March for Babies

Friday, September 26, 2008

Up High!

To Amanda, anything that is over her head is "up high" which is always said with multiple exclamation points implied. (!!!!!) This is not that hard as she is only 33-inches tall. The Adriamycin was supposed to push her counts down to their lowest this weekend. She has been getting shots every night since we have been home to help fight that dip. Her ANC (ability to fight infection) today was over 15,800! If I didn't know better, I would say she is part super-hero!
We have instructions to cut the shots to every-other day and we will check again next Thursday.
Thursday will also be our meeting with the surgeon to discuss the tumor resection (cutting that sucker out of there). So, we will do what we can to enjoy our weekend and get as much laundry done as possible since Manda and I are still living out of the suitcase we took to the hospital last week.
Happy Birthday to Great Uncle Rick and our thoughts are with Great Uncle Bud this weekend. Much love to you both!

Mere :O)
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Monday, September 22, 2008

Out of the Mouths of Babes

"Yay home. No Pokes!"
At least for tonight.

Mere :O)
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Sunday, September 21, 2008

Long Weekend!

Well, if things continue as they are now they will stop the IV drip at 5am and we could go home whenever they decide she is not having any reactions. So far, so good.
We did not have any further episodes of Manda getting sick. This did mean that we skipped her medicine all together last night and she only got half of her dose tonight. I hear about it from the nurses but they cannot tell me she is better off throwing up the meds 10-seconds after it goes down. I personally think that is worse than not getting it at all. I should point out that the medicine in question is meant to help prevent thrush (like babies get in their mouths) so skipping a few doses here and there isn't that critical. Also, she takes it at home all the time without a second thought. She actually likes to hold the oral dose syringe and push the plunger herself. So, if the hospital is a big scary environment where we skip it for a couple of days it is not the end of the world. (Do I sound defensive yet?)
I am hoping that when we get home tomorrow, being in her own bed will help her sleep. She has always been a good sleeper. However, this particular hospital stay she is fighting sleep both at night and naps in the afternoon. Ugh! She is SO tired and she is crabby and demanding and she NEEDS to sleep! Saturday night she didn't settle down to sleep until midnight! Now here we are, 23 hours later and she is wide awake and playing with her Elmo doll instead of sawing logs. I find myself napping in the afternoons when she does just so I will have the energy to stay awake as long as she does at night. This should, make that WILL change at home.
Back to "normal" tomorrow! Wish us luck.
Mere :O)
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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)

Thursday, September 18, 2008


Yeah, that would be nice. After packing for a three day stay in the hospital expecting nothing different from last time I now fnd out that the new medicine is a 96 hour IV. Oh, and it cannot be started until 8 hours after the Cisplatin is started. We are SO not getting out of here on Saturday.

Mere :O)
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Um, Okay

Well, the phone rang but it was not the call I was really expecting. Manda and I will be checking into the hospital today for another three days of inpatient chemo. This will include a new drug she has not had before. Apparently it will take three weeks for her blood counts to recover from this dose of chemo. We will meet with the surgeon on October 2nd to discuss the operation and recovery. Surgery to remove the tumor on her liver is scheduled for October 9th. This gives Manda time to recover from the chemo and also allows the surgeon to go on his 2-1/2 week vacation. (They have assured me that the vacation has nothing to do with this new dose of chemo.) We won't be doing a complete four week cycle of chemo at this point, just this one dose and then time for her to rest before surgery.
So, wish us luck! I think it is going to be a long three days.

Mere :O)
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Tuesday, September 16, 2008

Waiting for the Phone to Ring

Well we are waiting for the phone to ring. We are waiting to hear back on
what her blood work shows as her new AFP. This will tell us how she is
responding to the chemo. We are waiting to hear back on what this morning's
CT scan showed. This will tell us if we are ready for surgery. The BAER
test showed she has not lost any hearing in either ear but her left ear was
quite full of wax. We will have to look into that. Don't want it to become
a problem with her hearing in the future.


Mere :0)

Friday, September 12, 2008

Take What You Can Get

I just said, "Hello pretty girl! Love you"!
She said, "Thanks" and walked away.

Mere :O)
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Monday, September 8, 2008


My kid just said the word "watermelon" plain as day!

Mere :O)
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Friday, September 5, 2008


I knew this would be a long hard week and I was proven right once again. With afternoon appointments for chemo every day Amanda was not able to get her naps in like usual. This coupled with a kid who feels sick from the chemo and has low numbers leads to lots of time outs and crying. She had the time outs, we both cried, but not at the same time.
Next week we are free! No appointments! The next week we have a CT scan on Tuesday and will await surgery. We should not have to wait long. The ball will rest this next week and then begin to roll...quickly.

Mere :O)
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Monday, September 1, 2008


I mentioned the fever first hing to the nurse this morning and she had one of the doctors already attending the inpatient oncology patients take a quick peak at Manda before we got the ball rolling. He checked her over from top to bottom and declared her fit for chemo. We had the first of five infusions. She'll go back every day this week for more. This one can make her sick to her stomach so we are also dosing her with Zofran to keep the gagging away. It worked last time, fingers crossed for another good week. We should be finding out this week when she'll have her CT scan and then we are off to the races scheduling surgery to get that sucker out of there. I have a feeling time is about to speed up, like I am going to blink and it will be Christmas.
We are back to good news. Getting ready for our Labor Day cook out.

Mere :O)
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