Relapse Cycle 2 - Day 2

Thursday, October 1st

Avery had a good night Wednesday night and slept as well as you can in the hospital. She awoke in a good mood and spent the morning laughing, being silly, making slime, and building Legos.

She received her first dose of Cyclophosphamide at 10:20 followed by Irinotecan. Her first 6 hr sodium check was around 4:30pm, and it came back at 138(which is good). As the afternoon progressed, however, she started to feel the effects of the chemo. She was becoming tired and started having bad stomach cramps. She received her oral chemo at 8pm. She complained of her head hurting a little, but managed to fall asleep around 8:30. Her 8:30 sodium check came back at 134.

All of these symptoms fit with the beginning of our previous experience. I am so thankful for our wonderful nursing staff who had Avery’s back and helped raise concerns in a very timely manner. Given her history and our fear of a repeat scenario, I pushed for more precautions to be taken. Thankfully the team agreed.

We were moved to the Special Care unit a little after midnight. They will check vitals and sodium levels every 2 hours. In the situation where she needs the hypertonic solution (3%), we are right across from the PICU and can be quickly transported.

Tomorrow she will receive her last dose of Cyclophosphamide. She will continue with oral chemo for an additional 5 days.

I was able to discuss yesterday's issues with Patient Relations and multiple other teams today. We hope that this can be taken as a learning experience to save another family the same stress.

Please continue to pray for:

- Relief from stomach cramps

- Safe sodium levels

- Rest