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.
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