Lily's frog hopped from her belly to her throat and is now biting it. Her fever broke this morning so we avoided an admission to the spa on Tripler Mountain. They did a strep test, but we won't know the results for a day or so. I don't think it's strep because the other kiddos all got better within a couple of days, but we shall see. All in all, we hung out for 6 hours and don't really have much more information than when we went in. It's not a bad thing to not be the most pressing case of the day.
Our primary oncologist is out of the country for a few more weeks. Unfortunately there was no definitive stop set for Lily's mitotane when she left. The pharmacy says to finish the prescription- but that takes us to July 17th and that's more than 3 weeks longer than I calculated. SO of course I came home, researched, recalculated and have decided that this week is it. The study dictates 8 months of mitotane. 4 weeks in a month, 32 weeks of mitotane. We started Nov .17. Theoretically then, Monday ends week 32 of this journey. I'm sticking to it. I specifically asked the doc months ago if they would extend the mitotane if she didn't reach therapeutic levels because she was no where near therapeutic levels and she said no, she may not reach therapeutic levels- but 32 weeks was it. I'm pretty sure the pharmacy is not going off of the clinical trial protocol, which I reread- but were going off of the mitotane they ordered.
All of our usual friends came by to see Lily. Miss Julie and Ms. Barb spent lots of time reading to and distracting her. The access went well, despite her having to get 2 pokes. The first one wouldn't return blood so it had to be redone. I am pretty convinced that she feels the poke- but it's not a horrific pain- it's mostly scary for her- and rightly so. She still screamed like a maniac, but all in all there was no kicking or thrashing. She ended up getting a course of IV antibiotics, just in case and we got to go hang out in the pharmacy for amoxicillan- just in case.
We rounded out the visit with our endocrinologist who will be seeing us back in a couple of weeks. We will redo a bone age for Lily and they ran a panel of hormone tests to see if we need to put her on hormone therapy to stop whatever changes are starting.
It was a long day, I definitely do not miss doing this 3 times a week- sheesh. I do miss our friends we have made there and it was so nice that they all go out of their way to spend extra time with us while we were there.
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Hey, Lily - Get that frog out of your throat! Ribbit, ribbit! Stop hopping around until you feel better. Thanks for the update. Love to all - Grandma Allen
ReplyDeleteHi Jen and crew,
ReplyDelete32 Weeks sounds like a good number:) (Like I know anything?!)
It's so great that you are so on top of your treatment for Ms. Lily and soon your 4th of July--End of Chemo celebration can begin:)
We are very happy for you all. I hope Lily feels better soon.
Love, Tracy and our crew:)