Chemo #5 & #6, Make a Wish

Chemo Day 5 went well.  It was a quicker visit since she only needed one of the Chemo meds.  She gained a pound since they put the tube in that last week.  So that is awesome!  Her # is also up to like 1150.  She has not gotten sick at all this past week either.  Her hair did finish mostly falling out, so we had to trim up some straggles.  She has a bit of hair left, sort of like a baby has.  With the hair missing and the tube in her nose and her being so tiny and skinny, she looks like a really sick kid.  But she is pretty healthy and doing well.

During the week after visit 5, we started noticing Taylors voice changing.  She now talks extremely soft.  It is so cute to hear her but it is really weird and we are not sure if this is something that is wrong with her or just a little side effect that has no negative meaning to it.  It affects everything; her talking, laughing, crying, etc.  When she has her freak out moments in the middle of the night, it makes them sound worse than they are.  It is like she can't breathe or something.  There is not much sound and a lot of breath type sound and she is all disoriented and crying and moaning.   It is not fun to see her like that.  It is hard to know what to do.  It is not easy to snap her out of that state.  She has been doing this waking up stuff again a lot lately.  I really hope this doesn't continue the whole year of chemo!

Last weekend, the Make a Wish people came to our house for a visit.  They were really nice.  We talked about the Make a Wish program and what wish Taylor wants to make.  It was hard to really get her to understand what they were there for and how to make a wish.  They had some good ways of getting info from her like what she likes and such to help us all get an idea of what would be a good wish for her to make.  We ended up choosing to go to Nickelodeon Resort where she can meet Dora, play at a water park, go to the beach, and anything else in the Orlando area that we can squeeze in during a trip down there (like maybe lego land and disney).  So we will get to find out if that wish can happen or not in the near future.

This past week a lot of our family has caught the stomach bug that is going around.  First my baby, then my hubby, then my oldest daughter (though no vomit for her), and now Taylor and my oldest son.  I am tired of people throwing up!  Taylor threw up yesterday morning all over the kitchen.  She hasn't been eating much at all the past couple days!  But the feeding from the tube the night before went everywhere.  Last night Taylor got fever that spiked at 100.6 for maybe half an hour an then went down to 99.6.    She freaked out a lot last night and really complained about her tummy and then threw up again.  I called the Doc and this time this one said that it was ok to watch the fever like that and that if it goes down below 100.4 in an hours time then we don't need to go to the ER.  That is nice info to know, wish they would have mentioned that a long time ago!  It could have saved us two trips!  I am glad we decided to watch it on our own!  I was awoken this morning an hour early to my son throwing up in the bathroom.  Then, Taylor threw up again and this time it ejected her feeding tube out of her mouth so we had to remove it.  Fun times!

Today was Chemo day 6.  It went well.  We were taken right back and put in a special room since Taylor has a stomach bug.  She got to watch a Dora movie which made her happy.   Her number is 610 which isn't great but still good enough.  They say her weight went up 6 oz which I was surprised by due to the week we had.  But then I realized later that last week they weighed her without her shoes and today she was wearing boots and they didn't make her take them off... so that could be causing the gain.  Who knows.  They are waiting to put her tube back in until they know she is done being sick.  So we might be going back up there Fri to do that.  It was another short visit as only the push med was needed today.