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}

that one day

I want to let you know this post, for me, is really hard to type. Day 0 to +3 were hard. Plain and simple. I debated sharing some of the photos, not because they are graphic or disturbing, but heartbreaking. So please know that it's with what little courage I have, that I share. 

We ended our last post with the stem cell infusion. I think for the most part, it went as expected, on the medical side. The BMT unit has 18 rooms dedicated to transplants. Most patients receive bone marrow transplants, from a donor, to treat AML and ALL. Others, like B, who do not suffer from blood disorders, have transplants using their own cells. Recovery time tends to me much quicker, however some side effects are still the same. 

Like I said before, Bailey wanted to rest. Her dad was going to stop by after work, sometime close to 5. He only had a few minutes, he still had a 25 minute drive home to pick up our boys from after-school/daycare. When he arrived B wasn't feeling so great. She was sick, but hadn't eaten in days. Well I take that back. She had those 10-12 goldfish at some point. We went through bag after bag until we managed to get her meds under control. 

Sometime during Will arriving and Bailey getting sick, her heart rate began to increase, the machines started beeping. Like a mild alarm, not serious, but not registering as normal. Then her HR shot up past 160. I can remember how it felt and how scared I was and calm everyone else seemed to be. I should have kept a journal, maybe Will can recall better everything that transpired. One thing I remember is that her nurse wasn't on the floor and instead of looking for another one, I called for her BMT NP. I wanted someone in that room and I wanted to know what was happening. 

Why was her nurse not right there that whole evening? I know she had other patients, but today was a huge day for us, we didn't do this everyday like they did. Eventually, she showed up and there was some confusion, regardless, after some monitoring and med changes, again, we calmed and settled B. She was out for the rest of the night. I don't blame her. 

I want to say that Bailey's nurse that day was great. She happened to leave the floor and a time when B needed her, but there were plenty of qualified nurses available. I'm a little bit on the passive aggressive side, I have the patience of a 2 year old and I want answers. Then, right when I ask, don't ask me to wait. So in the heat of the moment I called for who I knew could help us and comfort us. The nurse so bad that she wasn't there, I felt bad for being hateful, but not for being a mom. 

While B was sleeping I was able to exchange a few works with Will, we talked when we could, but it wasn't often. He had the boys at home, work, dinner, chores...the housewife stuff. The maid/nanny/cook was on vacation. I kid. Anyway, while we were talking, I started to get lightheaded and just felt off. I had to sit down. It was hard to breathe, but I knew it was just being so pregnant. Then I realized, it was almost 6 pm and all I had to eat were some crackers and 15 cups of crushed ice. Baby Davis was kindly reminding me to EAT. I had forgotten. I never wanted to leave B's side. Will stayed a little longer, I grabbed a bite, said goodbye and headed to bed. Right alongside my girl. 

This day beat me down. 

{B shortly after we were able to get her comfortable. She's asleep, but her eye lids are still open. I don't know why I took this picture. I remember my mom asking how she was, but I couldn't think of the right words. Will would ask through the night too. It's taken me hours to just write the past couple posts. No way a text message would convey this day. The picture did. It hurts.}

{Grandpa Parker made a special trip to see sweet B. This brave girl got out of bed, as painful and uncomfortable as it was, but on her mask and carefully sat in her wheelchair. Grandpa brought daddy and her brothers. She wanted so badly to hug them, but wasn't allowed. The tears began and our hearts were breaking. I just felt so bad for her. Something simple as giving a hug, easily taken for granted, wasn't a luxury she had.}

{B managed to make it a few minutes out of her bed, but soon was wanting to head back to her room. Grandpa joined and they sat together. I know it meant so much for him to be there with her, for his son and his family.}

{She spent most of the next few days like this. All she wanted was to be held and all I wanted was to love on her.}

{A few days passed and I talked her into going for a walk. The only time she walked was to go to the bathroom. She wasn't allowed to leave her room, she was on isolation. Roaming the halls wasn't allowed either. Her change of scenery came with a walk to PT.}

I've mentioned a few times that B stopped eating shortly after arriving on the BMT floor. I'll explain in greater detail, for now, see that clear bag full of yellow fluid? That's full of vitamins and supplements based off her needs to keep her nourished. At some point I stopped eating in front of her. It always made me feel so guilty. 

Also, I haven't forgotten about the creamed corn. I just almost throw up in my mouth thinking about it. It was nauseating to be within arms reach of my own daughter. Cancer, I dislike you.

day zero

Writing this has been sort of therapeutic for me. I've always been very open about B's illness and what she's been through. Not so much on the internet, but within my close circle of friends. Some who are also facing this same battle with their children or friends who have been there since the day she was diagnosed. 

I kept a Caring Bridge the first year. It was a great way for to keep everyone informed, in one place, from one source. Remember the telephone game from grade school? It's kind of like that when trying to convey medical lingo. 

After her first relapse I shut down emotionally. The small amount of fear that was there in the beginning was back, but this time it took over. I can't remember how many nights I would wake up and stand over her sleeping body. She was tired, bald, sunken eyes surrounded by dark circles. Almost as if she had been beaten. See she had, just not in the sense we think of. Her body, her bone marrow had been abused over and over again and no one was stopping it. We couldn't, you stop, they die. 

While I am her primary caregiver when it comes to her treatment and therapy, I wasn't the only one affected by cancer. B has 3 brothers. She's in the middle, well as in the middle as a 2nd child in a family of four could be.  

{B & M just hanging out. No big deal, another day at the hospital. At 3, M understood that she was sick. He couldn't comprehend what she was experiencing, but he knew when she was in pain. He stood guard most days. The rest he ran the halls like a wild animal released from the zoo. On those days I just laughed. I dared someone to say something to me. But who am I kidding, I would have apologized and being my typical passive aggressive self cursed them under my breath. Actually just loud enough so they could hear and wonder if was aimed at them. And the answer to that question is yes.}

{She started off the day like this. What do you see here? That SMILE.}

Day 0 was just as routine as the next. They rolled in at 7 am for the shift change. Most of the nurses knew I wanted B to sleep as long as she wanted and could. She needed her rest and I wasn't going to have a crabby baby on top of a miserable sick one. She deserved that. Around 8 am they would want her starting weight for the day. 

Her weight was very important throughout transplant. They would take an am and pm weight. Due to all the medication she was taking and side effects from chemo, her body had the potential to retain fluid. One major risk was VOD. 

VOD stands for veno-occlusive disease and is a major complication that arises during stem cell transplant. It carries a high mortality rate. Some of the signs that present are elevated bilirubin levels, jaundice and rapid weight gain. Hence the obsession about her weight. Thank god she was 8. I kid. 

Fortunately, she never experienced or showed signs of VOD. 

B had stopped eating by day 0, she just didn't feel good. I mean she was counting out 10-12 goldfish and eating them throughout the day. These were accompanied by 10ml of water. Nothing would stay down and she would rather just not deal with the constant sickness. When I refer to sickness, I mean nausea/vomiting/diarrhea. I not feel the need to repeat those over and over. You'll get the point. 

Around noon several nurses had started setting up for the transfusion. She had her nurse for the day, but there were 2 others that would assist with the actual transfusion. The taped a few bags on the window. Each of them was for a specific reaction she might have during the transfusion. I added a picture below. 

{The window on the left has 4 bags. Every mother loves to see "just in case" bags.} 

As the nurses continued to get ready, the lady from the lab arrived with B's cells. I should have taken a picture. I don't care how creepy or uncomfortable it would have made her. Gosh, I can't even remember her name. Anyway, she was old, gray haired, smelled like moth balls, had a slight hunchback and reminded me of some character from the Adam's Family. I'm not even trying to be mean here. On a average day we are surrounded by a group of 20 something nurses. They are usually all bubbly and full of life. This lady worked in the basement with frozen cells. 

Back to the point of this point. So it was close to 1:30 pm and I was growing increasingly anxious. I was 34 weeks pregnant, the baby was on my sciatic nerve and getting up quickly was becoming quite difficult to do. B had taken a nap so she was perky, sitting on the bed taking it all in. 

At the time of the infusion we had her nurse, 2 assisting, the lab tech, her NP (nurse practitioner) and myself around her. The lab tech put on this bright blue gloves for cryo-coolers. When she opened the lid it looked something like this. 

Imagine it all without the huge silver cooler. It was a portable one. She had on a mask, apron and the gloves. Now I was under the impression that the cells were thawed. Remember they've been frozen for years. This was completely true. To survive they had to stay frozen. What was I thinking?? Clearly, like a mother and not a medical professional. 

She held the bags in her hands for a minute or so, "warming" them up. My breath was warmer. Then they were transferred into a syringe that would be used to inject into B's line. She has a double hickmen. Allowed for more than one drug to be given at once. A requirement for transplant. Toward the last few weeks, she was on 20+ medications, some couldn't be run at the same time. 

The nurses asked if we were ready and at the recorded time they began. That sweet nurse who infused the cells, bless her. I don't have steady hands. I could never be a surgeon, I sucked at the game Operation. 

Prior to our stay on the BMT floor I had heard horror stories of transfusion day. Everyone I spoke to told me how horrible it smelt. It was going to smell?? Why? It's frozen blood cells. Blood doesn't bother me. The preservative used is called Dimethyl sulfoxide or DSMO. Let me just say this is every pregnant woman's nightmare. Right up there with a natural vaginal delivery. High five to those of you who have experienced one and didn't mind. I'm not that girl. 

So the smell I was warned about was different for everyone, but the most common was warm creamed corn. Now, at first that doesn't sound so horrible. I love creamed corn. It really couldn't be that bad, all these wimpy moms, I laugh at wimps. 

Back to the infusion. So the first one was over, she had 2 syringes that needed to go through. I wish I could remember the amount. I can see it in my mind, what it looked like. I was too distracted to take a picture. Halfway through the first one she did start getting upset because they were so cold. There wasn't anything we could do. We had warm blankets, but that didn't even work. It was like infusing an slushy into her blood stream. 

As the 2nd infusion started, her oncologist and NP walked in. They would visit as often as possible. We technically weren't on their service, we had been assigned to the BMT team. So her attending and NP had temporarily changed. 

When Dr. P and FNP P walked in I could feel my body getting warm. That feeling when you really need to see someone, someone who brings peace and comfort. They were it and have been for the last 3 years. I know Dr. P adores my B. I can see it on his face everyday he lays eyes on her. It's the same look we all get. She's the essence of how life should be lived. She loves with her entire heart. She never passes judgement and try to get that girl to pick a favorite. She won't, she knows in the end someone would be hurt. 

It was in that moment that B began projectile vomiting. I knew it was coming, I could see her start to swallow more frequently. Her heart rate had increased. Her body was overwhelmed. No one stopped to help her, it was like it never happened. What I didn't realize is they couldn't stop the infusion, this was all time sensitive. Had her solid tumor team not walked in I would have had a panic attack. She didn't want to let go of my hand, but I didn't want her covered in vomit. Her NP, without saying a word, grabbed a box of gloves, slide a pair onto my trembling hands. We cleaned her up as much as we could. She cried. It was a slow painful cry. She wasn't hysterical, B had experienced a lot of pain and knew this too would pass. As I went to take off my gloves, NP P. but her arm around me and I simply said, "I know." I cried into her shoulder. I couldn't make eye contact with her Dr after that. I couldn't handle his pain too. At some point we all experience guilt over what's happening. We are doing what we need to for her survival, but at the same time we've subjected her to some of the harshest medical treatment used today. 

One of the things I had to be cautious about during transplant was chemo. When B would use the restroom, throw up, all of this had to be dealt with using precautions. I was to wear gloves if I had too, but mainly just avoid coming in contact at all. There really wasn't any information or statistics for pregnant woman who come in contact with chemo. The danger was there, just unknown. 

The finished the infusion. They noted time again and started to walk out one by one. Her primary nurse remained in the room. She had to document vitals more frequently and watch for any adverse reactions to the cells. She wore a blood pressure cuff and was on a heart monitor for 6 hours after the infused ended. B was tired. She just wanted to sleep. And so she napped for a little while. 

I wish the rest of the night would have been the same...but it wasn't. And remember the dreaded smell that I was warned about, yeah here it comes. 

{Sweet B - Day 0}

her smile is contagious

Have you ever met our sweet B? If you have, you know her smile, man it melts you. I've never lived a day without seeing her smile...not until this. Not until she experienced the effects from the cocktail of chemotherapy drugs. Cocktail, like that makes it sound more appealing. 

So if you're following the transplant journey, this would be installment 3. Make sure you read from the beginning. It's not timeline based, but it helps to go in order. 

So the first 7 days were chemo days. These were considered days -8 to -2, day -1 was a rest day, no chemo was given this day. Day 0 was cell day. This would be the day she would receive the millions of cells that had been collected over the course of 2 years. 

The pictures below sort of document a few of the moments I captured over that first week. Overall, B was in a great mood. She tolerated the chemo well with little medical intervention. They started her on Zofran (nausea) and Benadryl (nausea) the night we checked it. It cycled every 4-6 hours the entire month. She experienced a few episodes with nausea and vomiting. Carboplatin is known for making her feel crappy, it was part of a protocol she was on after her first relapse. 

{Days -8 through -2 she spent most of her mornings in bed. Chemo started early. Cartoons started early. Pre-meds started early. Early has never been in Bailey's vocabulary.} 

That SMILE is there.

{I tried to get her out of bed when she was felling up to it. Even just to order a snack. She wouldn't eat it, she wasn't hungry. But, her pregnant hormonal mother was always hungry. Sweet girl always put me first.} 

That SMILE is there.

{Visiting with her brothers. I'll write more about visitation. Long story short, she could only see them through Plexiglas. They couldn't hear each other, but you could see the love. I wish you could have seen the pain as well, because it was still there.}

That SMILE is there. 

{Enjoying a little PT. Another topic I'll discuss later. She loved the e-z rider. And did you know for the thrifty price of $100, you too can have one delivered via Amazon.} 

That SMILE is there. 

B made it through days -8 through -2. I expected nothing less from my girl. I have never doubted her ability to overcome obstacles that presented through her journey.

Day -1 was a day of rest. Let me start by saying the only thing she got rest from was chemotherapy. So it wasn't a true day for her body to rest. She still had lab work, vitals, weight, breathing exercises and physical therapy.

Day 0. My most hated day. I could list every date that has left me crushed, crying, heartbroken and defeated. Everyday that we received bad news, experienced loss, attended a funeral...this had become part of my new "normal." I'll be honest, nothing should be normal about attending 3 funerals in a year. All for children. All children who battled cancer for a combined total of 12 years. That's bullshit.

Cell Transfusion day will continue on the next post...

transplant, the harvest

Continued from the previous post...

Could you imagine saving your own life? Like actually knowing you are about to endure something so dangerous you could die. That your very own cells will be what saves you, allows your body to recover, to beat this obstacle in your journey.

In August 2013, three months after B's first relapse, we harvested her stem cells. We had discussed a stem cell transplant at this time, so we were taking all steps necessary to prepare for this. One major step was the process of collecting the cells.

First, she would take a series of shots. Most patients receive shots for 7 days, then they do a CBC and see if they're ready for extraction. B wasn't, she's never fallen into any "normal" category. I know this about her. She ended up taking them for almost 2 weeks.

Filgrastim, or g-shots, were given every night by me. They were stored in the fridge and had to be removed 30 minutes before injection. There were nights that we missed the 30 minute head start. Those nights were more painful. She would cry. So would I, but never shed a tear.

G-shots stimulate the production of white blood cells in the marrow. B experienced horrible body aches and pain in her lower back. Her marrow was working over time, producing an unnecessary amount of cells. In the long run it was worth it, but in those moments, not so much.

When she was ready, they would place a femoral line in a vein by her groin. As far as procedures go, this is a relatively simple one.

B doesn't do well with anesthesia. She's a monster. Upon waking up, she screamed for hours. At least 2 for sure. She yelled at me, told me how mean I was, that she didn't love me. She couldn't believe I was doing this to her. She started to punch me repeatedly. I just sat there, not saying a word. I knew this wasn't her. This was all the drugs taking over her precious body. When she threatened to pull the line, the nurse stepped in and asked me to leave the room. She knew I couldn't take much more and maybe B needed someone else. They say we hurt the ones we love the most. I know she loves me big.

I walked the quiet, sterile, white halls for a few minutes. With each lap I would stop and peek in on her. See if she had cried herself to sleep, almost like a baby. She was still a baby though, just 6 years old. She had spent the better part of the year in the hospital, sick, bald and missing her family.

Once they started the collection, B had to lay flat on her back with her leg turned out and flat. I asked that they order some Benadryl and anxiety medicine. She needed her rest and it was going to be a long day. The collection takes about 6 hours. They count the cells, if there's enough they remove the line bedside, if not, you stay the night and start all over the next day. Guess what we got to do.

{Our angel baby}

The 2nd day wasn't near as bad. B had a good night sleep, she had mail, donuts and the sweet blood donor nurse was so sweet. Could you imagine sitting for 6 hours straight watching blood go in and out of a machine? She didn't even use the restroom or eat the entire time. She never left B's side.

So after that rockin' good time, they managed to collected a couple million cells. I realize that cells are small, but when you think of millions, it really blows your mind.

Her cells would be frozen and stored for up to 5 years.

In December, when transplant time rolled around, we decided against it. There wasn't enough research to support going through with it. Statistics were not on our side and at the time all I could do was read the numbers. Nothing we read promised us anything and nothing showed a survival rate over 35%. We discussed this with B's oncologist and he was completely supportive. He knew there just wasn't enough literature to ease our fears. That we could either go through with the transplant or try radiation.

Since her treatment changed, she was restricted to isolation. I was thankful.

She was able to spend the holidays with her family. Stay on an out-patient schedule and even meet some amazing St Jude supporters. I like to think she touched their lives and because of her they live life differently now.

{B with Lucy Hale, she was the sweetest.}

{Jana Kramer autographed her Disney princess guitar. She was sold.}

{Parker Young and Geoff Stults (let's be honest, this visit was for me #momshame) played hop scotch and basketball with B.}

In April 2014, a week before we embarked on a Disney cruise, B had post therapy scans. They were clear. Our hearts were happy. She would return every 3 months for the next year.

I know I sort of veered off track, but I wanted to explain how and when we collected her cells.

July 2014 she returned for scans, her cancer had returned again. Transplant was necessary now. And at the time, was the most aggressive treatment available for her.

In September she was scheduled to have surgery to remove the tumors from her liver. A week before we found out there weren't enough cells collected from the previous summer.

We would have to start the g-shots all over, have a femoral line placed and have her lay in bed flat all day. While she didn't have to spend the night this time, she did spend 15 hours in a hospital bed. Only to spike a fever at discharge, causing her to be held for antibiotics and a blood culture.

Sweet B of mine. What would I do if things were simple. I'd be bored.

cancer...i'm really going there

Ever sit and people watch? Think about how they live and what their life is like? What their spouses do for a living? If they went to college or have kids. If they have kids, what are they like, what schools do they attend, what do they aspire to be when they grow up? Do they vacation in Hawaii or maybe the Florida beaches? Maybe they even embark on a family cruise every year in April. You know, when the weather is perfect. The spring air is still a part of daily life and summer is far enough off that there's no fear of a heat stroke.

As your daydreaming, wondering about this perfect family, do you stop and wonder if they've lost a child? Maybe to a car accident, drowning or even cancer. No? Oh, because it's too rare and never happens to someone you actually "know." 

I was that person. I'm guilty of being a people watcher. Sit me on a bench and I will stare away. Not because I am criticizing anyone, but because I'm so curious. Curious of other's lives. What they love, where they grew up, how they live? Is it a ranch style with wooden shutters or maybe an apartment downtown. I could get lost thinking about how everyone else might live. 

The one thing I never imagined myself getting wrapped up in...cancer. Not at my age, I was 29, who in the hell knew anything about cancer. How could your life stop, just like that, no warning at all. I'd be lucky if the cancer had come at me, I'd been married and had 3 beautiful children. I'd served in the military and toured America and Asia. While I was still a baby, I'd had my first boyfriend who took me to prom. I worked my first summer job and danced at every Senior football game. I got married, started a family and brought 3 gorgeous babies into this world. I'm bias, I know, but they are beautiful. I now have 4, my oh my. Sweet Davis joined us shortly after Christmas of last year. 

But, cancer punched us, right in the gut. Just like it does to everyone else. We went to sleep one night, woke up the next morning...less than 12 hours later we found out our 5 year old daughter had cancer. 

It was July 13th, a Friday. I'll never forget. There are few days that I remember so vividly, this is one of them. It's also one I wish I could forget. 

I've debated sharing our daughter's entire story here. Most of those reading know what she's been through over the last 3 years. So with that said, I think I'm going to focus on the 4 weeks she spent on the Bone Marrow Transplant floor at St Jude Children's Research Hospital. 

That month was the hardest. It not only beat me emotionally, but physically as well. My daughter was sick and I was 33 weeks pregnant. I couldn't imagine not being her caregiver, so there was no question that I would stay, but it took it's toll. I never complained to B. She deserved more and my temporary pain was nothing compared to what her poor body went through. 

I've never gone into detail of what she experienced that month. I'm not sure why, there isn't a specific reason. With September arriving in a few days, social media will be flooded with "go gold" and "childhood cancer awareness month" photos and stories. Parents, family, friends, researchers, doctors, nurses who see cancer everyday will share our stories. 

To be honest, I think one of the reasons I block out B's transplant, is it was one of the few times I thought we could lose her. That after 2 relapses her cancer was going to outsmart us and take her. I was going to watch her fall asleep one last time and then never see her blue eyes or kiss her sweet cheeks. She was never going to meet her baby brother. Davis had been on this journey everyday I had, he was used to the 3 of us spending our days together. 

{B the day we checked in for her St Jude vacation. Who wouldn't want to spend like every.single.day with this girl. Hello matching boots, jacket and umbrella. Girl's rain game is #strong.}

We checked in around 9pm on a Tuesday night. Don't even get me started on that. I know there's a protocol and reason they do this, but it's a horrible time to check in. All you want to do is unpack and rest, but, you have 4,587 questions to answer. 95% of them are in her chart, but they have to ask anyway. B had to have all her vitals, weight, start iv medications...etc. etc. All this mom wanted was her cold chicken sandwich and lukewarm Diet Coke. Shortly after midnight we settled into our new home away from home. B was allowed to have her own blankets and pillowcases. They had to be washed daily though. I brought a few of her favorites so I could do laundry everyday and never leave her without her comforts. I was going to do whatever I could to make her happy. 

{November 5th was the last day she ate a meal until January. She loved the ham and cheese from the cafe, this was the last one she had.}

Chemo started that morning...continued for 7 days. For 7 days I let them pump the most toxic drugs into her body and at a rate she'd never experienced before. The amount of chemotherapy she received was so intense, without a stem cell transplant her body would have never recovered.

Bailey would save her own life. She's the definition of a superhero.

To be continued...