Round 1 Down

Wow this week flew by! Yes a strange comment considering we were living in ICU for 4 days. 

Jesse’s 4th day of antibody passed quietly. She did spike a fever, but overall she played some and slept some. 

Her doctor stopped by in blue before she awoke. When Jesse woke up, I told her he’d been by. “Not in red,” was the response. I told her no, she then said “Blue?” And when I confirmed this she was very pleased.

He told me that he was working of filing paperwork with the FDA for her to get the Accutane. This will help mature her tumor cells. The reason the FDA is involved is due to this also being an acne drug.

It is a very powerful drug causing serious birth defects if taken when pregnant. Users have to have blood tests monthly and prove 2 forms of birth control to get it if child bearing age.

Our doctor has to verify that he has counseled us on how to make sure she doesn’t get pregnant before they will give it to her. He also told me that the FDA was planning to pull it from the market until oncologists screamed they needed it too. And the FDA still doesn’t consider Accutane as being used to fight cancer. (He started the conversation with don’t get me started on the FDA… I wasn’t going to ask, but he went there.)

A red shirt teenage volunteer named Andrew stopped by to play. She thought he was great because she could tell him what to do ( he let her get away with that!).

Mike was able to come visit. Jesse stayed awake until he arrived, and then passed out. She woke around 8pm. 

I told her they were moving us upstairs. Bless her heart she tried to stay awake until that happened, but she zonked at 11:30pm.

Around 12:00am, we headed up to 8B for the night or possibly longer. Since she was running a fever, I didn’t want to be to optimistic that we were heading home in the morning. But if I have to be sleeping in CHKD, I’d rather sleep on 8B 🙂

I can’t tell you how great it was to have a bathroom and a window! And to see all our friends. The nurses from 8B really impressed me with coming down to see Jesse when they could during our stay in ICU.  ( The nurses in ICU treated us very well too 🙂  )

Around 2:30am, I zonked in the bed with Jesse. It felt so good to lay down next to her and hear her breath.

At 8, our doctor was in. He told me they would give her rocefrin and send us home. I was surprised. My silly rear forgot to ask what policy was if she ran a fever.

Our nurse offered to change Jesse’s tape. It was so nice to have a break 🙂 She also asked Child life to come by and distract Jesse. They did a great job because she only said “Ow that hurts” at the usual steps of the tape change, removal and cleaning. 

By 11:30am, we were in the car and on our way. I stopped in Suffolk to check my tire pressure because the sensor light was on… Don’t know why.. All was fine.

We were home by 1:00pm. Around 3, Jesse looked a little funny to me. I took her temperature: 99F. This is when the question about fever policy in a kid with a higher ANC crossed my mind. I called our nurse. 

Since she has had the rocefrin, she is good for 24 hours. I am praying that she doesn’t run a fever tomorrow.

At 5:00, it was 99.3F, but her arms and checks felt cool. Craziness.

Mike suggested to the girls that we have dinner outside… It was so nice. We stayed out for about two hours. Jesse really perked up, and they both had a blast swing and driving the gator.

When we came in, she wanted to get in the tub with Chris. This was the first time she has gotten in the tub since before March 28th. I have been sponging her off… I was concerned that when we could go back to baths she balk, but she had a blast. The only part she hated was removing the Aqua Guard that protects her CVL.

Thank you for all the prayers. They have meant so much and are a great comfort. 🙂