Delayed Intensification, Days 29-43

The last two weeks have been uneventful, which is just what we wanted them to be! We expected this to be a horrible round, full of vomiting and pain. To the contrary, Liv has been happy and healthy and had zero nauseousness or pain! The last few days she has been a little emotional and tired, but that is honestly it!

Her home health nurse came last week Tuesday-Friday and this week Tuesday-Friday to administer her chemo. She came at 8:30am each day. It was great to get the chemo in the morning and not have to worry about it the rest of the day. She also took a chemo pill at about 4pm each day. She couldn’t eat for two hours before the pill and one hour after.

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Nurse Tracey came ever morning, Tuesday-Friday

The first week of this phase of this round her counts were high enough to get out a little bit. We tried to do a few fun things out of the house those days.

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We visited Yia Yia at her school the week before school started to see her cute room!
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We LOVED watching the Olympics, it was so fun to all snuggle up on the couch and cheer for team USA!

Primary Children’s Hematology/Oncology Clinic throws a big summer picnic each summer for the patients and their families. It was at Sugar House Park and we had a blast! Luckily Liv’s counts were still high enough that day that we didn’t need to worry too much about her being around other people, plus it was outside which makes it a lot easier to avoid germs. It was such a fun party and I’m so glad we got to go!

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After a few days, her counts dropped down again. We got the phone call with counts and these were the numbers:

ANC 400

WBC .8

Hemoglobin 8.8

Hematocrit 26.6

Platelets 242,000

The rest of the two weeks we just laid low and hung out in the house because her counts were too low to be around very many people. We did have my mom’s birthday party here one night and she got to see her aunts and uncles and grandparents and great grandparents. She was most excited to get to play with her cousin 🙂

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She’s been doing a lot of art and has enjoyed getting better at writing her letters. She asked me how to spell flowers and I was shocked when she showed me her dictation! She did a great job!
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She loves to do makeovers as one of our homebound activities. She’s gotten some fun packages in the mail with makeup and jewelry and clothes. Everyone has been so nice!

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Birthday party for grandma. She loved playing with her cousin!

Today we had clinic. We didn’t have to go in for chemo, in fact we would have had a four week break from clinic this round, but Liv has her Septra allergy so we had to go in to get her Pentamidine. When she got into clinic this morning they accessed her port and drew labs. We were pretty sure her hemoglobin was going to be too low and she would need a blood transfusion. She did GREAT getting accessed today! She didn’t whimper or whine at all when I put her numbing cream on this morning when we left, she didn’t whimper or cry when the nurse was cleaning the area, and she only whimpered for a second when the nurse put the needle in! I was so proud of her!

After labs, they sent her back to the infusion area to wait for her Pentamidine. We waited about 30 mins before the pharmacy got it up to us. We played some games during this time and she was really happy. About the time that the Pentamidine came up, the lab results came back and she was low in her hemoglobin so we had to stay for a blood transfusion. Boo! Blood transfusions take a long time because they have to cross match Liv’s actual blood with blood that is her blood type and see if it reacts poorly before they actually give it to her.

Labs:

ANC 600

WBC .7

Hemoglobin 7.1

Hematocrit 20.8

Platelets 58,000

After the Pent had been running for about ten minutes, Liv got really emotional and started saying she was going to throw up. I could tell she was really nauseous, which was weird because she has never gotten nauseous from Pent before. They ordered IV Zofran for her and she watched a show on her iPad for a little while.

After 30 mins she got really sad again and I was worried about how I was going to keep her happy for a few more hours. Luckily, right about that time, her favorite volunteer came and had a table of crafts set up! Liv was so excited and I was SO excited because it meant I had someone else to help me distract her 🙂 Liv played in shaving cream and paint with Frozen figurines for three straight hours with Aimee and I was able to go down and grab lunch from the cafeteria and then come back and just relax! It was the best clinic EVER! Deaccess went great and she was happy as can be coming home. She also has some more color to her face 🙂

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Happy, comfy, and pale 🙂
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Playing games while we waited for Pentamidine
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Nauseous after ten mins on Pent
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Super sad and not feeling well for a few mins until they gave her Zofran
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Yay for Aimee!
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Shaving cream, paint, and Frozen characters!
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Aimee is the only person Liv will talk to or interact with. It is so fun for me to have her be her cute little self with someone at the hospital!
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