Well, I am back from Dallas and Taylor has gotten through her dose of chemotherapy. I got back last night around 9:00pm and she started chemo at 12:00am. She is feeling good this morning and even asked for breakfast. Last week, the chemo didn't seem to affect her until after her second dose which will be today at noon. So....now we wait. Her counts are starting to come down. Her platelets are also dropping so will most likely need a platelet transfusion by the end of the week. She will receive chemo today at noon, tonight at midnight, tomorrow at noon, and then her next injection at 6:00pm on Wednesday. Her next injection has high potential for reaction so that is scary.....please pray for no reaction!! She is back on her eyedrops which she hates. She will have these every 4 hours until Friday at noon. During the day she is pretty good about doing them but the midnight and 4:00am dose is difficult!!!

I wanted to thank my dad for all his help this week. He took care of Savannah for us while I was gone....she had a great time with Papa!!!

I will try to update tonight.....

Quick post as I am frantically trying to get laundry done, pack my clothes for the next week at the hospital and get ready for a 7:00am flight to Dallas tomorrow. I came home around noon today to spend the afternoon with Savannah. I have to fly in to Dallas tomorrow for a work meeting. I will be home around 8:30 tomorrow night and go right back to the hospital. Taylor will start chemo again Monday at midnight.....luckily, I will make it back in time!!! Sean will be spending the day at the hospital tomorrow and my dad is at the house to help get Savannah to and from school tomorrow. Papa will also go down to help with Taylor on Monday.

Taylor is doing well. She seems to be feeling better today....the break from chemo has helped. She is getting her appetite back a little bit and wanting to play more. Her rash is much better. We did have to change her dressing today and her skin is really breaking down from all of the dressing changes. Her skin is bright red and looks miserable. My friend Keryn was there today when they changed her dressing and I watched Keryn cry right along with Taylor. It is so terrible to see how much it hurts Taylor.....she is so brave!!!

I will post more when I get back from Dallas.
XOXO
Kristen

Well....we have had quite a 24 hours. It started off yesterday with Taylor needing a dressing change....never fun. Then we found out that it would be necessary to have Taylor get another nasal swab for influenza. She had already received one negative results but it is necessary to have 2 negative swabs before Taylor can be cleared to go back to the oncology floor. The nasal swab is very painful. A very long q-tip is stuck into each nostril and pushed up very far. It is then swabbed for about 30 seconds. It is pure torture for Taylor and she has already had 4 done....so it was not fun. We got through both of those and tried to have a better afternoon.

Taylor had to have a blood transfusion last night. It started out well but about 35 minutes into it she became really restless so I went to check on her. Both of her legs and ears were very red and rashy. The transfusion was immediately turned off because she was reacting to the blood. She was given another dose of Benadryl and then the transfusion was re-started. Luckily, she did not have any reaction after that.

We woke up today to find out that her nasal swab was deemed "insufficient quantity" and needed to be re-done today. At this point, I talked with the doctors and nurses and we have decided not to do the swab again. I just can't put her through this....it is too much. So....we will stay on the 3rd floor in an isolation room for the remainder of this round. She is disappointed that she won't be able to see all of her "friends" downstairs but happy she doesn't have to be swabbed again. We had to move rooms today and we are now back in the room that we were in for all of round 4. This is a private room but they are having problems with the heat and the room is a SAUNA....it is so hot. They are trying to work on cooling it down....we are both very HOT!!!!

After all of this, we tried to enjoy the rest of our day. We enjoyed a visit from Michael and had a pizza party with Aunt Kerri and Uncle Shawn. Taylor was very irritable and feisty today.....I don't think she felt that well.

For the good news.....one of my best friends came by and has given Sean and I a new laptop!!! This will enable Sean, Savannah, Taylor and I to Skype.....we will be able to see each other via computer every night. Kim - thank you so much!!! I also wanted to thank Betty and Kimmie for trying to get this going for us. Betty tired to do this for us when Taylor was first diagnosed but our computers would not allow Skype to be downloaded.....thank you for trying!!!

I am also attaching a link to a video that Taylor and I participated in. Phoenix Children has a big Christmas fund raising dinner and they asked if I would share Taylor's story on their video. It turned our really well. Cheriese reported that there wasn't a dry eye in the audience after hearing about Taylor's story.....we hope our message helped get much needed donations and support for PCH!!!

http://www.youtube.com/watch?v=WvGtwBhQ-eo

I have also attached a picture of Taylor and one of her (favorite) RN's from the 3rd floor......she loves Amanda!!

Long day....going to take a COLD shower and try to get some sleep....this room is so HOT!!!

Will try to post about Taylor after get her to bed but wanted to quickly post a picture of Sean and Savannah on their "date" to The Nutcracker. We were lucky enough to get tickets through HopeKids for the performance. Savannah is so excited.....she wanted to go out for steak before the ballet!!!! I am so happy that she gets to do something just for her!!!

Today was another challenging day. Taylor really didn't feel well for most of the day. She didn't throw up but wouldn't eat much and just wanted to watch TV and lay down for most of the day. She was up a little bit to play Candyland but wanted to lay right back down. She just doesn't have any energy. Her rash has gotten worse. They actually don't think it is related to her chemotherapy....they are not sure what is causing it. They are going to give her a dose of Benadryl tonight to see if that helps at all.

Tonight at 6:00 she received her chemotherapy injection in her leg. It actually went better than I thought it would but was still pretty rough. She was extremely brave and strong. It has been 2 hours since the injection and she hasn't had a reaction so hopefully we are out of the woods.....

Taylor actually get a break in her chemo treatments until Tuesday at 12:00 am. Then she has the same protocol that she just went through again. She will get another injection next Wednesday at 6:00pm. Then we wait......

The picture above is of Taylor in a new hat from our friend Katie. Katie is the mom to one of our past roommates, Jake. Jake was downstairs for a MRI and Katie stopped up to visit. Taylor loves the hat.....thank you Katie!!!

I am off to get some rest....last night was a long night with not much sleep......