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...