Interim Maintenance 1, Days 12-21

Liv has continued to do GREAT during this round! We have had a fun 10 days since her last Chemo day and she has been really happy. We did notice this last week that she has been more tired. By about 4 or 5 in the late afternoon she is exhausted and if we are in the car or laying on the couch at that time, she almost always falls asleep.

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She fell asleep in the car one afternoon
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I guess Daddy was tired too 🙂

She has also lost some more weight this week. She isn’t as hungry, and when she does ask for food, she usually only takes a bite or two and then doesn’t want anymore.  She still wants a green smoothie each day and its pretty much the only thing that I give her that she actually finishes. After induction she was up 14 pounds, 9 weeks later she has lost 8.5 lbs and is still up 5.5. She is currently at 57 lbs. It’s great to have her slowly looking like she used to. Her face has thinned out and we can see her beautiful sparkling eyes again 🙂

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Here are some fun things we have been doing. I am so happy she has been able to enjoy some fun activities in the beautiful weather before her counts drop too far and we can’t be around people as much anymore.

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She adores Stade and is such a sweet big sister
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She was too tired to go play with all the kids that were at the park, which makes it a lot easier for me. She really shouldn’t go play with all the kids and play in the mud or on the playgrounds so it saves me from having to tell her “no” and break her heart. It also saves me from the worry that she’s getting germy. She loves to sit in the stroller next to Stade and be with us 🙂
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My sister in law and I took the kids to get cupcakes one day
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Swimming with cousins in a private pool
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So stylin!
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State’s birthday party was this week and she loved playing with and holding her baby cousin
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Helping Stade open his presents

On Sunday Liv woke up at 5:30am crying about her tummy hurting. She had pretty bad diarrhea, probably about ten times from 6am to 2pm, and then she stopped and felt a lot better. We couldn’t figure out what it was, but figured she probably just ate something that wasn’t sitting right.

Home Health came on Monday to draw labs. She was pretty nervous again, and wanted to sit on my lap and hold Honey. She panicked and yelled right before the needle went in, but once it was in she was great.

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Later that day her sister started complaining of a headache and a sore throat. Normally I wouldn’t run her right in to get looked at, but now that Liv is at high  risk if she gets sick, I decided to have her seen by our pediatrician. Its a good thing I did, because she ended up having Strep. I suddenly thought of how Liv had had diarrhea the day before and wondered if that could have been a symptom and worried she also had it. My pediatrician recommended I bring her in as well, so I ran back home and grabbed Street and Liv and took them back to the doctor. When I got there, the office was just as awesome as they were the last time I had to bring her in. They didn’t have me go to the sick side, they took us straight back, and had completely disinfected the room for us. The nurses were so sweet to her. I’m so grateful for our pediatrician’s office! Liv was kind of a stinker when we were there. She refused to open her mouth for the Strep swab. She cried and pushed it away over and over again, so I finally had to pin her arms and try to force her mouth open. Even then, I don’t think we got the best sample. She is so dang strong! Luckily the swab came back negative. We had Daci sleep at her grandma’s house that evening to stay away from Liv just until the next day when she wouldn’t be contagious anymore.

Later that afternoon our nurse at Primary Children’s called to give us her lab results. Everything was pretty good except for her ANC, which is the number they watch to see if they can get chemo the next day. She was at 600. If she is above 500, she can still get her chemo. If she is above 750, then they escalate the dose from the last dose she received. If she is below 750 but above 500, she gets the same dose as last time.

Her ANC has dropped a lot since she started this round. The first day of this round it was at 3200, Day 10 she was at 2000 and Day 21 she was at 600. The ANC is the Neutrophil count. The neutrophils fight off bacterial infection, she is pretty low now and if she were to catch something it would be hard to fight it off. If she winds up with a fever about 101, we would be admitted to the hospital. This is pretty common this round.

When we got to clinic the next day, her doctor decided she wanted to re-run her CBC (complete blood count, this is what Home Health took the day before). She said that since it was so borderline between 500 and 750, she really wanted to be sure what the number was that day so she could know for sure what dosage of chemo to give her, or if they had dropped so low that she couldn’t receive it at all. It took over an hour to wait for the blood work to come back, and luckily we did re-run it because her number had jumped a little to   800, so she was able to up her dosage of chemo and stay on track with the optimal treatment. She said with how much she has dropped the last few times, it is very likely that she won’t make counts next time.

So, our clinic appointment took a while this time because not only did we have to do labs, but it was also a Pentamidine day. The Pentamidine drip took an hour, then they had to flush the line for 15 mins, then they did the two Chemo (Vincristine and Methotrexate) pushes, then de-access. I was a little bit nervous because it was the first time that Rick didn’t come with us to the hospital. She never wants anything to do with any of the staff so its always my responsibility to keep her fully entertained for hours. The regular Child Life specialist came to see her and asked her what she wanted to do. She picked to do “snow”, her very favorite activity there. Its this powder stuff that they let the kids pick a paint color, mix it with water, and then squirt it on the powder. It makes this cool snow stuff and then she plays with little toys in it. She hasn’t fully warmed up to the Child Life Specialist yet, but there was a new volunteer there that was training with the Child Life Specialist and Liv immediately took to her! She played with her for an hour and a half in the snow! It made me SO happy to see my Liv act like herself at the hospital! She was so cute and had so much fun with the cute volunteer. I hope we get to see her again!

When we were all done, Liv was hungry and wanted food from the cafeteria. Nothing sounded good to her though. She finally found some celery, carrots, and grapefruit that sounded yummy. It’s funny that these are all the things that taste good to her now. She never wants candy or snacks, which is awesome, but so unlike what she used to always want. We got her food and headed home. I think she only ate 3 carrots and 2 celery sticks and the whole thing of grapefruit. Haha 🙂

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2 thoughts on “Interim Maintenance 1, Days 12-21

  1. Thanks for always including all of the details in these posts. As your mom, I think I am aware of everything that is going on, but when I read these posts I realize there are a few things I don’t know. I think this blog is such a gift to so many people. I love you, Bug!

    Liked by 1 person

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