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}