We went to the hospital four days after Liv didn’t make counts. Protocol is to check counts four days later and see if they have raised up enough. Even if they hadn’t, she still needed to go in to get her Pentamidine and Vincristine. It was Fall Break so Daci was home from school. Liv has been begging me to let Daci come to clinic with us for months. Since she was home, I decided to let her come with us. Liv was a COMPLETELY different person at the hospital with Daci there. The whole ride up she smiled and laughed and talked, as opposed to frowning and crying in the back seat when we are by ourselves. When we walked in the hospital she excitedly started telling Daci about each and everything we passed. She really wanted to take her to the cafeteria to get a snack before our visit since we were early. During the visit Livvi actually talked to and responded to all the nurses questions. She was going on and on about what she would be for Halloween. All of the nurses gave me a shocked look. They were loving it. Haha! They drew labs at the beginning of the appointment and her ANC was up to 600. Yay! She was over 500 so she could get her Methotrexate, but she was below 750 so they didn’t escalate it higher than the last dose she had. The girls played and did crafts while Liv got all of her medicines. It was an extra long appointment because of the Pentamidine so I was glad to have Daci there to help distract Liv. After the appointment Liv really wanted to take Daci to Sweet Tooth Fairy and get a treat 🙂 Liv loves her big sister and looks up to her so much. I’m so glad Daci was able to come and make the day easier on Livvi.
We have been doing lots of fun things to try and pass the days while Liv’s counts were low. Luckily when her counts were low, there was Fall Break, and then the doctor said she could go to preschool the next week since there are so few kids in the class. We just have to be sure to keep her washed and sanitized extra well. We didn’t go out and do any of the fun Fall activities, like Cornbelly’s since there would be a lot of people and germy surfaces. We tried to make our own fun inside our house though 🙂
One fun thing I did let her go do, even though her counts weren’t very high, was go to the Princess Tea Party that the Distinguished Young Women and Make a Wish teamed up to do together. I was in the program back when it was called Junior Miss and I am just a big fan of what it teaches young girls. I knew it would be fun for Liv to go to the party, and maybe it would also teach her about service and to be grateful for the people that serve her. She had a blast dancing with one Young Woman in particular. She just fell in love with the Anna girl and she danced and played with her all night.
We went Trick or Treating on Halloween! Livvi dressed up as Jessie from Toy Story 🙂 We actually had her labs drawn Halloween afternoon and found out right before we left to Trick or Treat that she was at 4800 for her ANC!! We were totally shocked and so happy to hear that she had rebounded so well. She had a blast trick or treating that night and I was glad I didn’t have to worry about her as much while we were out 🙂
We had clinic yesterday, Rick came with us because Liv had to have a lumbar puncture at this visit. She was pretty moody and emotional at the visit. She didn’t talk to anyone and kinda whined the whole time. They did the chemo quick and then sent us down to the CPC for the LP. We were actually ahead of schedule and were so excited that we would be getting out of there early, but then we waited an hour in our room. I guess they got behind schedule at some point and we had to wait a while. Haha. When we went back in the procedure room, Liv lost it. She started screaming and pulling away from the doctors. She wrapped her arms around my neck so tight and wouldn’t let them get to her port to put the sleeping meds in. I had to pry out of her grip to get to her port. She cried and screamed for about 6 more seconds until the drugs knocked her out. Poor thing 😦 I hate seeing her so scared.
We only have one more visit for this round and then we are in Maintenance! Maintenance is a year and a half long but we only have to go once a month up to the hospital vs once a week. We are excited for that! There is a lot that we have to do at home, daily chemo pills, steroids, etc. but we are excited to be able to be at home for it 🙂