ve heard that surgeons are a unique bunch, and this one seemed a bit quirky. Nice, but different. He startled us by suddenly spitting the next steps out in an urgent manner, saying that he was admitting her immediately for surgery the next morning for a biopsy, complete with a bone marrow biopsy, port placement, and PET scan. Jeepers. My head was spinning as he was crazily throwing everything out, including the cat and the kitchen sink. He was basically saying that it was definitely cancer.
He suddenly stopped, looked at Caelan and asked if she could breathe, to which she terrifyingly squeaked out yes (Burkitt Lymphoma can become emergent quickly, as it’s very aggressive and fast growing and can cut off the supply of oxygen if swelling in the neck occurs rapidly, apparently). That’s my guess as to why he was so antsy, he thought it was Burkitt. He sort of settled down for a second before starting back into his mania.
He gets up and says he needs to talk to oncology. Before we knew it, he was out the door, hollering at his front desk to get people mobilized which suddenly included 4 people running around while he fumbled as fast as he could. He was typing up a referral letter (think rapid and intense single index finger typing, I call it Hunter, Pecker, Search and Destroyer typing), while talking to an oncologist on the phone that was jammed between his cheek and shoulder, while directing his staff, all at the same time. His entire office came to a complete halt. Suddenly, everyone within the vicinity, stopped to look at us.
Within a moment, we had a nurse fighting with a new kind of thermometer they had just started using, who was desperately trying to get a temperature reading on Caelan. As she kept apologizing and fumbling, I noticed that her hands were a little shaky. I saw the people that were lined up at the front desk watching the commotion, trying to peek around the semi-ajar door to see who the fuss was about. It felt like forever.
You can’t run and you can’t hide
People were watching us with wide, sad eyes while the panic swirled around us. I’d have given my left nut, right nut and twig if I’d had one, to trade places with anyone else there. Sadly, I had nothing to trade and I highly doubt anyone would have. Clem felt his weren’t worthy of trading at the time! Ah Clem, you make me laugh! Anyway, enough nut talk…
The surgeon eventually handed us his warm, freshly printed letter that he’d hurriedly signed and stuffed into an unsealed envelope before calling a nurse to escort us to the oncology ward. He wished us the best and off we went, past all of the people who stood by gawking at us while backing away like we had the worst case of cooties or something…well, we kind of did, now that I think of it. We were in complete shock. I walked out of the surgeon’s waiting room area with my head down and Caelan’s hand firmly clutched within mine. She was terrified and I desperately tried to avoid connecting with the eyes that were locked on us.
The nurse that became our escort, tried to refocus our attention with small talk, once we got out of the area and into an elevator. She was very soft spoken and asked if we’d been to the hospital before, and if we knew how to navigate it. We said we weren’t familiar but she assured us that we’d get the hang of it in no time, as in, we were about to become frequent flyers.
After getting off of the elevator and moving at a near running pace, we arrived after a few twists and turns at the Pediatric Oncology Clinic. We walked into an empty waiting area and the nurse told us to have a seat. After having run the gamut, I can honestly say, that was the most quiet we’d ever seen the place. Probably because it was basically closing time for them. The receptionist came out from the back area and the nurse handed her the paperwork and left. It wasn’t long before we were put into one of the exam rooms, awaiting yet another professional.
A whole new world
I believe we were there for about 2 hours. I’d completely lost track of time. After the surgeon started in on admitting Caelan and going off on a tangent, explaining that she most definitely had cancer, I’d lost all thought from there. I don’t remember much of those 2 hours in the oncology clinic, other than being told that it wasn’t confirmed as cancer yet and having to answer a very long list of questions that the oncologist had on her intake form.
Caelan had blood work done, and we were told to expect a call for a needle biopsy of her neck. I did ask, due to what I’d read, that it was for sure a needle biopsy (still hoping Caelan wouldn’t need to have surgery) and them confirming that yes, that’s how they were going to biopsy the lump on her neck. I knew better, but the oncologist insisted she was correct.
We left the clinic in a complete haze with our heads filled with uncertainty and worry for our youngest daughter. We had an hour of driving to do before we’d get home to our safe place where we could process. To say it was a quiet ride, is grossly understated. We knew what we were dealing with and now we just needed to find out how bad. The fear of the unknown had completely overtaken me.
If you are unfamiliar with pediatric cancer, most cases are usually found in the later stages of the disease. Most pediatricians won’t encounter a case during their practice which usually leads to a delay in diagnosis, as my previous post sort of explained. The fact that ours had encountered a case previously, was an unexpected advantage. Who knows how long we would’ve waited before having an answer, but things seemed to move very quickly after our visit that day.
A new reality beginning to form
I remember Clem and I sitting together in the evenings, after the girls had gone to bed, talking about losing Caelan, what might happen and many discussions about the things we hadn’t yet experienced with our girls. Millions of thoughts rushed through our heads about different scenarios and possibilities. The unknown really added to the story lines of the possible future that lie ahead.
I couldn’t sleep, didn’t feel like eating, and was consumed with trying to find information to prepare myself and to help figure out the possible outcomes. I spent hours educating myself because after everything I’d already gone through navigating the infertility realm, Caelan would need an informed advocate. That was going to be an interesting feat in itself.
We received a call from the oncology unit the day after our appointment, confirming a date and time for Caelan’s open biopsy (surgery) instead of a needle biopsy, not even a week later. I knew they couldn’t do the latter despite trying to confirm what I already knew previously. With that, we began preparing both of our kids for what was about to occur.
I just want to say this, and it’s not because they’re our kids, but our girls were nothing short of amazingly stellar. I know they’re mine and every parent says that, but I felt that they were truly exceptional. Lola had just turned 9 and Caelan was 6. They were very young when this struck our family, and they handled it with a maturity that I still marvel over today.
We handled the situation the best way we knew how. I don’t really know much about how people truly get through their journeys within the realm of pediatric cancer, and I’ll be the first to admit that, but there were times that it made me wonder if the way we chose, was frowned upon. That’s another thing I’ll write about coming up. Looking back, I wouldn’t change a thing.
I admire the brave people who step up and tell the stories, ugly parts and all, about the things they’ve had to do to survive. It goes to show that not everything in life is unicorns and rainbows and that tough decisions are realities, and that they can and do occur. I know it’s hard to sit and listen, but honestly, it’s the only way to be able to relate to what a person has had to endure and to understand how they came to be. It’s worth it.
We may be different, but we’re still human
Before we even began the journey, my children alerted me to the fact that they were very much present and aware of everything that had been going on around them during their young lives. Clem’s uncle, whom we adored and had an immense amount of respect for, had passed away about a year and a half before Caelan’s diagnosis, after succumbing to pancreatic cancer. It took time to get a diagnosis, but we knew he had been sick for a while. It affected my kids greatly.
That was the most recent experience my little ones had at the time with cancer. With that of course, they only really thought of it in terms of absolutes with no grey area in between, which meant that they had already equated it with a death sentence. Truthfully, I’d never actually gone through the process of diagnosis and treatment or anything, so it was all still a complete mystery to me before Caelan.
I’m honest with my kids, except of course for things like Santa and the like, as I’m sure many can relate. I’m also an atheist. Yup, an atheist who believes in Santa…I know what you’re thinking. I just wanted my kids to be kids and enjoy their childhood and I’m just going to leave it at that.
Nothing fancy about us. I have been judged in the past for even saying that I’m an atheist, so I’m bravely going to just put it out there quietly. I believe in compassion and empathy and that humans can do better and much, much more…just to clear the air that I’m not evil or anything ha! Is it working? Don’t answer that!!
I was born and raised in a family of ‘non-believers’, who quite simply have always had extra chairs at our table for anyone in this world, regardless of anything, who has no table to call their own, so to speak. In other words, all are welcome here. I seek to do as much good as I can and can only hope to leave this world a better place, once I’m gone. I could go on, but I think you get the gist of it. I wish no one any harm and try to help anywhere that I can, enough said. Congratulations, you now know me!
We have done some picking and choosing in regards to what we have incorporated into our life, and our kids have been encouraged to do their own exploration into the discovery of their own beliefs. As much as I’d like to believe that there’s another life after this one, I don’t believe there is. A parallel universe….who knows? Will things change over time, I don’t know, I’m only human. I’ve told my kids that they have one life, and to live it to the fullest and appreciate it. Be good and decent human beings, it’s not difficult. I am deeply spiritual in my own way, if that makes any sense, and I see a lot of that in my own children.
Difficult conversations I’ll never forget
I never thought I’d see the day that my daughter, at 6 years old, would be cuddled up with me in her bed every night prior to going to sleep, asking if she would wake up in the morning. I never thought I’d see the day that I’d be having in depth conversations about an afterlife and a belief in God. I never thought I’d see the day that this could even be a possibility due to cancer. I never thought I’d see the day that my child would point blank ask me if she was going to die from this.
These conversations happened every night throughout Caelan’s treatment, Lola included. Clem and I would spend time with both of our girls each night, just allowing them to decompress and ask questions. With each question, the weight that our children felt that they had to bear, became very evident. They were no longer living the lives of carefree children.
All kids inquire about death at some point in their early years, but this was a very real, reality my kids were facing. I didn’t have any answers, and could only listen while holding back my own agony, and asking the girls what they thought, and supporting their answers the best that I could. The only thing I could do, was provide comfort and validation in their affirmations. Other than that, I was completely helpless. No matter what, death can be a scary thing, regardless of the answers provided. We continually asked them to let us shoulder the load, but this was one that they couldn’t easily hand over.
The day had arrived
Surgery day came fast, and we’d prepared our kids as much as we could about everything that we thought would happen. We provided as much care and comfort as we could and constantly reminded them of our love. Our kids seemed fairly confident that things would be alright, despite my gut and sixth sense going off like a relentless fire alarm. I couldn’t believe it had come to this.
Clem and I took Caelan that morning and Lola stayed home with my folks. We allowed her stay with her grandparents because she couldn’t focus on anything else, so school was not in the equation. I remember getting Caelan into her ‘hospital attire’ after our arrival and just waiting. I had so much fear coursing throughout my body that I just couldn’t even focus. I could barely walk and had to rely solely on my will. I had to be strong for my daughter, who actually seemed to be doing alright despite the circumstances. What a trooper.
I have to say, she was beyond cooperative during this entire process, even when she got fed up. We’d always try and prepare her in advance by explaining everything to her and answering all of her questions. We never wanted to scare her, only empower her with the knowledge we’d provide. We’d always try to give her the floor to ask questions at appointments as well and include her in the decision making.
Yes, she was 6, but I think it made all the difference in accepting all of the shit she had to endure. She knew she had no choice, but we’d always try and find a way to make it better or easier for her to add in something she could control. Many may not agree, but as I said before, we did what we felt was best for us.
And so it begins
After waiting a while, we were escorted to a hallway just outside the operating rooms. We were behind another child, and another was waiting behind us. I was beyond nervous at that point and was furiously fighting to keep myself upright. Within a few more minutes, the anesthesiologist came to talk to us about Caelan, funny to think now, but that wasn’t the last time we saw him. After we finished up with him, our surgeon stopped by to chat. We asked if the lump was something he could remove entirely and I believe he said he’d try but warned that the area was a sensitive and complex place to be cutting into. Nothing like reassurance!
A few minutes more, and they came to take Caelan. One of us was allowed to go with her, and Clem desperately felt that he needed to go. I saw the look in his eyes. He was adamant that he was going. There was no point in arguing, that was the look of protection combined with need.
I kissed and hugged the piss out of my daughter, telling her how much I loved her. I was terrified we could lose her at any point. Clem says that he went because if things didn’t go well, he didn’t want my last goodbye to have been in an operating room. I was doing alright up until I wrote that, where’s the Kleenex box…fell into some feelings there, as Lea would always say. Okay, better now, onward we go.
I’m just going to say, the nonchalant attitudes surrounding surgery today, aren’t my cup of tea. It’s still a risk, and one that I feel should be left for the types of circumstances that most definitely require it. I feel that there are too many doctors with overly flippant attitudes in regards to surgery, and it just goes against the grain for me.
Yes, some things have changed over the years, but there’s still room for improvement. I can’t pretend that I haven’t seen the problems within this area. Once you acknowledge them and add them all up, it’s alarming and shouldn’t be ignored. Just my thoughts, especially after seeing what Lea went through. I’m hopeful that things will change.
As Clem walked down the hall beside Caelan’s hospital bed, my mind went completely silent and every other part of me went into overdrive. Within a moment, a single thought popped into my head. This is really happening. Things will never be the same again after this.
I tried not to pace the hall while waiting for Clem to come back. I tried leaning against the wall, but my legs just wanted to give out. I didn’t know if I wanted to cry or just continue feeling that humming numbness combined with astronomical fear. My heart was pounding with anxiety. All I felt was fear. Fear, fear, fear.
I don’t know how long anyone can live like this, but I managed to survive months of it. Did it take a few years off of my life? As Lea once put it, the heart only beats so many times in a person’s life. I think many of mine were used in those first few weeks during diagnosis.