October 9, 2016


Maintenance Day 548: An Improvement

Thursday: Thursday was a scary day. All day I was on the phone with Brock. Her vitals were back and forth all day, her fever was up down. At 4pm, I finally left work and raced down to the hospital. Her fever was 104, BP was 60/30 and her HR was 212. Brock wasn’t feeling well so I decided to stay at the hospital myself Thursday night.

Friday: Overnight, Scarlett started bleeding. Her GI tract is so inflamed and tired. Throughout the day on Friday, the bleeding grew worse and worse. She was passing blood clots every time she went potty. Of course, mama had to work and daddy wasn’t feeling well so her worst day fell on Auntie Megan and Aunt Roberta. It was scary and exhausting. At 4am, her Hgb was 9.7. By early afternoon, it was 8.8 and by 9pm it was 8.2. She received a blood transfusion overnight. By morning, her Hgb was back up to 13.

Saturday: today seemed to be a turn around. The bleeding is nearly gone. Every once in a while, she has a few flecks of blood but nothing really visible. Her ANC is 850 and white count 4.5. Her fever has topped at 100.2. She did physical therapy today, ate, drank, played with toys and talked! Hearing her talk is the biggest sign of improvement. Saturday night, I fell asleep before Scarlett. She just sat next to me in bed talking to herself and laughing.

Sunday: This morning, Scarlett’s lab results were awesome! Her Hgb is still 13, her platelets are over 100 and her ANC is 3450. The plan is to allow her ANC to remain high and fight the infection for a while before restarting her chemo. She will most likely be here until next Saturday when we will see if she still has cryptosporidium. She cannot go to school again until she tests negative. I don’t really expect this next test to be negative but it would be amazing if it was! Our goal today is to get up and moving, drink enough water to stop her IV (it makes her go a lot overnight) and to not have any accidents today. It’s asking a lot but it all needs to be done before we can go home. Tate and Evie came to visit today. Evie and Scarlett played with the dollhouse for close to an hour. It was so wonderful to hear both of their voices again. Tate sat by me for quite a while. I miss them together so much. Overall, Scarlett’s day went well. Hopefully every day will get better.

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