Chemo #9, feelin good and lots of gifts!

Well, this past week you would have never guessed Taylor was on chemo (except for the fact she is bald and has a feeding tube).  She has been doing awesome!  She has her voice back, she is playing a lot, she is active (almost back to her full crazy little self), she has been eating okay, and she has not complained much about her tummy hurting at all!!!  It has been so nice!

Yesterday we went back to ENT (ear, nose and throat) and he didn't have to scope her.  he saw her and automatically could tell how well she was doing.  She was playing in his office and talking a lot.  He checked her out a bit and called the Oncologist.  They decided not to scope because he was going to give 50% dose again this week.  They will wait to scope next week before going to 75%.  He also said he will let me see him Wed morning instead of making two trips from now on!  How nice of him.  He isn;t in clinic that day but is in the hospital.  He said he will run up to see Taylor in between his surgeries.  So nice!

Today went well.  Her poke didn't hurt, her weight was up a pound, and her count is 10050!!!  LOL  She went from almost being too low last wk to being extremely high this week.  I asked him about it and he says she is prolly fighting a virus or something.  I said she is fine, no signs of anything.  So all is good so far.  I asked the Doc if we needed to add a week onto her schedule since we missed a dose.  he said we would not add one, we just skipped.  So we are still on the same schedule to be done in the 10 weeks time.  So this was week 9.  She will get one more and then have 2 weeks off.  She painted, played games, and watched tv while getting infused.  I spoke with our friends again today and they are doing well too.  The teenager had her older sister with her this time, so it was nice to meet her.  I am glad we will stay on the same schedule with them.

Some ladies at church stayed after on Sunday and had a headband making party for Taylor and her sisters.  Then one of them came over to deliver them.  A ton of hairbands and 3 tutu dresses were a big surprise to the girls.  They loved it.  Also, today at the hospital an organization was there to give gifts to the kids at the clinic.  It is called NEGU.org and they gave out Jars of Joy.  This was started by a 12 yr old cancer patient while she was going through her treatment.  The Nashville Predators hockey team mascot Nash was with them so all the kids got to meet him and take their pic with him.  I forgot to mention last week that our friends brought Taylor a Caillou doll (we had given their little boy this a few years ago and he wanted to bless Taylor with it since she wanted to have one since Caillou was a bald 4 yr old too).  He loved this doll, slept with it all the time, but he wanted her to have it.  Such a sweet heart of a friend.  What a blessing all these gifts are to our family during this time.  Thank you everyone who has been blessing us and praying for us.

Chemo Week #8

Taylor had a really good week after missing the chemo.  Within a few days her voice was starting to com back some and got a bit better each day.  It is now almost all the way back to normal!  She was also full of energy and back to her normal crazy self.  She was eating almost as well as she use to as well.

She did end up having the UTI and has been on meds for that and it is better, it was from E Coli somehow.  Anyway, she had started complaining of stomach pain really badly in the mornings and so we thought maybe the feedings were bothering her.  So we cut back on the amount we were giving and it got better.  In talking with the Dr yesterday about it though, we realize that may have bene coincidence with the UTI, maybe the pain was from it and as she got meds at the same time as we backed off food, it got better.  So we are to go back to 2 cans of pediasure over a 12 hour night period.

Mon Taylor and her big sister were playing and her feeding tube got ripped out of her nose.  So she had to go without feedings for 2 nights.  We got it put back in yesterday, that is so not fun.  Poor Taylor.  Hopefully it stays in this time and nothing makes it come out.

Tues we were back at ENT to get her vocal chords checked out.  They looked back to normal and the Dr could definitely hear her talking this time.  So we were clear for going back to the Vincristine drug on Wed.

Her redo of Chemo dose 7 went well.  They did a 50% dose of the Vincristine to watch for the next week to see if it will mess with her voice again or not.  If it goes well, then next week it will go up to 75%, then 100%.  If it does mess with her voice, then we will stop Vincristine and try a different regimin.  She is down in weight just a bit and her counts are low this time, at 580.  I thought that was strange.  So anyway, we have to make sure she doesn't get around sick people for now.  She feels fine though and is having fun playing.   Even today, after having chemo she is playing and eating and being herself!  It is awesome!  However, last night she started the fussing again a little bit.  She woke me up crying at one point and when i went in there, she said she threw up.  I looked around but it was only a little spit up.  We went potty and cleaned up her hand and she went back to sleep.  I did leave the bucket next to her bed just in case though.... which I am soooo glad I did because a little while later I heard her get up and throw up.  She threw up a lot, all in the bucket.  So I stopped the feeding.  i don't know if she is nautious from the chemo or if the feedings are bugging her that bad.  So we will just have to wait and see.  I am glad to see she is fine today!  She has been eating well and playing all day!

Chemo Day 7 & Voice Issues

The last couple nights Taylor has been complaining about her tummy a lot but sleeping okay for the most part.  It seems that the tube feedings may be bothering her or something.  I cut the feed off in the early morning today because she was complaining a lot.  At one point last night she apparently stood next to her bed and peed on the floor???  That is a new one.  She has been eating ok over the past couple days; not good, but at least she is eating here and there.  She still gets tired a lot and doesn't want to do anything we ask her.  She won't clean up her toys, put her clothes away, etc.  And the other day some friends came over and they watched tv.  When it was time to stop tv and go play, she protested, hid under her blanket and fell asleep.  She wants to watch tv all day long and, um, I don't care how sick someone is, that is not a good idea.   So we have been having to deal with her disobedience and protesting in things.  It is not easy to discipline a "sick" kid.

Today was Chemo visit #7 and review of 2nd MRI results.  We were in clinic pretty fast and she got accessed and blood drawn, then stats taken, and then straight to a room.  I had mentioned to the nurse about Taylor having pain during urination and bowel movements and she thinks it may be UTI, so we needed to get a urine sample.

 Once in the room, minutes later the Doc came in, that was fast!  He says the tumor looks stable.  They didn't have the full optic scan this time for some reason so he could not see all the angles, but the before and current pics look about the same.  There may be some slight shrinkage in one tiny area but it is hard to tell.  In this kind of tumor, the success is not based off of tumor shrinkage or disappearance, it is based off of no growth or no extra loss of her sight.  So, things are looking good so far with the tumor.

While discussing that, I brought up the issue of her voice.  Since Doc was on vacation last week, I did not get to talk with him about it.  When I mentioned what was going on, he immediately knew what it most likely was and had some concern.  He said the Vincristine (one of the 2 chemo drugs she is on) can cause vocal chord paralysis and that we needed to get it checked.  So, he called the Ear Nose and Throat Doc upstairs and got us in right away to get that checked out.  So, off we were to see him.

We got in right away, and the Doc was really nice and had already reviewed Taylor's file and everything.  He knew exactly what the oncologist was talking about.  We talked and then he did a little check on Taylor.  Then he gave her some spray in her nose to numb it so that they could do a scope of her vocal chords.  It only took a few minutes to do the procedure while I held her in my lap.  Then a few more min for him to review the video.  He said that the vocal chords have movement so they are not fully paralyzed, but they are not fully working as they will not close all the way.  This can be causing her voice inhibition and can cause her coughing when she drinks.  It is not good for your vocal chords to do that because it can cause liquid to go down the wrong tube.

 So, we went back to chemo clinic while the Docs talked on the phone.  Soon after, the Doc comes out and says that we will hold off on doing chemo today so that they can watch and see if the voice gets better off the Vincristine.  It is supposed to come right back if that is in case the problem.  Then, Tues we will go back to the throat guy to see if things look better.  If so, then chemo will be on for Wed but at a lower dose and then the throat Doc will check her monthly to keep an eye on it.  (great just what Taylor needs, another specialist and our family another set of appts to go to).   If the voice doesn't get better by Tues, then oncology Doc says we will have to change meds and get a new regimin set up.  So, we are in a wait and see mode right now I guess.  

We did get her numbers and they were really good, 1750 I think!  Her red blood cells are still a bit low, but not enough to need to do anything about it.

On the way out, we ran into the teenage girl and her mom.  It was good to chat with them for a min.  She is doing really well, no major problems.  She is on lots of different meds for various things, like Taylor is, but I think more so.  She said she feels like a walking pharmacy.  We know how she feels!  She also still has her hair.  Her MRI was last night so hopefully they got good news today at their appt.

Taylor has been low key today, not very active.  Her tummy is still hurting and she hasn't really eaten much.  I just heard back on the urine test and it seems she prolly has a UTI.  So they are sending a scrip for that as we wait on the full culture to come back in a couple days.  Hopefully with her not having chemo this week that we will have a good week!

Genetics, NG Tube, tummy pain, MRI

Taylor has not thrown up since wed, which is awesome.  So I guess that was the end of that bug.  Thursday she woke up after an awesome night's sleep hungry and ate a decent breakfast.  Then, soon after that she was on the couch all day, really tired and no energy.  She took a long morning nap and was a little whiney after and then watched some tv.   She kept complaining about her tummy hurting.  She took another nap and woke up with the terror nightmare stuff.  This one was really bad.  It took forever to snap her out of it.  It is so hard to watch her like that and also to not to be able to help her much.

Friday she woke up, after another pretty good night sleeping, hungry too!  So that is good.  But she only ate a little this time.  During devo/worship time she danced a little bit.  She had a genetics appt today, so it worked out perfect for getting the NG tube put back in.   Taylor felt great today.  The genetics appt went really well.  She was actually scheduled to see the NP today instead of her normal MD, but since all this new stuff is going on, Doc made a trip over from her clinic to see Taylor.  The NP was really nice and the Doc was really sweet, checking on how we all were doing.   We really like her.  There was really nothing much to talk about at this visit thought since we have been going through everything with the tumor and have had many checkups though all that.  When they weighed her she was back down to before she gained the weight with the NG tube help.  They weighed her without her boots/  She was also an inche shorter?  So I am thinking that something is messed up in their calculations from one scale to another.  Who knows how much she has really gained or lost.  When we were done, we went across the hall (convenient that this doc is on same floor as chemo unit) and waited for the nurse to come get us.  It was a bit of a wait (even though I called hours beforehand for them to expect us) but then it didn't take long to ge the tube back in.  Again, she hated it of course.  They put the tube on the other side this time and it seemed to bother her a bit more than the last one.  She kept rubbing it and saying it was hurting.  After the first day she stopped rubbing on it so much.  Now it is just here and there and no complaining.  She ate ok today.

Saturday she woke up after an ok night sleeping.  I am wondering if the tube feeding affects her sleep.  She wasn't hungry and was not that energetic.  She wanted to be with me a lot, so daddy took big bro to baseball practice instead of me.   She started feeling more energetic later in the day and played outside for a little bit.  She complained about her tummy a lot this day.  So, I gave her pain meds and nausea meds to see if either of those would help.  She seemed to feel better later, so I guess at least one of them did the trick; not sure which though lol.  She ate pretty good part of today.  SHe has been scared to go to the bathroom lately.  She says it hurts her teetee.  Right now I think she is dealing with a small constipation type issue to add to the pain factor down there though.

Sunday she woke up and her tummy was still hurting.  She slept ok the night before, no major issues.  The time change messed us up a bit and her tummy was hurting so much that we stayed home from church.  But the kids and I had a good time watching veggie tales and listening to worship music.  Then Taylor stayed sitting with me while I watched our church on tv.  I gave her some more meds for her pain.  She still doesn't like going potty.  I have to keep making her go, but she cries.  It is like she isn't potty trained anymore, I am so not wanting to divert to those days, ugh!  She finally had some good potty time and she was feeling a little better, not complaining about tummy anymore.  She played well today and she ate really good (for Taylor anyway)!  She is into sliced cheese and cherries lately.

Today, Monday, is her 6wk follow up MRI.  She slept well last night and woke up hungry this morning, although she is not allowed to et today until after the MRI is over :(  Of course the one day she can't eat, she wants to.  She wants to so bad that she is throwing a fit and crying about it.  Poor thing, it really sucks... chemo sucks!   Anyway, this morning was crazy.  I had to get brother off to school then turn around and come home and get the girls ready because my oldest daughter had an OT appt.  All of this in the pouring rain.  I didn't even have time to eat breakfast or feed the baby.  So, dropped big sis at OT then took the lil girls with me to Starbucks.  We ran in and then I realized I forgot the baby bag.  So we had to run back out into the rain to get it and go back in.  Doing that with a whiney "sick" 4 yr old and an infant carseat and a bad back is no fun.  Taylor got some appljuice but then refused to drink it because she was hungry and she wasn't allowed to eat.  So she protested and cried almost the whole time we sat there.  I bribed her to behave by promising her whatever she wanted to eat and a gift later that day if she could be a big girl and make it through the day.  After OT, I had to drop big sis off at a friends house for the day; this was a big help.  Then I had a couple of hours at home to get finally get myself ready for the day and relax a bit.

We got to Vandy about 15 min early.  I grabbed a subway to eat when I had a chance and then went to check in.  They called us back exactly when they said we should be there!  Then, they got everything done really fast and had her taken back right on time!  So the baby and I went to sit down and eat lunch and that is when I started to update this blog, lol.  On hour later, they called to say she was already starting to wake up and to come on back to the room.  So I packed everything up and headed down there.  She was sleeping when I got there.  We were able to rouse her about 15 min later.  She woke up and said I want some coffee, LOL!  She is too funny!  She knew it was now time to eat and drink.  So, they gave her some sprite and I gave her some cheetos, then within 30 min of coming out of the MRI, we were out of there!  We headed back up to the cafeteria and she got some hot cocoa and a cookie.

She is doing well, still a bit clingy to me all day, but that is expected after an MRI.  She ate pretty good at dinner time and now she is chilling before bed.  I am guessing we won't hear the results until we go in on Wed.  Will update when I can!

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.