Friday, March 20, 2009

An Update

11:11 AM
A quick update while she takes a morning nap...
She slept fairly well over night (as did I, considering the accomodations) and only woke a few times. Quickly went back to sleep. This morning she was pretty grumpy but managed to down some milkshake and a little cereal. Child life brought me coffee (AMEN!) and took her for a fun wagon ride tour of all the wildlife pictures on the unit.
We returned to the room for a Dora Fest and she fell asleep after about 5 episodes...
Most of her levels seems to be coming up as hoped/expected. The one big question right now is that the NP yesterday mentioned "oh, we've put in the order for her vincristine tomorrow" (another chemo drug) but I didn't remember anything in the protocol about her getting drugs in the interim weeks NOR did our regular NP or Dr. Khan say anything about coming back for another dose of chemo this week. So I'm confused. I have asked them to page the docs (Khan is out of town today) and hopefully we will get clarification. My copy of the official protocol is at home (of course). Someone had emailed me a copy but I think I deleted it. So if anyone has one handy, let me know (a few of you know the protocol we are on and are following our know the drill).
I'm not usually one to "question" the docs but at the same time I feel like I stay pretty up on her protocol and this just doesn't sound familiar. I know that they probably double check everything BUT I also know that they deal with a lot of patients with a lot of possibly very similar protocols. Doesn't hurt to check, right? I don't mind getting a reptuation as a "difficult mom".
Lots more hair gone this AM. Noticed a few eyelashes falling out too.
Trying to enjoy a few minutes of peace..
Happy Friday and Happy Spring, everyone!

2:34 PM Update
Well, the update on the Vincristine is that yes, it is indeed part of her protocol to get it on days 8 and 15 of each round. What they couldn't seem to tell me was whether she received it on day 8 (since we were still in the hosptial on day 8) and if not, why she did not receive the day 8 dose. Apparently there is some flexibility within the protocol but I was deeply disturbed by the fact that they neither knew whether or not the day 8 dose had even been given or if not why it had not been noted. As someone who has worked in health care, I am all too familiar with the rigors and requirements of documentation. So needless to say, I made a little "stink" over this discrepancy. The doctor (not Dr. Khan as he is out of town) apologized sincerely and was quite red faced (and stammering a bit) over what she termed "some negligence" on their part. She did, however, proceed to explain that they would administer the Vincristine and count this as her "day 15" for this cycle.
Some of you have asked why she would receive more chemo if her counts are low but there are different requirements for the administration of different chemo drugs and Vincristine is not blood count dependent. It is more poop dependent and since we had poop, we are ok to go with this dose. They are actually giving her 75% of the recommended dose anyway.
We will have to continue to monitor her counts (which seem to keep going up. yay!) and there is definite possibility that the setback this week may delay the start of her next round of chemo. We will have to wait and see, of course. We also currently have our next MRI scheduled for mid-April.
The rest of our day has included a walk (her riding in the wagon), visits from an adorable therapy dog and our neighbor Mr. Fred who brought news of the Ashland Variety Show, many get well cards from his children's choir, and an adorably soft (and HUGE) teddy bear. All of these events have brought smiles to Charlotte's day.
She also just downed a small bag of M&Ms. Hooray for calories!
With any luck we might go home by tomorrow or Sunday.
All for now. Rachel

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