Interim Maintenance Days 32-42

Liv is still doing great! The only thing we see from her is that she gets extremely emotional when she is tired. We’ve discovered that we can’t let her get too tired, or stay up too late, or she gets to a point that we can’t bring her back from. She will just cry and cry and nothing can bring her out of that cycle. Other than that, she really is pretty happy during the day and rarely complains of not feeling well. I know I say it all the time, but we are so grateful and so blessed that she has handled this round so well and has been able to enjoy this first part of summer.

Here are some fun things we have done over the last week and a half:

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Finding Dory as a family!

I got called to teach the Sunbeams at church. This has been great because this is Liv’s age group, so I have had her come to my class with me. I have to be very careful to sanitize her chair and sit her away from the other kids. I sanitize her hands a lot and she doesn’t touch anything. She has really enjoyed being back at church!

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On Father’s Day, Liv colored a tie for Rick
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Father’s Day with her daddy!

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Father’s Day BBQ at Great Grandpa O’s house
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Snuggled up with Great Grandpa Overstreet

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Daci and Street started swimming lessons this week, we didn’t put Liv in them because we were worried about the added germs at the public pool. She was bummed to  not be in lessons, but she had fun watching with Stade and I.

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She loves to push Stade in his stroller
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Swim time selfies!

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Liv came in my room before swim on the third day and I could tell something was making her upset. I asked her what was wrong and she covered her face and burst into tears. Daci and Street were busy getting their suits on and I could tell it was making her sad. I asked her if she was sad that she wasn’t in swimming lessons and she shook her head “yes” and cried even harder. I told her I would work out a special mommy/daughter date to her aunt’s pool to work on what Street was learning in his lessons. We went the next day and she LOVED it! It was really fun spending one on one time with her that wasn’t at a doctor’s office 🙂

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Liv hasn’t been able to go to public parks since she was diagnosed in March. We had a few people surprise us with an amazing swing set for our backyard. We were beyond grateful and overwhelmed with the kindness that was shown. We had it set up this week and the kids have had a blast. Livvi is so happy that she is able to play on a park and I’m so grateful I don’t have to worry about her catching something.

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We had a belated Father’s Day BBQ for Rick’s dad. All the Roberts cousins were there and we got to snap a cute pic of them all 🙂

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Liv had her blood drawn at home. It was a Sunday this time so we didn’t find out what her counts were before we went in. We knew we would have to go in anyway so that she could get her Pentamidine though, so we weren’t too worried about her not making counts and us driving up there for no reason.

Clinic was interesting this time. She was the happiest I have ever seen her there when we first got there. She talked to the nurses, helped push her own meds in the IV, responded to her doctor, and happily played with toys in the infusion room. We found out that her ANC was 1800! That is great for being on chemo and meant that she could get her next dose.

We had to wait like an hour in the infusion area because her chemo wasn’t mixed yet. When they were ready to give her Pentamidine, they started her drip and within five minutes she was so tired she could barely keep her eyes open. I asked the nurse if they had given her Benadryl before they started the Pentamidine. The nurse said yes, that it was ordered to give to her. They order it every time to have on hand because Pentamidine can have some side effects that are like an allergic reaction, Liv has had it four times now though without any reaction so we don’t usually give her the Benadryl. The nurses usually say, “We have Benadryl ordered, do they usually give it to her?” and I always tell them that she does fine without it. This time they just gave it to her, which they didn’t do anything wrong, but it kinda messed with Liv in a way that I never want to have happen again. Haha. She got so so tired and it turned her into her really sad, withdrawn and emotional state. She was crying for me to get her games to play, but all the board games were really hard to play with her while we were sitting in the infusion chair, and she was way too tired to even sit up. I tried to get her to lay back and watch a show, or play games on her iPad, but she just was not having it. It was a really long hour and a half while she received her Pentamidine and chemo. I couldn’t wait for it to be over!

One nice thing was that a friend I have made up there was also there at the same time! It’s pretty rare to see people you know because everyone goes up for treatment on different days, so it was really fun to see her and chat with her for a bit!

Once her chemo was done we got in the car and she was out cold within about 30 seconds. Haha. Note to self: ALWAYS tell the nurses before Pentamidine that we don’t need Benadryl 😉

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She helped push her meds into her port
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She loves to read the pop up books at the hospital
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Liv with  her doctor
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Playing back in Infusion before the meds started
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Her chemo and other meds
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right after the Benadryl hit
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Insisting we play games, when she was fighting to keep her eyes open. She is very STUBBORN 🙂
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She flipped out getting her port out, but she was pretty excited about her bandaid this time

 

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passed out!

Another week, another clinic down! She gets a two week break from clinic, and then we start her next round on July 12th. This round will be really hard on her little body, her counts will drop to zero, she won’t be able to go out of the house much, if at all, she will most likely be very nauseous from the chemo, she will be on steroids again (heaven help us!) and could have other nasty side effects. We pray that her strong body will handle it better than most. We love you all! Thanks for your support!

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