Waiting

I think I was hoping that the steroid effects would wear off immediately, even though I knew logically that they wouldn’t. The next day was pretty much the same as it had been. Luckily, she doesn’t seem to be too sore after a bone marrow. I know they are super painful, so I’m grateful that she doesn’t seem to be too sore afterward…or at least she doesn’t complain about it. She did have a lot of sad moment throughout the day. When she’s like that I usually do a bath. She loves to get in the bath and use the bath crayons on the wall. I think I folded laundry on the floor while she played in the tub for a full hour! That night Rick and I went on a much needed date! First one since the diagnosis. It felt great to get out together! That night she slept ALL night long! Well, she got up to use the bathroom, but didn’t ask for food once!

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The next day was Saturday, and the last day of Spring Break. We decided to go do something fun as a family. The doctors had said that since her counts are so good this month, she would be ok to get out and do a few things. We decided to take them to see the movie Zootopia. I made Liv wear a mask when we were in the common areas and then we got tickets down at the very front. No one was sitting down there so we let her take her mask off and enjoy her popcorn and snacks. She was in heaven and so happy. The last ten minutes of the movie I could tell she was starting to get sad. I asked her what was wrong and she said she was really hungry. I told her we would get lunch as soon as the movie was over. When the movie ended I put the mask back on her since we were going to be around a ton of people and she got really upset. She started crying and saying she didn’t want it. I know it was worse because she was hungry and in one of her sad moods, but I’m sure she doesn’t like to wear it and be different from everyone. That night she got up four times! Ah! I was so hoping we were over that!

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I woke up Sunday morning with a major headache…I’m sure due to lack of sleep. Haha. Our new church time is 9am (we just moved into a building) and I was just sure I wasn’t going to make it. But after about ten minutes of laying in bed and thinking about how there weren’t many Sundays that Liv was going to be able to go to church, and that this was a Sunday that she could go, I decided that we should all get ready and go together. When I told Liv that she got to go to church today the look on her face made me so happy. She was so excited to go and was practically giggling as I got her ready. My kids weren’t all able to wear their Easter clothes together on Easter Sunday so I dressed them in them for church. She was so excited to match Daci 🙂 We sat on the very back row, away from everyone else. It was so great to see everyone from the ward. They have been amazingly helpful during this time. We have had countless meals and presents and sweet words given to us. During sacrament Liv just seemed so happy and content to be there. “Following along” in the hymn book during the songs has always been her favorite thing to do, so when she started to do it in sacrament meeting I got a little teary eyed. It felt so great to do something normal as a family. After sacrament I took Liv and Stade home (he’s had a sinus infection) and the others stayed. She was so happy the rest of the day. Around 6:00pm, she got really tired and a little whiny, but for the most part Sunday was a GREAT day! She also slept all night without food that night!

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Monday was also a great day! She was happy all day and had fun playing with Street. She is now up for most of the day and wanting to do things. The whole last month she has spent most of the days laying on the couch so its great to see her up and moving. Her preschool teacher came to see her and bring her presents from her and the rest of the class. That also brightened her spirits 🙂

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This morning I got the call from Primary Children’s. It was the nurse practitioner that had seen Liv so upset last Thursday. She told me that the Minimal Residual Disease test came back negative! This test is the most sensitive test out there right now. It is done in Washington so the sample they took on Thursday was sent out there to be tested. It can detect one leukemia blast in 10,000 cells. The official reading came back as less than .01% which is determined as negative. Yay! I was so happy! The NP asked me how Liv was feeling. I told her she was a lot happier, just over the last two days. I told her the last month had been really rough, but that I was sure everyone had a hard time like that. She said, “No, she definitely reacted stronger than most.” Haha. That was comforting, and not, all at the same time. It definitely validated my feelings, I have felt like this has been the hardest thing I have ever had to go through. I’m so glad we are through with Induction! She will be on steroids a lot throughout the rest of the process, but never for that long in a row. Hallelujah!

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The next phase is called Consolidation and is 28 days. She will be taking a chemo pill everyday, have 3 weeks in a row that she has a lumbar puncture with intrathecal chemo during clinic, and will have one push of vincristine chemo. This is supposed to be a fairly easy round and her numbers will be up. There shouldn’t really be any side effects. Yay! Bring on Consolidation!

 

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2 thoughts on “Waiting

  1. It makes me so emotional every time I get on here and catch up on what you’ve written, but this blog is going to be such a treasure for Liv to look back on!! You record everything so beautifully. So happy she is done with induction!!! Such a huge milestone! You are both my heroes. Love you so much. 💖

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  2. I read these and cry, both happy and sad tears with every update. Love coming at you from Idaho, momma!!! The kids looked absolutely darling in their Easter finery!!!

    Like

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