Birthday Wishes and Butterfly Kisses

We have been busy preparing to celebrate another birthday in our crazy little family soon! Our not so little Caelan will be another year older, and we are very thankful to be celebrating with her.  We cherish every single birthday around here because you just don’t know how many you’re going to get.  So, light the whole cake on fire, try and blow it out and enjoy a slice covered in ice cream to hide all of the charcoal!! Time to party!!

I guess it’s the perfect time to introduce my youngest daughter, Caelan. Where do I begin with this one LOL? Caelan is a feisty, intelligent and thoughtful young lady, who is wise beyond her years.  I love her quirky come backs and deep belly laughs. The other day she made a smart ass comment, but it didn’t quite come out the way she had intended.  She smirked at me and said that it sounded much funnier in her head.  I had to laugh because she’s so much like Clem, but I see a lot of me in her as well.

To see her now, you wouldn’t believe she had cancer just over 3 years ago.  The only visual clue would be the scar above her collar bone from her biopsy, or the scar on the inside of her arm from a PICC line. Even then, those have been fading with time.  It feels like a lifetime ago, but the thoughts and feelings are still very much present.  With Lea being diagnosed only two months after Caelan was pronounced cancer free, we’ve never truly had the opportunity to deal with everything we went through.  That’s probably why it’s hitting us so hard now.

Caelan was around 6 and a half years old when she found the lump near her collar bone.  We hadn’t even noticed it.  She pointed it out to us at bedtime one evening and said that she had sustained an injury from a player’s stick during one of the games at our tournament. It was nestled in the area of the neck where it meets the shoulder, not the sort of place I think it’d be common to injure. She also didn’t complain that it was sore. The instant I saw it, I had that vile, deep down in the pit of your stomach feeling that it was something very ominous. That was the last somewhat ‘normal’ day I would remember having for the next couple of years.

Caelan had been exhausted and was struggling to get over a bad cold, that Lola had had, but rid herself of within an acceptable amount of time. She didn’t seem to have a fever or be losing weight, so I just attributed it to not enough rest.  Caelan was my healthier child by far, despite having horrible reflux (right from birth), constipation issues (again, right from birth despite being breastfed) which eventually lead to a nasty urinary tract infection around 3 years old that required two rounds of antibiotics. She also surprised us with the pleasant experience of full body hives, full body swelling and of course itching that flew in from out of nowhere around 18 months. I know, I know, she sounds like she was my sicker kid because she had the more prominent stuff, but she was quite healthy. She would get colds, promptly recover and would rarely seem bothered if sick.  Lola, was the opposite.  She’d get the full on fevers and sore throats and other lovely bugs and take some time to recover…like all winter to recover.  I think it was also because she is and continues to be my worst sleeper LOL! 

Admittedly, we had been going very steady with the kids at the time, and were completely out of gas. I think most families with kids can attest to the busy chaos that this lifestyle brings.  We were running a program that included doing all of the coaching on top of all of the organizing, without any help. In addition to this, we also had the usual day to day grind with other volunteer activities, work, and anything else you can think of thrown into the mix as well. Way too busy for my liking. We had just wrapped up our program, and were excited to finally have some down time as a family. We had been desperately counting down the days to our freedom for a few months.

Anyway, back to Caelan. Of course, in usual parenting fashion, we called the pediatrician the very next day to seek advice.  The nurse told us that enlarged lymph nodes were very common and that it could be weeks before it would subside (we knew this already, but the supraclavicular location [above the collar bone] was what spooked us).  We were instructed to keep a watchful eye for the week and to call after that if there were still concerns. At the time, we felt somewhat comfortable with her advice, but I still had that bad feeling.  I immediately set out to try and gain some understanding about this lump, only to discover that the area it had presented, wasn’t common.  Cancer and a very short list of other possibilities, despite being likely, were on that same list. We ended up calling the clinic once the week was up, as that lump was still there.

At this moment in our lives, my grandmother, who had been generally very well, shockingly ended up in the ICU on a ventilator with an unidentified illness. They flew her into a major hospital about an hour’s drive from Clem and I. With my aunt being two years older than me, I spent much of my time with her at my grandparents’ farm while I was growing up. My grandmother was like another mom, and needless to say, she and I were very close. I swear the world stopped for me in that week.  I couldn’t stop thinking about the ominous lump on my daughter’s neck while trying to deal with what was going on with my grandmother.  It was unbelievable that so many things could go so wrong all at the same time.

Clem volunteered to take Caelan to her appointment to see the pediatrician, I believe it was on a Monday, the same day we called.  He sent me to the hospital to see my grandmother that morning, who was still in the ICU in a medically induced coma. We weren’t getting much news about her future outcome, no one knew if she was going to make it, so I wanted to spend what time I could with her.  Anyway, Clem called me after the appointment and said that they took a chest x-ray and did some blood work. It was also decided that Caelan was going to get an ultrasound.  I figured that we would get some answers with the ultrasound, and tried to calm my swarming exhausted brain.  To say that I was worried was a complete understatement.  In hindsight, it shouldn’t have been a surprise that the ultrasound was booked for Wednesday, only two days later, at the children’s hospital.  I was starting to freak out a little, if it was nothing serious, we wouldn’t have been in that quick.  Obviously, something was up.

On that Wednesday, Clem again, sent me off to see my grandmother while he took Caelan to the ultrasound.  I still kick myself for not going with them.  I felt so torn in that moment and now, in hindsight, having to deal with the decision I made, sometimes still tears me apart.  Clem finally called me after the ultrasound, which felt like an eternity. I was nervously waiting for my phone to ring the whole time.  I remember that I was in the cafeteria with my aunt and two younger cousins when he finally called.  He said that they did the ultrasound with the tech, followed by someone else of higher academia who was summoned.  They told him that they couldn’t say for certain what it was, but that they recommended we just have it removed and not have to worry about it ever again.  That, in context, is what they basically told Clem.  I called bullshit, and knew it must be something serious and that’s when the panic set in.  I didn’t want my child to have to have surgery.  Call me old school, but avoiding surgery is my first priority and after having gone through the fertility gamut, I feel they throw this option out much too often….more on that opinion later.  I decided to leave the hospital and go home.  I was completely numb, aside from the fear that was growing inside me. 

I remember very clearly the phone call around 4 that afternoon from the pediatrician. I will never forget it.  Clem and I went to our room, shut and locked the door and put him on speaker.  I never really saw eye to eye with him, but I have to say, I respect him for the decency and compassion he extended us that day.  He told us that he was taking a week’s holiday and that he wasn’t going to be in for the rest of the week and for half of the next.  He said that he didn’t want to wait until he got back, and wanted our permission to send a letter of referral to a pediatric oncologist and a surgeon immediately.  He told us that although Caelan’s blood work was just outside the top end of normal regarding her LDH and ESR levels, her ultrasound was ruled inconclusive which lead him to believe that she had cancer, until proven otherwise. 

I asked if he was certain and what he would do, and he replied that he would send the letter immediately.  He’d admitted to having a case that he waited on too long before, and wasn’t messing around (he gave no details as to who it could even be, so please don’t jump on him for being honest with us).  Thank goodness he learned from that situation and applied his knowledge accordingly.  I would later learn, that most pediatricians never see a case of pediatric cancer in their lifetime, which is why most children are diagnosed at stage 3 or 4.  I’m not sure if that still holds true, especially since it seems that pediatric cancer is on the rise, but I was thankful our pediatrician had.

I was in complete shock. I was numb and I swear my body had a weird hum coursing through it, I was probably shaking.  I didn’t know if I wanted to scream and cry or pinch myself, just to feel something or something else in that moment. I was in a panic with everything flying through my head and all I could feel was confusion and fear.  The one thought that sticks out in my mind at that moment was, I am going to lose my beautiful daughter. What’s weird, is that I saw my daughter and felt it wasn’t real, she didn’t look like she was dying or even ill enough. I wanted to tell the pediatrician he was wrong, it had to be something else. The bargaining I was doing in my head was astounding. You’d do anything to not hear those words, anything.

It’s eerie that I am reliving this feeling with absolute clarity as I write.  I don’t like it at all and I think I hate the fact that I even know and understand what it feels like.  There are days that I’d give anything not to know this.  Sadly, I had this feeling often and it has become very familiar to me. It’s ugly and exhausting but it also reiterates what’s important in my life now. Any time I have these feelings, I think about how lucky we are and wonder where we’d be if things had been different. I know for certain that we wouldn’t be who we are right now and just accept what is and will keep moving forward.

What happened next, may or may not be what others would find acceptable for young children dealing with this diagnosis. I think, for our family, the way that we handled our situation helped us get through and set the stage for the new life we live now. I am going leave Caelan’s story here for the time being, and I am going leave Caelan’s story here for the time being, and just reflect appreciatively about how much I love my little family and this gift we call life.

Without further ado, happiest of happy birthdays Caelan! You are the ultimate superhero, proving that one can face some of the worst in the world and do it with grace, courage, compassion, empathy, humor and dignity, all while fighting dirty. You’ve inspired me in ways I look forward to explaining, when you’re old enough to fully understand. I wish you many many more happy and healthy birthdays in the years to come and hope your special day is one you’ll never forget…I love you infinity my beautiful girl!