Wednesday, September 23, 2015

what if you knew...


...that tomorrow everything was going to change. Your little world was about to be turned upside down. Would you live today definitely? Of course we would. If we knew bad things were headed our way, we would do whatever possible to stop them. And if that wasn't an option, we'd embrace all that was good in our lives. There's no doubt in my mind that we all taken life for granted. And for most of us, it takes a life changing event to put us in check. For me, it was cancer. It took my 5 year old daughter being diagnosed with stage 4 metastatic Wilms Tumor. 

I've had this post in mind for awhile, but I can't get the words out right. I'm not a writer, I'm barely good with punctuation and grammar. Math is my subject. My apologies in advance. 

I wanted to write about scans, the anxiety that comes with waiting, and then what happens next. Then I get off on a tangent about something else and that leads to another topic. Before you know it this little update turned in a novel. Kind of like this paragraph. So while it might seem scattered, the bulk of the post is well written and to the point. Maybe. Okay probably not. Shit. 


Cancer is an ass. There's no classy way to describe it. Everyone will say how much they "hate" cancer, or that it "sucks." Clearly, no one in their right mind would wish cancer upon someone, especially an innocent child. I would never wish harm or pain on anyone, whether it be from cancer or some other debilitating disease or illness. Cancer isn't the only disease that kills children. I'm not blind to the suffering that millions endure daily. Mothers and fathers that watch as their babies cling to life or siblings that cry out because they've lost their best friend. Their sister or brother, the one who has lived life with them. It's painful to see and hear about. Unfortunately, it's happening everyday and its devastating. 


Every 3 months Bailey has scans. It's usually broken up over two days, because adding that extra day of wait and worry is every parent's dream. Anyway, 24 hours prior she starts a steroid. This hasn't always been the case, but one day, after almost 3 years of scans, B had an allergic reaction to the contrast. Her body started itching and little hives popped up around her neck and face. We felt so bad, I mean she's strapped down to a table, unable to move, and she's itching. I know there's worse things in life, but it was uncomfortable and brought her to tears. 

(Why is contrast used? Contrast is used to make specific organs, blood vessels stand out. Create images that better show the presence of disease.)

So the steroid is taken to help prevent or minimize the allergic reaction. It's worked so far, but I wonder if that was an isolated event. It doesn't matter, from here on out she'll be labeled. This girl can't catch a break. 

Appointments usually start early, triage around 8am. Here she has labs, pretty simple. However, now that her line is out, they have to place an iv. Thankfully, there's numbing cream to take away that sting. She'll keep that the rest of the day. 

She drinks oral contrast starting 4 hours before the scan. Have you ever had to drink this? It's gross, not terrible, but it taste like metal. On an empty stomach (because you fast before scans) it's rough. Around 10am she'll be called back to nuclear medicine. They monitor her for an hour and then inject her with a tracer for the PET scan. If you are pregnant, you are asked to leave once this happens. So I'm injecting my daughter with a substance that's potentially harmful to an unborn baby. Last year, when I was pregnant with Davis, I had to leave her at this point. Some days she was okay, other days she screamed out. She just wanted her mommy, the person who was always there. It was just another thing to add to my "it's not fair list." You have one right? I'm sure you say it daily. But, life's not fair. That's a crock of shit. Please don't ever use that as a reason my daughter has cancer. 

You sit for another hour after the injection, then she heads to her CT scan. It's quick, the whole procedure lasts 15-20 minutes. We've been told that Bailey is one of their favorite patients. She hops on that table and does what she's told. No fuss. Doesn't surprise me.

After CT, they wheel her next door to have her PET scan. Now this one is a little longer. I usually walk around, grab a cup of a coffee (by this time I'm starving, B can't eat so I don't eat either), and catch up on the exciting drama that comes with social media. 

Scans are done, so we head home. It's been a long day. Anxiety only adds to my exhaustion. It's not necessarily physically exhaustion, but just this journey in general. Some days are harder than others, but I'm so over cancer and chemo and surgery and watching kids die. I've been to more funerals for children than anyone should. In fact, more children than adults. That's sad. I'm just ready to wake up and this be over. But, I know that's not going to happen. 

Tomorrow will be a new day. One filled with beauty and love, but also, uncertainty and fear. I know that I can be told one of two things. My daughter remains cancer free or she's relapsed, yet again. If this happens we know treatment options are scarce. In fact, only clinical trials, if any are open. 

As evening approaches all I can think about is going to sleep. If I can get to sleep, tomorrow will come and everything will be okay. I mean Bailey looks amazing. She's having the time of her life and honestly she deserves every ounce of happiness. She started school for the first time in her life, at 8 years old, jumped into 3rd grade like it was her job. Three weeks into school the kids were tested, Bailey ranks above 90% of kids her age/grade nationally, is at a 5th grade (3 months into the year) level and is best suited for 4th grade material. She made the percussion team and joined the chess club within a month of school. Currently, she's being tested for the gifted and talented program. Hot damn. This girl is on fire and cancer can take a back seat. But will it, will her scans show no disease? I mean that haven't always in the past, what makes now any different.

I'm sure I seem pessimistic. Honestly, I am on most days. It's not that I want to be negative, but I 'm realistic about pretty much everything. I don't believe in miracles. The statement, "everything happens for a reason," annoys the crap out of me. No shit it does, you pick a scab it bleeds. You run a red light, you cause an accident. It's not rocket science here. There's no logical reason on this planet that makes my daughter getting cancer okay. I love all the friends we've made and places we've been, but I would trade you all in. I know they would say the same. I also do not believe this is part of some bigger plan. Again, no plan is better that your child living a healthy happy life. No plan makes it acceptable to watch your child go through the torture of chemotherapy, radiation, surgery, procedures and side effects that go hand in hand with a cancer diagnosis. It may offer comfort to some, however, I am not one of those people. And honestly, we shouldn't assume that it does either. What is comforting and offers peace for you, could cause great pain and stress for someone else. We should all be more considerate. I'm not excluded from this statement. I'm human. 

As we wait for the doctor to arrive, my nerves are getting the best of me. I literally sit there and think of every possible outcome. In the 5 minutes, I can play out my reaction and life for the next 3 months, both for good and bad scans. Bailey will go back to school the next day, continue kicking ass, we'll get ready for the holidays, birthdays, take mini vacations and just be normal. Whatever normal is these days. Her hair will continue to grow those adorable curls she hates so much. Or there's the other scenario. The one where I immediately start planning her funeral. What would everyone wear, where would it be? Would someone sing, no slide show I don't like those, definitely pictures and flowers, this isn't a wedding, that's right she'll never have a wedding. How morbid and depressing is that? But it happens, more often than not. I know I'm not the only mother who thinks this way. I can't control how I process information. I wish I could. So I take my Xanax. It helps. Not the negative thoughts or how I react, or process information or the outcome. It just helps me not flip the f out. I'm not crazy, I promise. I'm just a mother on edge and constantly ready to throat punch cancer. 

The Dr finally comes in and the first he said was, "so she just had a CT right?" I said, "NO, PET too, like always." 

Are you kidding me??? Now we have to wait longer, ahhhhhhhh. What if the CT was good, but the PET wasn't? If I had anything to eat, it would have made it's way right on up. Yep enjoy that visual. 

B's NP and nurse come in and then the doctor comes back. For the record, I adore her Dr, he's amazing, but needs to stay busy all the time. He goes, goes, goes and really pures his whole heart into his job. He's a keeper. Anyway, the first thing they ask is how we've been. Let me summarize how the last 2 relapses went.

May 2013 - "Look at you, you are beautiful. You look fabulous. How have you been?" Lots of smiles and laughs. In the back of my mind this means scans were great. Then he says, "Okay we need to talk." The tears just started flowing, uncontrollably. 

July 2014 - "B look at you! How was the cruise? What's new, what have you been up too? You look beautiful!!!" Bailey told them I was expecting a baby and that it was my 31st birthday. She's so sweet, lol. Then it happens again, "come with me, I want to show you something." I just start shaking my head and saying, "are you kidding me?" 

Okay so let's go back to yesterday. I've come to the conclusion that you can't read them. They aren't going to walk in bawling hysterically. The first thing they ask has been and always will be, "how have you been?" But, I would like to just skip all the small talk and get to the real reason we're here. Then we can talk about how freaking adorable her curly hair is and that she's basically a genius.

Like most things in life, I can't control how the conversation plays out. And that's probably for the best, lol. I know this much about myself. 

Going into these scans I felt like she was going to be okay. I honestly thought the scans would be clear and that we would head back in December. Not only because she "looks good," but because she feels good. As she's gotten old, she's been able to explain in greater detail how she feels. Plus, she has too much good going for her right now, all of us do. We were 10 months out from her transplant, it was the furthest off therapy she's been in the last 3 years. This new normal was weird, but I loved it. 

Thankfully, cancer felt the same way. There was no evidence of disease on Bailey's scans. We will return in December, if these scans show the same, she will be ONE YEAR off therapy. This is a milestone we've been waiting for. 






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