The first phase of treatment is called Induction. It lasts for 28 days and has high doses of steroids and some chemotherapy. Liv’s first day she received some chemo in her CSF when they did the lumbar puncture, and then a round of some chemo in her port once she was awake.
The rest of the day after her surgery she was pretty groggy and nauseous coming off the anesthesia. She was also sore from the multiple bone marrow pokes, the LP and the port surgery. She cried and whined a lot. We felt so bad for her 😦 In the evening she was nauseous and in pain so they decided to give her phenergan with her pain meds so she would be able to sleep well. Within 15 mins of getting the phenergan she started acting crazy. She was hallucinating and was really paranoid. It was pretty eery to watch. She would reach out for something that wasn’t there, and try to grab it. Or she would be almost asleep and then she would jolt awake and turn her head as if she saw something and get these huge eyes like she was terrified. Or she would start talking to Daci (who wasn’t there). Or she would yell at Street to stop bugging her (also wasn’t there). It was pretty creepy and concerning to me. I told the nurses what was going on and they decided they better not give her phenergan anymore.
She was hooked up to IV fluids the whole time she was in the hospital. Because of this, she had to go to the bathroom all the time! She was up every hour or so to go to the bathroom and it was a huge ordeal to get her there. We would have to unplug the cart, wheel it around the bed, get her out of bed (which was painful for her), and get her into the bathroom. 48 hours after a chemo treatment her bodily fluids are chemo contaminated so when we help her use the bathroom we have to wear gloves and be sure it doesn’t get on any of her clothing. If it gets on clothing or bedding, we have to wash it twice on the hottest cycle, without anyone else’s clothes. Liv has been potty trained for a year and a half, but she still sleeps in pull ups at night. The second night we were there she had so much fluid in her that each time she would pee it would be so much that she would pee out of her pull up. This meant every time she peed the nurses would have to strip the bedding, and bleach the bed while I gave her a sponge bath. The poor thing was exhausted….and so were we!
There is only a single couch in the room…not even a couch… more like a padded bench. Rick wanted to stay with us in the hospital so he and I slept on that bench together at night. Needless to say, it was extremely uncomfortable and we hardly got any sleep. The second night was the only night he went home to sleep, and of course it was the night that we had to strip her bedding and give sponge baths every few hours 😉 Rick was amazing with her in the hospital though. He was so sweet with her and was more patient than I was in tough moments. He would carry her in and out of bed when she was too sore to move. I fell even more in love with him.
The second day Liv needed a blood transfusion. Her rbc’s were so low and had been for a really long time so she needed the transfusion to bring her numbers up a bit and give her some energy. The transfusion took four hours. About 2 hours after the transfusion she was wired! Haha! It had been a long time since I had seen her with so much energy. She had some visitors come that day and that really lifted her spirits as well.
The third morning Liv woke up with horrible pains in her legs and her back (side effects of meds). It was the saddest thing to watch. She kept moving around in her bed like she was trying to find a comfortable spot. The whole time she just cried and screamed. It broke my heart. I felt so helpless and I couldn’t keep my brave face anymore. I put my forehead to hers and I just started crying with her. I started singing our favorite primary song, “Heavenly Father, are you really there?” It was so hard to choke those words out because a part of me felt like I had been left alone. As soon as I got that line out though, I felt the strongest warmth and calmness enter my body, and Liv immediately went silent and still. She laid that way for the rest of the song as I stroked her hair. She finally had some relief from the intense pain and I was so grateful to my Heavenly Father in that moment.
Rick got back about an hour after all that had happened and he could tell that I was emotionally drained. He told me to go get out for a few hours. I drove home to see my other kids and take a shower. It was so therapeutic for me to get out of that room and clear my head for a few hours. My heart was breaking for my little girl, and I was missing my other kids and feeling horrible that I couldn’t be there with them. When I got back, I felt rejuvenated and ready to take on the next two days.
The rest of our stay in the hospital Liv’s mood was obviously affected by the steroids already. She got progressively more cranky and withdrawn. She wouldn’t talk to the nurses or doctors. She would just bring her blanket up to her mouth and cover it when they would ask her questions. With Rick and I she would just moan and whine and grunt. It was so hard to get her to use her words and tell us what she was feeling and what she needed from us. She didn’t want to eat hardly anything either. She would order all this food from the menu, and then not eat any of it when it came. The few things that she did eat were strawberries, carrots, and peas.
There were moments the last two days where she would snap back to her normal self. She would be giggly and silly and we would play games and she would do crafts. She really loved to play Minnie Mouse memory. And then just like that, she would snap back to being sad, angry or withdrawn.
We were so excited when they told us we got to go home on Sunday! They had prepared us to have to stay for 5-7 days, but that was worst case scenario. Sunday morning we woke up and told Liv we would get to go home that day. They unhooked her from the fluids and she actually got to get out and walk around the room! She came and sat next to me on the bench and it made me so happy 🙂 She had one more round of chemo to do that day. They hooked her back up around noon and it took two hours to administer. She tolerated it great and we were hoping to be out by 2:30pm. Of course, getting out of the hospital takes a lot longer that you would think, though. By the time we got all of our discharge instructions and Liv got de-accessed from her port, it was 4:30pm. We were so excited to head home! We pulled into our driveway and saw adorable heart notes all over our garage and my mother in law and sister in law inside cleaning my house. Yay!