Sunday, November 30, 2008
1) Manda's numbers are back up in a safe range which means she got to play with her cousins this weekend AND she can start chemo on Monday.
2) The latest AFP (the cancer marker in her blood) is 11.6!!! Normal is 8 or less. We're getting closer!
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Monday, November 24, 2008
Fever. She is hyper. Running, jumping, swinging, climbing and getting into
trouble...on purpose. She is unhappy and letting us know it. The numbers
today were better than Thursday but not good enough to start chemo today.
Her ANC is back up to above quarantine levels so she should be able to
safely mix and mingle with family for the Thanksgiving Holiday. However,
her white blood cell count and platelets are still a bit on the low side.
She will get another shot of Neupogen on Wednesday night and we will check
her counts again on Friday morning. That should be able to tell us if we
can start the chemo next week Monday. This of course will push back the
entire schedule and land us in the hospital for her inpatient chemo the week
after Christmas. The exact week I was trying to avoid. But, we do what we
have to do, don't we? So, between Daddy and Grammy and me we will get
through the week and I will get to the office and she will once again be
just fine. (Daddy may need a little extra encouragement as the last time he
was left alone with her in the hospital she managed to step on her IV tube
and de-access herself, but he's a big boy. He'll be Ok.) They drew blood to
check the AFP (cancer marker in the blood) but we have not heard back from
the lab on that one yet.
Speaking of Daddy. We are celebrating our 8th wedding anniversary tomorrow.
The first five years seem to all blur together with bits and pieces sticking
out here and there. The last three years? Holy Cow, what a ride! I give
him the credit for my own sanity. He keeps me grounded, keeps things in
perspective, keeps me laughing and goes the extra mile to make life easier
for me. I wouldn't trade him, or our life together with all of its ups and
downs, for anything. I honestly am thankful for my life and the amazing
people in it.
Thursday, November 20, 2008
So her hemoglobin and platelets were so low they gave her a transfusion. They also said she should continue getting the neupogen shots everyday in hopes that her numbers will go bacK up. Sounds great in theory except we used our last shot last night and the pharmacy did not get the order from the clinic before they closed today. They could not fill the Rx and we now have no shot to administer. The after-hours-on-call-doctor sent over the order and the shots should be delivered first thing in the morning. He will check with our oncologist to see if we should give her two shots tomorrow to catch up after missing her dose tonight. She will be in quarantine until we get her numbers back on Monday. They want her ANC to be above 1000. Amanda's today was 198. Just scary low. Keep those germs away! Oh yeah, and if her numbers don't go up dramatically they will postpone the chemo until her body is better able to handle it. This could set us back an entire week, which would then set her inpatient chemo back a week and wind us in the hospital exactly when I was trying to avoid it. *sigh* Hope for the best and deal with things as they come I guess.
Now, because I always look for the silver lining, I shall leave you with the two positive things from our evening together. #1) Since there was no shot to give, we were able to yell, ''no pokes!" when it was time for jammies. #2) I read her a story about the bear who stays up for Christmas, and when I pointed out Santa Clause she started singing Jingle Bells! I didn't even know she knew that song!
Saturday, November 15, 2008
Anyway, as Manda continues to request mustard and pretzels, I don't think she has mouth sores.
Tuesday, November 11, 2008
We spoke to the oncologist today about what we are looking at for the next couple of months. She originally wanted to "save" our Thanksgiving so she had us scheduled to do a week of outpatient chemo the first week of December. This would then put us inpatient again the week after Christmas. In her theory that meant her numbers would be high and she would be home for Christmas and able to enjoy the holiday feeling well, etc. However, the timing would NOT be good for my office as my boss and his wife have a scheduled c-section on the 29th, and it would not go over well if I wanted to be gone at the same time. SO, after a quick round of What Ifs with the doctor we agreed she will do the outpatient chemo during the week of Thanksgiving. This means coming into the hospital on Thanksgiving Day but it will only be for about an hour and a half and, to be honest, what better way to fully appreciate that for which we are truly thankful? Then, we will do the inpatient the week before Christmas, getting out on Christmas Eve. She should be just as active and well as she is now (cannot keep the kid still) so we should be able to enjoy our holiday celebrations with only a reminder to family and friends that if they are feeling unwell or have been exposed to anything they should please keep the Hell away from her. Really, I think it is a win-win. She gets the treatment she needs a week sooner than she would have, and I can be in the office when they need me. Yay!
The oncologist also said not to feel apprehensive about being inpatient that close to Christmas. She said there will be people coming by with gifts and treats all the time. She will not feel deprived of anything. I can fully believe this as just sitting here today minding our own business we were visited by The Rockettes and some therapy dogs! The Rockettes arrived just as Manda was drifting off for her nap so they called me out into the hallway and gave me a Barbie-like doll (a Rockette obviously) and took my picture with the girls. I don't feel like a fashion-plate on a good day, but after spending a week in the hospital and wearing jeans and a T-shirt next to these ladies dressed in sparkly gold mini-dresses and enough make-up to paint my house, I was feeling a bit under dressed for the occasion. But, I cannot think of another time in my life that I will get to have my picture taken with actual Rockettes so...
Looking forward to sleeping in my own bed tomorrow night instead of the pull-out chair next to Manda's crib. Someday I will write a review of all the different sitting/sleeping devices I have used during our journey through treatment. I actually have a preference for one particular couch, but I didn't know that until I had tried a couple other options. Ok, going to sleep now, it is going to be a long day tomorrow.
Monday, November 10, 2008
* "big huge scary deal" is a quote I stole from Dave Ramsey. I don't think he'll mind me using it.
Friday, November 7, 2008
Aside from the obvious hyper nature of the girl, (I swear they put caffeine in the IV) she is doing really well. The AFP, the cancer marker we are watching in her blood work, has continued to drop post-surgery. Prior to surgery it was 16,450. Immediately after surgery it was 883. Today's number was 50! Our goal is <8. We will continue the aggressive chemo for two or three rounds after we reach that "normal" number, then they will do maintainance chemo in the hopes that it won't come back. We are getting closer.
Now, we shall settle in for the weekend. She is getting the Cisplatin now. That will finish about 1am. Then she is simply hydrated for four hours and the Adriamycin starts around 5am. This time it will be a full four day drip so it will finish on Tuesday at 5am. We should be able to head home that afternoon. She'll do fine, but wish me luck in keeping up with her!
Wednesday, November 5, 2008