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.

Weekend #4

Thursday went pretty well.  Taylor seemed good most of the day but still tired.  That evening she started getting a bit of a fever again so I cancelled my bile study.  I also was in dire need of grocery shopping so I got Taylor set up on the feed (on the couch again) and went out after kids were in bed to get the shopping done... I have never spent that much at the grocery store before, wow!  It was a much needed trip.  We hadn't really been on a full trip in like a couple weeks.  When I got home and put everything up, I checked Taylor and she had gotten up to 100.3 again.  The hubs and I watched some tv and before we went to bed I checked her again.  She was back down!  SO happy!  She slept great again!  I am not sure if its the nutrition, the couch, or what but I like it.

Friday went awesome!  Taylor was feeling good; was seeing my little girl again.  It was nice to see her personality.  She got to play outside today and was so happy about that.  She had a lot of fun out there with all of us.  Big sister learned how to ride her bike without training wheels today!!  Such an accomplishment!  We are excited for her.  Big brother is practicing baseball for his skills evaluation on Saturday.  Little brother is trying to get better at riding his bike too and being safe in the street.  It was nice to get out on a nice day with all the kids while the baby napped.  It has been a while since we did that.  I am SO ready for spring to be here!

Saturday went well too!  Taylor had another great night on the couch and the feedings are going well. Although the baby had a bad night of fussing, blah!  Taylor is eating a little bit better during the day but I still have to tell her to eat and make her eat.  I am hoping this gets better!  She got to go on a hang out with Daddy at the park and she just loved that.  The other parents were all sweet to Taylor when they saw her and told their kids to let the little girl play.   LOL.  Last night she slept in her bed and I had to get up like 3 times with her fussing again.  I don't get it!  Maybe it's her bed that is the problem?  Or this is just coincidence?  I wish I knew.  These past few days you could really see her hair falling out.  Pieces of it are all over her clothes and pillow and when you touch her hair they come out.  So, I had to start brushing it more so that it would not make such a mess.  It is so sad to watch her hair slowly disappear.   This morning, I had her wear a hat to church because her hair is really to the point where it is extremely thinned out and uneven and makes her look like a sick kid (that together with the tube in her nose).  It is almost to the point where we just need to cut it off.  We are ready with lots of hats and do-rags though :)

Whirlwind

Well, Wednesday after being home for a couple hours, I got a call from someone at Vandy saying that we left without getting any training on the feeding tube and that we really needed to have that so we can make sure it is always in properly before we try to feed her through it.  They said it wouldn't take long and they were sorry for the miscommunication but we needed to come back up there.  So, the kids and I got ready and off we went.  

We got there pretty quickly and were taken back within a few minutes.  Then the nurse showed me what we needed to learn and we were out of there in about 15 minutes.  It was time for snack so we stopped for a quick bite that we brought with us and then we were on our way home.  We were lucky to get out of there before traffic started up!  We only hit one patch of it on the way home.

Taylor did good the rest of the day, but she still didn't really eat.  At dinner time, the house was a little chaotic and the Lady with the feeding pump showed up to drop everything off and teach us how to use everything.  At the same time, the baby started getting fussy.   Thank God someone brought us a meal this night, or that really would have been a mad house trying to cook.  The lady was really slow and didn't really know the equipment at all.  I was figuring it out before she was and that combined with a crazy day, a whiney hungry tired baby, and dinner being put on the table with chatty kids, made for a stress bomb in dear old mom.  It was really chaotic.  I was starving but had to be with this lady to learn this stuff; but I tried to eat while the lady was doing stuff and talking to me and I went back and forth between food and baby and looking at machine.... it was insane.  The other kids were vying for me at times too.  Finally the lady left, I got to finish eating, and got the baby fed and in bed... I have never been so stressed in my life.  I am not sure exactly why I got like I did, maybe the day after day after day and lack of sleep and load after load of LIFE... but I was so ready to pop;  I kept trying to breathe and it just wasn't enough to bring me down.  Every little thing was amplified.   I had to just get away from people for a bit.  On edge was an understatement...  I asked friends for prayer and soon after I calmed a bit and got Taylor set up on her first feed.  She slept on the couch.  Once all the kids were down, I was finally mostly diffused and was able to relax a bit that night.  Taylor slept great and the first feeding went great as well.

Chemo Day 4

Last night she was in and out of sleep a couple times.  One was a doozy and I had to get her to wake out of her fit and calm her down.  We had to get up early this morning to be at a 7:30 appt for the chemo, blah.  She was a bit whiney, but who isn't that early in the morning?  We got there a little early and grabbed some breakfast in the cafeteria.  When we went into the clinic, one of the nurses gave her a doll that was bald.  It is a gift from some group that makes them and leaves them for kids to have.   Then they got her tubie in and took her blood and she did awesome!  I think that was the best time yet!  Then we set up the candy land game to start playing.  However, we were then called away to get her stats and go to a room to see the doc.

Her number came back 540!!!  Boo!!!  So, we got a clearer explanation about the numbers.  A neutrphil count of 1500 or lower is considered neutropenic.  1000 or lower is like medium neutropenic and 500 or lower is DANGER neutropenic.  At that point is where they worry and admit you to the hospital.  So, Taylor is almost to that point right now.    SO, if she gets fever again, most likely we will have to be admitted to the hospital.  Pray that she does well this week and doesn't get sick.   Also, since her weight is doing so poorly, they are afraid of her being malnourished.  So, we talked to the doc and a nutritionist and they suggested a feeding tube.  While we were talking, Taylor was curled up in my lap almost falling asleep.  I guess those meds do make you tired.   I stroked her hair as she lay there and I realized that some of her hair was coming out.  So, I guess that process has started :(

Anyway, we went back out to the treatment area and someone else had taken her seat with the candy land game set up.  So she started crying and I had to calm her down.  We picked another chair and then the child life specialist came to see what was wrong and she said she had another candy land.  She left and quickly returned with the game!  She is a hero!  We played that and some other games while she got her chemo.  Then it was time to get the ng feeding tube.  The hero came back with us and brought a doll that had a tube in her nose so she could see it.  She explained to Taylor what it was and why she needed it and what would happen.   You could tell she understood; at the end she started getting sad and scared.  It was so cute and sad at the same time.  Then came the nurse.  The She did NOT like getting the tube in at all.  It took 4 of us to get the job done and she screamed bloody murder.  Poor thing!  i hate that she has to go through all this stuff.   On our way out the door (10:30), we ran into the teenager.  She had a bad week as well; although she didn't have to go to the hospital for anything.   Her hair is also starting the fall out process.  It was good to chat a bit and then we were glad to be on our way.  It was hard to get there early, but it was nice to get in and out so fast and get to pick whatever seat we wanted.

Taylor fell asleep on the way home.  She looked so tired and "sick" like.  We picked up her siblings from our friends house (which was so awesome the she watched them and they got to have a play date!!!) and then we went home to eat lunch.   She was not hungry, so she didn't eat till like 1pm.  She is still a little whiney and looks really tired but she is playing video games.  The nutrition people are supposed to come by dropping off the machine and "food" for her tube feedings.  She will be getting feedings during the night while she sleeps.  This should be interesting to learn to deal with.  Anyway, Here is to hoping for a good week!