Maintenance

After such a hard night I was so grateful to have a day with no procedures. And after such a long hard day and night she just wanted to rest, not that I blame her. But our main focus for the day was to get her moving. In the morning we tried a walk. She would walk a little then sit. Then repeat. When we were finished as she was trying to climb back in bed her legs were shaking. She was, of course, exhausted and fell asleep not long after. When she woke up the nursing students gave her a bath and were assigned to play with her. I decided to take advantage of that time and get some fresh air, literally. I walked outside and since there were no benches (think I went out the wrong entrance for benches) I found a place to sit in some rocks. I had my daily pressure release.

It didn't last long though. 1. It was hot outside (I've been living in a season of sweaters and fuzzy socks on the inside) and 2. Bugs were starting to crawl on me. I took the rest of my little break inside on a comfy chair. 

When I came back to her she was pretty much zonked out again. So I just let her rest some more. Getting the yucky stuff out of her body is hard work. 

She didn't sleep too long and when she woke up she was fussy, wanting to be held. As I held her she said, "Mama, I hurt." My heart nearly broke in two. I asked her where and she pointed at her stomach. A common side affect to one of the meds is nausea but she also hadn't eaten in quite some time. I had the nurse bring us a buffet. Jello was the clear winner. I ordered her some real food as well. Since I was the one feeding her she ate a good amount. The only problem was she still had her Oxygen max so I would have to fit the fork or spoon into the hole along he side of the mask. It was a bit tricky to say the least. 

The food really did the trick and she perked up. I was able to get her out again but this time just in the wagon. And since kids were playing in the toy room we had to just wave as we went by. 

The evening was fairly smooth and up eventful. She has been logging quite a lot of time on the iPad, which she doesn't complain much about. And I've learned the hard way that I better charge it at night regardless of the battery level or we'll be in trouble. Up to this point she has just watched shows or movies. I was so encouraged to see her, finally, choose games to play with. 

Today was really a day to recover and maintain. By the end of the day, and when her movie was over, she pushed theiPad away and said, "suggle, mama, bedtime." And then tapped the spot on the bed next to her. How could I refuse?

Day 1

The first 24 hours are different than Day 1. I promise it will make more sense later.

Day 1 was a hard day.

Tuesday morning, August 19, when we got up we had another procedure to prepare for. She would go under general anesthesia and have a portocath placed, a lumbar puncture, to check her spinal fluid for any of the tumor cells, and her first dose (and that's first dose as in first day of treatment, Day 1) of chemo injected into her spine. She also ended up having an echo done at the same time. It was a lot.

One of my favorite parts was when they'd say, , "it's at 10." "No, 12." "No 10." That kind of stuff happens a lot around here.

They wheeled her downstairs and let me go along. The bed they put her onto was skinny so I stood with her and people were shuffling around. Then I notice the nurse anesthetist start putting medicine in Mary's IV. As I always do I asked what it was. It was the drug to put her out. Before I knew it they had her eyes taped and they were incubating her. I wanted to scream, "Wait! I can't be here for this!" I turned around and finally got the attention of our nurse and just said, "I need need to not be here." She quickly ushered me out, not only that but she ushered me out with someone talking to me. That nurse began to explain the portocath procedure and by the time we got into the hallway Karen (a.k.a. Granny, a.k.a. my mother in law) was walking toward us. 

When the nurse went back to her duties Karen set her things down and then demanded that I hug her. And thus began another pressure release. I was so grateful to have her with me to talk and make plans. 

When Mary was done and they came they got me as they wheeled her to recovery. And the the fun really began. She was extremely agitated. She even kept telling Granny to go! Not wanting to upset her more, and having lots of things to do (she has been me while I'm away) she left. I had the iPad (don't know what we would do without that thing) so I put on a movie to distract her. She was having a difficult time keeping her oxygen up. And she wanted nothing to do with anyone who would try to put anything near her face. 

They eventually brought us up to her room. She did settle down some but she still needed some oxygen. I began having flashbacks to when she had her tonsils out and she struggled in the same way which led to pneumonia. That scared me more than anything, she has nothing to fight off the pneumonia with.  The whole afternoon kind of went along the same way. Watching her closely, adjusting her oxygen mask when needed.

Meanwhile I had another visit with Dr. T. She handed me a pamphlet that said ALL. We finally (sure it's been about 48 hours at this point but it felt so much longer) had a diffinative diagnosis. Acute lymphoblastic leukemia. If a leukemia could be good this would be it. It has a good prognosis and it's much easier to treat than other leukemias. What a tender mercy. Then she handed me a calendar. On it is mapped out almost every medication she will get for the next month. I know it sounds strange but that calendar makes me so happy. I can't wait to get home and laminate it. There was a lot more information overload, but she promised me that she would repeat everything she was telling me over and over until I got it. 

That evening David brought the kids up. I was so excited to see them. I think William grew in the two days since I saw him last. We chatted and ate and Mary either dosed or watched movies. They didn't stay long and she did give them hugs when they left. Before they left, I wanted to talk with them about what was going on. Just the night before, on the phone, Ruth had asked, "How's Mary? Have they figured out what's wrong" it nearly broke my heart. For this first visit I kept things simple and straightforward and matter-of-fact. And that's just how they took it. I was so proud of them both.

After they left Mary continued down hill. Struggling more and more to keep her oxygen where it should be. She was so tired and and, in a word, ticked with being constantly messed with. She has meds she has to take by mouth twice a day. Taking pills isn't as big a deal as it may seem. Prior to this she had been on iron for about two months. She was at the point where I could hand her the pill and she would put it in her mouth and swallow. Being in the hospital though has made her a bit less compliant.

That night as I was trying to give her the first pill, holding her down, she went wild. Screaming, fighting, kicking and even digging nails in my arm. And then she pulled the tube going into her port apart which added blood to the battle. The nurse worked quickly and help came fast to get things back together. 

From that point we've crushed her pills and put them in a few bites of applesauce. I rotate bites with the "plain" applesauce and the "med flavored" so while annoyed she still takes them. 

The night continued as it started, crazy. Her temperature went up, combined with the oxygen issues. A chest X-Ray was ordered, plus blood cultures and blood work, most of which could be taken from her port. Again I was having flashbacks to her week with pneumonia. It was intense, it was stressful and it was down right scary. They finally gave her LASIK, since she had very poor output. In the end that's what did the trick. 

Here's what I think happened. There was the perfect storm of the general anesthesia, her sleep apnea, her low tone, plus all the stuff they're pumping in her.

By around 11:30 she finally settled. They got a different type of oxygen mask which kept her consistently where she needed to be. She slept pretty much the rest of the night. Of course I was so wired it took me a long time to be settled and calm.

I kept thinking of her fighting me over those meds. I tried to be patient but all I kept thinking was how I need her to scream and kick and dig her nails in. I need her to fight. I need her to fight hard.

Although it would be nice if she wouldn't fight me.

The First 24 Hours

Fortunately, they let me drive us to the new hospital.  And once we got there they were ready for us. Dr. T had asked that they call her when we got there, and she came not long after we were settled in. The evening was a bit of a whirlwind. Once we were settled Dr. T, the hospitalist, and a couple of nurses were in our room as I answered question after question of her history. And then Dr. T layed it all out. It was like hitting the ground running. She felt certain that we were dealing with one of four things; ALL (easiest to treat, and could be done here), AML (a bit more complicated, and most likely we would have to go somewhere else), aplastic anemia (she doubted this was it, since she didn't present like one) or ITP (idiopathic thrombocytopenia purpura, basically nothing, she was convinced this wasn't it and if it was then she should quit her job). The only way to know is to do a bone marrow biopsy and that she would schedule one for first thing in the morning. In the meantime she would get a transfusion of platelets, which they did recheck and they were at 13. Also her WBCs, white blood cells, were 10. The bone marrow results could take until Tuesday to get back but she would look at the slides and be able to give us a preliminary result. 
She shared some many more things it was information overload. After she left our nurse and the charge nurse went into support mode, it was amazing. They brought me a notebook so I could write any and everything down, they told me that at night they were there to unload on. During the day so much information would be thrown at us that they were there as a support. It was overwhelming, to say the least.
Meanwhile Mary had to not only have another blood draw but a new IV in. It was rough for us but she was rewarded with two cups of chocolate ice cream, two cups of jello, a popsicle and a few graham crackers. All of which she felt pretty good about.
We both slept pretty well, all things considered. And bright and early someone was there to draw blood. Her platelets were up to 75 and her WBCs were up to 20. Doubling in such a short amount of time, with her other symptoms was, for me, confirmation that we were dealing with a leukemia.

Not long after that we headed down the hall to the PICU, where the bone marrow biopsy would be taking place. I stayed with her for a little while but I knew I couldn't stay for the procedure. Technically I could have but I knew I didn't want to. I know my limits, and that far exceeded them. I walked back to our room, and I cried. Well, I call it having a pressure release. For the first time it all kind of hit me. And then I cried some more because I couldn't find any tissues in her room. The nurse came in, saw my state and ran and got me two full boxes. I took some deep breaths and started writing anything I could think of. 

I knew the procedure would be short, and it was. They brought me back while she was still asleep. And asleep she stayed for some time. I know she was tired and I think she was just taking advantage of the nap time. After watching her for a while they brought her back to her room where she slowly woke up. It wasn't long before she was drinking and interacting.

We had our first visitor, David, which was happiness all around. While he was there we took her on a walk around the hall, which she sort of tolerated. 

By that point we had also visited with the doctor a couple of times. By looking at the slides she could tell that it was either ALL or AML but we would have to wait until the final results came the next day. However how she talked, sharing treatment plans and such, I could tell she felt it was ALL.

The rest of the evening and night went smoothly. She was eating and drinking well. And then had a surge of energy around 11 so we did some hall walking. Which I know is good, but it was ready for bed!

That about covers everything up to Day 1.

Are you still with me?

Pre-The First 24 Hours

Since I'm starting this a few days in, and I really want to start at the beginning, I'm back tracking.
The first 24 hours starts Sunday, August 17, eveningish.
Two days before the first 24 hours was Little Miss's first day of Kindergarten. I was so nervous for her, but she rocked it out like nobodies business. When she came home she kept saying "class!" I think the most exciting thing for her was being surrounded by kids, being the social butterfly she is. That evening I noticed on her stomach and legs petechia. Small, even tiny, red flat spots. Given my educational background, and overreacting nature, I knew that they could be a sign of something really bad. But they could also mean nothing. I  convinced myself, sort of, of the latter.
A few hours before the first 24 hours she was so off. Sunday morning she was crying and upset and as the morning went on I knew that something wasn't right. Then she fell asleep on my bed, then I she felt warm. I took her temperature and it was 101.2. Then I panicked. David wasn't home so I called him, mainly so he could tell me what I already knew: I needed to take her to the ER.
While a good 85% of that visit involved waiting, here's what happened during with the other 15%. They drew her blood, ran a few test. The results came back with a platelet count of 8,000, or 8 (normal is 150-400), she was also slightly anemic, and she had increased lymphocytes. But all anyone was focusing on was her platelet count. While it was shockingly low, it confirmed my feelings and explained the petechia. The doctor called few different doctors, which would then "punt" (his words not mine) off to someone else. The one who finally kept us, Dr. T., was at the hospital an hour away (better than the one two hours away") and she wanted us there that night.