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. 

fresh air

Shortly after my parents left, the holiday passed, and B's ANC continued to improve, we were able to go home. Bailey hadn't been outside in a month, felt the fresh air on her skin. She was very exited to go home, but with this brought new challenges. 

{B, mommy & daddy outside and headed home.}

When these kids are released from the hospital, they are very sick. Their immune system is still completely wiped out and slowly fighting to gain back strength. She was discharged on several medications and TPN. She still wasn't eating solid food and only drinking water occasionally. She kept it in her backpack. It's 24hrs worth of fluid, so it's heavy. I usually carry it as much as I can though, until it's easier for her. 

Because of the chemotherapy, B was going to need blood and platelet transfusion on a regular basis, usually every other day. So while we weren't sleeping at the hospital, we were up there everyday. This became emotionally draining, as I was further in my pregnancy and B needed so much care. I couldn't just pick her up and carry her when she wanted, but I tried. She suffered from separation anxiety as well. B was very quiet and closed off to her family. She spent a lot of time in bed, listening to a show or music. Always alone. It was a challenge for her to re-adjust, she had been confined to a bed and lines (8 at one point) for so long. 

{We had a home nurse visit the first few days. She brought this super cool iv pole for B's fluid bag. It made it much easier to get around.}

I was happy to have her smiling, walking, laughing and just at home though. We made the adjustments she needed and carried on...like always. 

hospitals & holidays

Over the last 3 years, Bailey has spent most of the holidays at St Jude. Whether inpatient, or for chemo, she's been here. Actually, the last 3 years she has been at the hospital for each birthday. St Jude is amazing and they really make the kids feel special on that special day. There's balloons and confetti, singing and laughing. And if you're B, the occasional visit to the hospital gift shop. She may or may not have her doctor wrapped around her little sweet fingers. 

During our stay, Thanksgiving rolled on by. Bailey was so sad. She adores holidays. I mean she doesn't want a single one to feel left out. Whether it's St Patrick's Day, Labor Day, 4th of July...and obviously we go big for Valentine's, Christmas and Halloween. 

My parents were sweet enough to come to town. They made an amazing dinner for our boys and made sure they felt loved. B even let Will stay the night with her, leaving her was heartbreaking. I know she loved having her daddy there, but the amount of medication they kept her on only increased the emotions. I was able to spend a night with my parents and feed myself and Davis a few plates of dinner. 

{Sweet B with her daddy}

{Happy Thanksgiving Sweet Baby Girl}

{Bailey and my mom, her MeMe. I didn't get a picture with her Papaw. He had the sniffles and was extremely worried and concerned for her help. Poor guy. Plus I know just seeing B like this was hard for them. Grandparents ache for more than their grand babies, but their children as well.}

{B enjoying a new iSpy book. She had a love/hate relationship with this activity. Again, I blame the drugs. Poor girl couldn't find something, we'd help, this would make her cry, led into another issue. It could be exhausting at times.}

Overall, spending Thanksgiving in the hospital wasn't so bad. The other thing we really missed was being home with our family. And we knew that day was coming soon. 

she will not break

"And though she be but little, she is fierce." -Shakespeare

I think this is an accurate statement for my sweet B. She's the true definition of a fighter, with a heart of gold and compassion for others. Never once putting herself before others. Anyone who knows B would agree. I'm so proud of her. 

I last talked about mucositis and how painful it was for Bailey. I don't want to continue talking about it, one it's just horrible and thinking about what I allowed to happen to her body is painful. It was a constant battle to remember that I was doing what I had to do, to keep her alive, because there was no other option. At that moment, HDC (high dose chemotherapy) followed by a stem cell transplant was all that was left. Eight other drugs had let her down, left her with disease. Actually, I don't want to blame the drugs, I want to blame cancer. It's intelligent and while outsmart you at any given moment. It will hide and appear when you least expect it.

One of the things that helped B during this time was the mouth suction. Like when you're at the dentist, they spray the water and then suck it out. She had one of those attached to the wall next to her bed. So would lay with it in the crease of her mouth, closing her lips around it each time she needed to swallow. I was thankful for this. But saddened at the same time. It was just one more obstacle that presented itself and without fail, she overcame.

{My sweet girl}

At some point, during week 3, B found it difficult to breathe and required oxygen. This was one of the few things that she fought me on. No kid wants that mask on their face, have you ever experienced it? It caused me more anxiety using the mask once. She eventually switch to the nasal cannula. When the nurses would walk out, or at night, she would slide it out of her nose and leave it right above her lip. She would soon learn that this caused her stats to drop and the alarms to beep and the nurses to return. 

Respiratory therapists would come in at all hours to check on her. From the hours of 10pm-7am, if you weren't absolutely necessary, you got the boot. I wasn't afraid to ask you to leave. Don't worry, I wasn't declining anything important. But, after a long day of fevers, throwing up, crying, attempting lung exercises and deep breathing wasn't happening. 

{This is cancer.}

{Sometimes she had enough energy to sit up and draw. She's quite the artist. This was also the time she started pushing me away. The depression was setting in. She had been in the this room for weeks, with no fresh air. No family or friends. Just her, me and the tv. And 3,489 medical professionals. Some necessary, some not.}

Sitting next to her in the picture above is a box of tissue (random tears would stream down) and 2 green sick bags. She didn't even need me, she would simply turn her mouth into one and then hand it over when she was finished. I wouldn't say anything. Just throw it out, write the time and how much, grab the wet washcloth and then wipe her face.

Cancer, I still dislike you.

Donate for Bailey {click the link}

dreaded g

Sorry for the delay, it's been hard to start writing about this experience. I was on a roll last week and the break has really created writers block. The memories are there, but trying to express how I felt seems so difficult. 

It's been a rough week. Our St Jude family has lost another precious child to cancer, AML, an aggressive form of Leukemia. Unlike ALL, AML is more difficult to treat. 

Please keep these families in your thoughts, prayers and hearts everyday. We are all battling heartache, so remember to be sensitive to others. 

Day +5 Bailey started to receive the g-shot. I spoke of these a few posts back. She needed them for cell collection. They boosted her white blood cells in the bone marrow. The regimen of chemotherapy that she received wiped out her immune system. Your ANC is a number that tracks your immune system based off a formula using cell counts. I'm not going to try to explain, I have no idea how. I just know that 500 and below requires the kids to wear a mask. Ours, on average, is probably in the 4,000+. Bailey's dropped to 0. The goal was for the chemotherapy to kill any cancer cell in her body. However, while doing so, the drugs kill her fighting cells too. Now her body was vulnerable. A common cold could kill these children. It's very serious. 

The shots started to once again boost the marrow production. She had received the infusion of her frozen cells, but they don't work overnight. They're playing catch up. So until those cells started grafting, she needed her body to do some work as well. I need to add that our sweet baby was not given g via shots, it was through her IV. No pain from the needle, but definite pain in her back and legs. 

She would continue until her ANC reached 2,000, maintained for 2-3 days and then stayed above 500. This took 2 weeks to achieve. Every morning I woke up hoping for that special number. She eventually got there.

{While having no immune system you feel pretty bad my friends.}

{She wanted me to lay with her so badly, but I couldn't. So we snuggled up on my 35 week baby belly. I laid one blanket on me, in case she got sick. Then she covered up with another. Her fevers kept her "cold" and all those blankets kept me hot. I survived eating cups of ice.}

{That smile. It's still there.}

{They really encourage the kids to get out of bed when they can. It's a very frustrating process. Let's make you feel like complete shit, sorry it's true, but then get out of bed so you don't end up with bed sores.} 

Like most kids, Bailey developed mucositis. Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract. This tract goes from mouth to bottom. Chemo kills rapidly producing cells. The tissue that lines the mouth is the most sensitive part of the body. This can be very debilitating and lead to other complications. Most commonly, pain, inability to eat and increased risk of infection because of the ulcers. 

There are a few different systems, Bailey suffered from the following:

-sores in the mouth and throat (on the gums or tongue) 

-pain in effected area

-difficulty swallowing or talking

-white patches on the tongue

-increased saliva

-blood in mouth

-stomach pain (ulcers lining her stomach)

Bailey handles pain better than anyone I know. For her to ask for any pain medicine is a clear indicated that her pain level is a 15 on my scale. They started her on a morphine pump. It ran continuously and even allowed boosts. These were times she could push for an extra dose. She remained on the pump until she left. 

While trying to deal with the mucositis, which would improve once her cells began to engraft, she was still experiencing side effects of the chemotherapy. 

Vomiting and Diarrhea. Imagine how painful this was for her. Anytime she was sick, it was accompanied by blood. And tears, from mom. 

September is childhood cancer awareness month. Please consider making a donation to St Jude in Bailey's honor. A $15 donation gets you a t-shirt, if you have enough, we will gladly donate to a family at St Jude. 

Donate for Bailey {click the link}