3-9-12
Things are deteriorating rapidly. The doctor wants Nina back in the hospital. Her heart-rate is high, and while that's normal for Nina, this is on the high end. She's also had a mid-grade <?> fever a couple of times today. She's very disappointed, but I think it was the right call. She can't move at all, and falls in and out of sleep even while you're talking to her. I hope that this is just something simple that can be fixed. She is incapable of using her cell phone at the moment, so texts or emails will probably not get read for awhile.
Also, people are asking me about the tumor and whether it is shrinking or not. The answer is that I don't know. It is still there. They notice it shrinking when on the chemo, but it quickly grows back. So I think the plan is another dose of Brentuxamab with daily (M-F) chemo until April.
3-8-12
Things are deteriorating rapidly. The doctor wants Nina back in the hospital. Her heart-rate is high, and while that's normal for Nina, this is on the high end. She's also had a mid-grade <?> fever a couple of times today. She's very disappointed, but I think it was the right call. She can't move at all, and falls in and out of sleep even while you're talking to her. I hope that this is just something simple that can be fixed. She is incapable of using her cell phone at the moment, so texts or emails will probably not get read for awhile.
Also, people are asking me about the tumor and whether it is shrinking or not. The answer is that I don't know. It is still there. They notice it shrinking when on the chemo, but it quickly grows back. So I think the plan is another dose of Brentuxamab with daily (M-F) chemo until April.
3-8-12
No use in sugar coating things. It was a rough night at home. Nina is really getting very weak. She needs assistance doing everything. She can barely sit up in bed. Last night she had a fall going from the bed to the potty chair. Even in her condition she's still independent minded and refuses to ask for help. She'll say things like "I'm going to get some ice water" when in fact she can't move out of bed. It's her way of asking for things.
As much as I hate to say it, I don't think she was ready to leave the hospital. She's in rough shape right now and hopefully things will improve over time.
----------------------------- Not a whole lot to report. Nina was supposed to be released on Monday, and then it became Tuesday (today), but now it's looking like Wednesday. They wanted to get in a couple of units of blood and some platelets. It wound up taking almost all day, so they postponed the release until Wednesday.
The current plan was for a week of rest at home, and daily outpatient radiation treatment, and then she'll go back in on Tuesday for a 2nd round of Brentuxamab followed by 3 days of monitoring, and then home again. That's the plan. It's MUCH easier checking into this hospital than it is to be released.
Nina is doing ok. This has been the longest stretch in the hospital, and she's very sick of it and desperately wants to go home. Her appetite is very poor right now. Her daily diet is down to a half a container of Odwalla protein drink and a few popscicles. Because she is on IV nutrition, it's not a huge deal, but I'm hoping that when she comes home, I can find her things that are attractive enough for her to try.
Finally, if you are signed up and getting the e-mail reports, there is a 24 hour delay between the time a post is made and the e-mail is sent out. Very frustrating, and there is no way to adjust that, but I just wanted to mention that. You can also manually go to ninadeckert.com to see if there is anything new.
Sam
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