We got home from clinic Tuesday afternoon, and Liv felt great. She had a blast playing with her brother and sister, and they also COMPLETELY tricked us when they came up the stairs. Street and Liv had switched clothes and hats and came over to me. I started to talk to Street as if he were Liv and after a second I did a double take and tried to make sense of what I was seeing. Haha! I was totally confused. Silly kids 🙂
The next morning Liv woke up and was having fun and playing with her little cousin that came over. By about 11am, however, we could already see a big change in her emotions. She was starting to act sad and wasn’t talking much. This was after just 3 doses of steroids (the two the day before and the one that morning). The rest of the day she was sad, emotional when things didn’t go her way, and just wanted to lay around.
By the end of the day I was having major deja vu from the first time we had to do steroids clear back in Induction. Poor Liv was sad, sullen, highly emotional, and wanted me sitting next to her constantly. Because I was sitting next to her, the rest of my kids got jealous and piled on the small couch with us 🙂 I was scared of what the next day would bring. I was anticipating lots of breakdowns and crying. I also expected that she would start getting really hungry and be begging for food all day.
By mid day she was starting her emotional breakdowns. They started small with just mostly being sad and whiny. She was pulling her hands up to her eyes and wouldn’t use her words to tell me what she needed. By dinner time she was full on screaming and crying. She cried so hard that she got her infamous red splotches all over her forehead and under her eyes. It is so hard to see her like this. It not only breaks my heart, but it also wears on me so much emotionally and after a few hrs of it, I feel like I can’t take it anymore. It’s exhausting! Luckily a friend dropped by right about the time that I was about to break and brought Liv a little present. That cheered her up a bit 🙂
I knew the next morning would bring another clinic visit and I was so not looking forward to it 😦
We had to go back to clinic on Day 4 of this cycle for a dose of pegasparagase. It is a chemo that takes 2 hours to administer and then she has to be monitored for 2 hours afterward because it has a high risk of allergic reaction. When we got there they had to access her port and she was not happy about that. She cried pretty hard. Then we had to wait a full hour before the chemo was even brought up to the clinic. Every second that she isn’t getting anything done totally stresses me out because I know with her on steroids there could be a meltdown at any moment. She was pretty sad and whiny the whole visit. She didn’t want to get up and do crafts and play like she normally likes to. She just wanted to sit in her chair and watch shows or lay on my lap. At one point the treatment dog came to visit and she was excited to get to feed him a snack. We got a small smile out of her then 🙂 Even though she wasn’t very happy, I was pleasantly surprised that she didn’t throw big screaming tantrums like she did when we would have clinic visits during Induction. Yay! It was a really long day. We left at 7am and didn’t get home until 3pm.
I had started getting a really sore throat the night before and it had gotten really bad while we were at clinic. Normally I wouldn’t be worried about it after only a day, but with Liv’s immune system dropping each day, I felt like it was important to get in and make sure I didn’t have Strep that I could pass to her. On the way home, I called to get an appointment. I asked Liv what she wanted to eat for lunch (at this point it was 230pm and she had refused to eat all day long). She said she didn’t want anything to eat.
I dropped her off at home with Rick and headed to my appointment. About 30 mins later I get a text from Rick that she had finally decided that she wanted eggs for some food so he scrambled them for her. She ate them and then a few minutes later threw them up everywhere. Because it was within the first 48 hours of getting chemo, they were contaminated and Rick had to take extra precautions getting it all cleaned up. The poor girl was so nauseous the whole rest of the night and just leaned over her big bowl and cried for hours 😦
That night at 7pm she was still crying over how nauseous she was. I finally suggested she go to bed with her bowl and she basically ran up the stairs and jumped into bed. Haha! She fell asleep within a minute of being there. Unfortunately, the whole evening had been so chaotic that I forgot to get her in her pull-ups. Duh! She is pretty much potty trained at night, but for some reason when she is on steroids she pees A LOT! She came in at 2am to tell me she had wet the bed. It was chemo pee so I had to get gloves on, strip the bed down, wash the bedding on the hottest cycle twice and get her rinsed off. Boo!
The next morning was Saturday and I expected lots of steroid issues and crankiness. She completely surprised us though and was pretty happy for the most part! Rick and I got a lot of work done in the yard and then that evening my aunt and cousin came to babysit while Rick and I went out. My aunt said she was so happy all night and I got a text with a picture of her with a big smile. It made me so happy!!
The next morning was Sunday and she finally woke up with a little appetite. She asked me to make pancakes 🙂 We had pancakes and Rick gave them a food cutting lesson. They were all excited to get to use their little kid knives and cut their pancakes. It was so funny to watch them be so focused. Haha!
She was happy the whole rest of the day! We invited her Yia Yia to dinner that night and after we ate, Liv begged to have a sleepover at her house. I was nervous to let her go because of how she might behave on steroids, but she had done so well the last two days that we felt like it would probably be ok. She did great other than she peed out of her pull-ups again. Darn it! I felt bad her grandma had to deal with that whole fiasco 😦
The next morning she had quite the appetite! She had four scrambled eggs, a Roxberry smoothie, and half of her grandma’s smoothie too. Haha! We had a good, happy day and that evening we went and picked raspberries with her cousin. She jumped on the tramp with her other grandma and there were lots of giggles 🙂
She went to bed great and then woke up once again at 2am because she wet the bed. Luckily she was able to go right back to sleep. I however was not, which is why I’m doing a blog post in the middle of the night 😉 Haha!
I can’t help but be so grateful that this week went as well as it did. I hate steroids and what they do to my baby. They turn her into a completely different person. After the first few days I was just sure that by the end of the 7 day pulse she would be like she was at the end of induction. We were so pleasantly surprised though! It was almost like the further into the week she got, the less emotional and more happy she was. We didn’t have the awful hunger side effects and weight gain. We started seeing the hunger creep in and the last day, which was totally manageable. Her cheeks also started puffing on the last day, but now she gets a 7 day break from them so she should be ok. We are so grateful that it went so well this first week! We will still see some side effects over the next few days as the steroids leave her system, but hopefully it won’t get too bad! We are hoping for one more good week before her counts drop significantly and she may start feeling really sick. Thank you for all your continued support and love!