March for Babies

Friday, September 19, 2008

A is for Adriamycin

We are watching Elmo...again.  That is okay, she is calm and I think getting ready to fall asleep.  Both good things.
Today was a pretty good day.  Of course, she slept through most of it.  Actually, everything was fine except that when they started the chemo this morning they shortened the tubing between the IV pole and Amanda.  We usually get her an extension because it is so hard to keep up with her and she gets wrapped up in the shorter tubing.  We inquired about possibly getting a longer tube and they couldn't do it since the IV had already started and all of the flow rates through the IV pump were based on the length of the shorter tubing.  So, we are dealing with it. It is an inconvenience but mostly for those of us running after her. 
The good news is that the group of doctors discussed Manda's case and decided that since she has never had the Adriamycin before they would start her on a three-day drip instead of the four-days.  The level of toxicity will be a bit less and they can see how she reacts to it before surgery.  If they decide to be aggressive in treatment after surgery they will try and do the longer drip.  This particular drug will help prevent the disease from reoccurring in the future.  This makes us very willing to put up with the added side effects, but there are added side effects with this one that we have not dealt with during the past two cycles of chemo.  The first thing we are looking for is sores in her mouth.  If it hurts to eat or drink she will stop doing both.  Not so good for one's health.  She might also develop fevers and tummy troubles.  The new med she is supposed to take to prevent the mouth sores has been a challenge so far.  We offered it to her tonight and she turned it down.  It got to the point where Daddy held her down while I forced it into her mouth.  She spit some out but swallowed most of it.  Then the burp came, and then out came the little bit of dinner she actually ate.  She probably would have been fine if we had just left well enough alone.  If she gets mouth sores and stops eating we will be here on IV nutrition.  If she gets sick after taking the medicine then she is still doing what my dear friend termed "negative eating".  Either way, I don't like it.  She seems to be feeling better now.  I think we just need to back off and if she says no we need to listen to her.  She also refused the chewable tab to help with the gas in her tummy.  We did NOT force that on her.  Daddy was not so happy to have to take home the stinky laundry tonight which included the clothes she was wearing when she got sick and the two pairs of shorts her diapers had leaked on today, but he will live.  Poor guy has a sensitive nose.
I THINK I got some issues straightened out with the hospital billing department.  *Fingers Crossed* as this was my third attempt to give them this same information.  Let's see if it actually makes it into their computers this time.  If not, I now have a particular person's direct line over in billing and I can call her up and press the issue farther.
I felt so badly for Amanda this morning as we were watching Elmo and they showed some kids playing outside on a playground.  She mentioned that they were outside.  I agreed that they were indeed outside.  She asked if she could go outside too.  Hmm. Well. Maybe next week?  Although, they said her immune system will continue to crash through the floor and next weekend will probably be the low point.  Nuts.  Poor kid.
I think the best part of the day was when Aunt Suz was here visiting.  We put Manda's baby doll, Meow and Elmo doll (yes, all three) in her tiny baby stroller and took them for a walk around the halls.  She saw a large group of balloons in the room of the girl next door and started exclaiming loudly, "balloons up high!"  The girl's mom poked her head out of the door.  She was admiring Amanda yesterday saying she wished her little girl was still that little.  She asked how many balloons we had in our room.  I told her none.  She said we should take a balloon for Amanda.  I told her I could never take a balloon from her daughter that way.  She told me not to be silly, that they had more than they knew what to do with.  She went in the room and asked her daughter (mid to upper elementary age) if she would be willing to give a balloon to the little girl who didn't have one. (Geez, doesn't that sound like a sob story?) The next thing I know, the mom is back in the hall handing Amanda a balloon.  Nothing could have made Manda happier at that point.  She let it go and watched it float up to the ceiling then doubled over in a the biggest belly laugh you have ever heard.  We pulled the balloon down, handed it back to her, she let it go and then laughed again.  She repeated this over and over and over laughing so hard the top of her head turned red!  Meanwhile, the family of the girl (mom, dad, two sets of grandparents and maybe some aunts and uncles) kept peaking out in the hallway to watch.  They were tickled pink she was so happy with her balloon.  They said it was too bad we didn't have a video camera since we could send it in to that TV show for funny home videos and win $10,000.  I prodded and prodded Manda to say thank you but she was so wrapped up in her laughing and balloon wrangling that she wasn't paying any attention to what I was saying.  I thanked the family and especially the daughter over and over.  They all seemed pleased as punch.
So, that was our day.  Let's see what tomorrow brings.

Mere :0)

1 comment:

Alexicographer said...

That's such a wonderful story about the balloon -- I do wish you could have taken a video!

Thinking of you and hoping everything goes as smoothly as possible.