18/05/2024
Henley update (long post):
I’ve been terrible about updating, we have a pretty busy schedule and I’ve been slacking!
A couple weeks ago Henley had her final spinal tap!! She had low blood counts so they put her on a chemo hold for a week to recheck blood. The following Thursday we rechecked and her counts were still dropping so they decided to hold one more week.
Earlier this week her and Berkley had come down with a stomach bug but we thought they were in the clear and sent them to school Wednesday. Thursday morning Henley woke up with a 101.4 fever and feeling miserable. Called the doctor at Devos and they wanted us to come down per normal protocol. They ran a bunch of tests and took blood work in the ER at Devos where we waited for 6 hours before finally being admitted to a room. Her counts had dropped extremely low and all testing came back negative but they decided to start her on an IV antibiotic every 8 hours and continue to treat her fever.
Thursday night she slept terrible, fever wouldn’t break even with medication, and she had fevers on and off all day Friday. I saw that her top row of gums were swollen and extremely red which explained why she refused to eat. This poor girl never tells us when she is in pain so I had no idea about her mouth until I saw her smiling when she was FaceTiming Berkley.
They ran another viral panel to rule out any viruses and they all came back negative so they released her from isolation and we spent a good portion of the day in the playroom. It was nice to see her have a little energy and get excited about toys.
Friday night she was fever free all night which was amazing but she didn’t sleep all that well, she would keep waking up crying out in pain. She slept in until about 10am today, she has had a couple bites of breakfast and her swelling has gone down in her mouth. We are still waiting to hear from a doctor to see if she can go home today since her counts are going up.
To all my prayer warriors, please help me pray that Henley’s counts continue to improve and that the blood cultures continue to be negative for bacterial growth. We are hoping to go home today, she needs some fresh air and to enjoy some of this beautiful weather we are having.
⭐️ Special thanks to Shelly for coming on such short notice to grab Berkley so I could take Henley to the hospital, and to my sister for taking the day off yesterday to watch her as well. HUGE thanks to my boss Sam for driving all the way to Grand Rapids to bring me a bag of clothes and Henley’s wagon since we had to leave so abruptly. And to everyone who continues to check in on Henley and I. We appreciate all of you so much ❤️❤️❤️
