Make A Wish

The Make A Wish team had a party to announce Taylor's wish on Tues June 18.  It was held at our local chick-fil-a and it was so fun.  We had some friends join us, everyone got a free meal and it also happened to be the cows bday party at the same time.  So the place was very festive.  MAW made her a Dora beach cake, she loved it so much.  They explained our trip to us and we were blown away at all that was included and the kids were very excited.

Then, the next day was 4th dose of chemo for this round.  Her counts were too low, 300, to get chemo but she did not have fever.  Then Fri we ended up having to go to clinic due to fever that morning and.  It too forever to get her counts because they had to hand count them and there was only one person on staff in the lab for that this day.  The nurse came and said she had to be admitted due to low counts.  We got a room and still didnt really have a full count on the WBC but she was having fever and the quick count was low.  Turns out the count was 330.  She did well in the hospital, and that night my hubby came up with some Sushi and we had a lil date night watching a movie in the room there.  Then he stayed and I went home w the other kids and my sister.  Taylors counts were getting really low, 170, and not going back up, so she had to stay there through Mon morning when she was back to 300 and no fever.  That was a loooong stay and we were so happy to finally get her home.   It is hard to be away from your spouse for a few days, especially during a time when it is stressful having a sick kid.  It was so hard to not be with her the whole time too but we were so lucky to once again have a family member visiting during a hospital admittance to help out.

Over the next week she got better, she had gotten back up to 1070 by Wed, so we were all cleared to go on our MAW trip that Fri!

The whole trip went great!  Taylor did not get sick at all, no fever, no feeling bad, or anything.  It was such a blessing to be able to go and have a week of fun with the kids and not have her get sick.  We of course went to Orlando.  We were picked up in a limo.  We stayed at Give Kids the World.  That place is really neat!  We recommend it for a kid's wish trip!  We did all the Disney parks, the beach, and Lego Land.  We got rained on a whole lot the first 2 days but the rest of the time was pretty good weather.  We got to meet Dora, Jake the pirate, Phineas and Ferb, Princesses, Mickey, Pluto, Marry Poppins... and we saw the marvel superheroes but we just missed doing a meet and greet with them.  The kids really enjoyed the trip.  It was crazy and stressful from time to time, but it was a great experience and memory for all.

MRI update!

Taylor was in the hospital just a couple days over Mother's Day weekend.  She neve had any complications.  Her counts went down to 280 or something, I can't remember; but they sent us home anyway since everything else seemed well.  She was not able to go anywhere or have any one over though over the whole next week until she was back in clinic to have her counts checked again.  She had to miss her best friends bday party and a couple other things, but she was "healthy" and got over the whole low count episode, so it is ok in the long run.

She has not had fever or been to the ER since that trip!!!  That is so exciting!  That is the longest she has gone without a trip there.  She has been doing really well.  Counts have been great, energy good, eating okay, etc.  She has been having the sleeping problems again though.  I am really bummed about that.  It is hard to hear your little girl crying and screaming in the middle of the night for no apparent reason and there is nothing you can do about it.  You want to be able to help or fix it, but really its like we have no idea what to do.  She sleeps in our room half the time just to be closer to her and to keep her from waking up the other girls.  Her feedings seem to be going well.  Her leg pain still has not come back!  Her voice is still going strong!  Her weight has still been going up!

Monday she had her follow up MRI.  It went really well.  We were in the morning so we didn't have to wait much and were in and out pretty fast.  Today in clinic we got to find out the results.  It was great news!  Her tumor has shrunken!!!  That is not expected.  Remember, in this treatment the goal is to keep it from growing and causing more problems.  So in less than 5 months, it has shrunken in width by about 2mm!!!  That is so awesome!  It is nice to see this stupid chemo is working!

Her counts have been slowly going down over the past few weeks of treatment.  Today was dose 3 of this 4wk cycle and she is at 590.  This is almost low enough for hospital admittance.  So please pray with us that no fever or sickness comes over the next week or 2.  We had to wait around an extra 1.5 hrs as they rechecked the counts to make sure she was over 500 so she could get her chemo today.  Finally, they came and got her started.  I am so glad we don't have to altar our schedule again.

Next week Make a Wish is throwing Taylor a wish reveal party!  We are so excited to see her find out about her trip.  We are scheduled to take it in a couple weeks.  So again, pray she stays healthy and everything goes well.  It will be great to have a nice vacation with the kids, we haven't really had a good one in like ever.

My sister comes to stay with us next week to help out.  I am really looking fwd to that.  Summer is in full swing around here and it is nice to have some stress gone for a while.  Schooling adds a lot of stress around here.  This is a very welcome break for me.  Anyway, better go... gotta get a kid from camp.  Update more 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.