Friday, September 2, 2011

Delayed Intensification-sounds bad right?

Well here it is I've been dreading it for...well since we finished the first dreaded phase of treatment.  This is basically round two but lasts 8 weeks.  Her first day was Tuesday and I am slow in posting...so I better hurry since she's in clinic right now.  She had ANOTHER spinal tap.  Seriously I'm ready to be done with them.  I'm losing count it's either the 9th or 10th.  She did great with the fasting though...she had a two and a half week break from clinic.  The longest yet and going back I think she had forgotten a lot and was much more traumatized by it all again...or so Todd says since I was down with Tyson getting his ultrasound for the worst parts.  Her counts were awesome...probably the last time we'll see the for a while they anticipate her needing a few transfusions this phase...it's part of the plan knock everything out in hopes of taking the cancer with it.  She also had some vincristine and her first dose of "red death" or "red devil" i guess they call it both.  It's real name is Doxirubicin...either way I don't really like the thought of it even in small doses.  It will probably cause her to lose her hair within the next week.  And we had to have the ECHO done before to get a baseline of her heart so they know if it causes any damage.  She'll have to have those every 5 years for life I believe after having this drug. 
Not sure on exact clinic stats this time but her ANC-2300. I think her hemoglobing was 12.5 and her platelets were around 348,000. 
She wasn't really interested in her traditional cup of  noodles after a sedation.  But she was really into the froot loops I found.  She ate the whole bag and of course starting saying and signing more.  And nothing else would satisfy.

She wanted Dad to lay by her of course.
We started the steroids Tuesday night and it has been a REAL challenge this time.  She is bigger, stronger and smarter than before...and has more energy.  She is determined to spit every drop of them out causing much stress for her pharmacist Dad who is very concerned about patient compliance...and the possibily of recurrent cancer from her not getting all her meds it.  We've tried MANY different ways already in just 3 days and so far the best is mixed in strawberry syrup I got yesterday to try.  Her eyes have been looking more and more heavey and darker underneath.  You can just tell that she doesn't feel as well as she usually does, much more lethargic and she's getting the steroid mood swings and irritability. When I look at her I usually feel two emotions very strongly I feel very sad that she has to go through all of this and I just love her so much I just want to be next to her all the time and hold her. 

So this morning I got up at 1 am to feed Tyson after going to bed around 11:30 because I had to pack for both of them for clinic...and to my delightful surprise I had a bit of a sore throat.  Ok I lied I was not happy about it.  So Todd ended up going with his Mom to clinic while I stayed home wishing I was there and that I didn't have to worry about getting her and the other kids at clinic sick...I was told to sleep because of my obvious lack of sleep with a newborn but I never actually fell asleep.  partly because Tyson doesn't like to be put down especially during the day and partly because I couldn't stop thinking about her and how things were going.  So enough about me...she just got home from clinic and I doubt she had much fun.  But she was a trooper again and got another dose of peg asparaginase.  They had to wait for 2 hours after because there is a risk of anaphylaxis...and we have to watch her for a day to make sure it doesn't happen.  Yeah I hate this drug.  No clinic stats they didn't do a blood test for the first time in clinic prob cause we were just there Tuesday and it's not count dependants this next 4 weeks. 

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