Round 6

After our marathon scan day on Tuesday, we were admitted again on Wednesday for one more round of methotrexate before surgery. Additionally, we needed to give the NG tube another go. The 2nd attempt had the same result as the first, unfortunately. (It stayed in longer, though. Progress!)

However, let's start with a scan update. Charlotte's PET showed a significantly lighter mass on the right knee than her original scan. A clear sign that the chemo is working! The spot in her left knee, along with the spot in her lung, showed no growth. All of this news allows our surgical plan to stay the same. Phew!

Instead of starting with the NG tube first thing, we opted to focus on chemo only at the beginning of our stay. We got some laps in, found the scavenger hunt animals, and Charlotte collected her next medal in the Go Your Distance challenge - a 10K!

Thursday was tube day. Charlotte took the news relatively well and was more at peace with the situation when she learned she would be sedated once again. It's not the ideal practice - the team doesn't want a patient to become reliant on sedation. (Although, honestly, placement without it is brutal.) Compared to attempt #2, she was less resistant to the medication and settled pretty quickly. We were feeling hopeful!

But then our nurse Laura let us know she suspected a kink in the tube, as she wasn't able to flush it as easily as she should have been able to. While Charlotte was still sedated, she pulled it out a bit to try and loosen the kink. It appeared to have helped, but not all the way. An x-ray confirmed it was still kinked. Because of course it was! Laura quickly went back to work and, with sedation wearing off, was able to straighten the tube. Again, phew!

Charlotte woke up and took it easy for the afternoon. Slow nibbles, minimal talking, and was careful getting up & out of her bed. She already knew the importance and benefits of the NG tube, so to see her getting used to it was a big relief. We don't know if there was slight movement to trigger her gag reflex or what, but sadly, the third time was not the charm. Charlotte was definitely disappointed as she could feel progress, but she knows it's not her fault! Originally we were going to wait until surgery to try again, but our team is encouraging us to give it another go today while Charlotte's body is more accustomed to the sensation. Like with most things about this process, she isn't jazzed, but also isn't vehemently opposed.

We're going to pause the NG discussion so she can go to group school this morning, where she will hopefully see a new friend from down the hall. The best part of this admission has been connecting with a family we've seen each time, only to learn their daughter has the exact same diagnosis as Charlotte. A tumor in almost the exact same spot. How nice to have found folks who know very well this path we're walking on.