TGIF!! I hope you all had a great Friday. Taylor had a great day today. She felt really well and got to "run free". I asked her doctor is she could be unhooked from her IV pole for a few hours since she is not on chemo anymore and they agreed. She had so much fun...running, jumping, dancing, twirling!! She absolutely wore herself out....she is snoring right now!!!

She spent the day with Daddy because I worked today. She had a busy day with visits from her teachers, Miss Marcy, Miss Gina, and Miss Laurie!! She enjoyed seeing all of them and they helped brighten her day...thank you all for visiting.

Her blood counts have actually gone up a little bit today. She continues to be able to go out to the playroom. I was concerned that her counts went up and have stayed high since we got in. The doctors assure me this is OK, the chemo is still working, and they will drop very soon. So...we are enjoying playroom time and glad she had such a great day!!

I was reading older posts to Taylor tonight and she reminded me that I have never written anything about "Sophia". Sophia is one of Taylor's night nurse and Taylor adores her. Sophia works Thursday, Friday, and Saturday nights and always takes care of Taylor. She is one of the sweetest, most caring individuals that I have ever met. She hugs and kisses Taylor and is adorable. Tonight Taylor tried hard to stay awake because she wanted to tell Sophia "that she loves her!!". I really would like to thank Sophia for taking such great care of Taylor and I. Sophia had Taylor the first weekend we were here (back in June) and helped me through some really long night also. I am going to take a picture of Sophia and Taylor and post it for everyone....she is the best and we do love her!!!

I also want to post a special thank you to all at Moda Fina. Today was the final day of the Loving Taylor charms and Sean and I are so touched by their generosity. You have all been so great to us and your fundraising efforts mean so much....thank you all of all that you have done!!!

I also want to thank Miss Marcy for taking the girls for the summer. Miss Marcy was Taylor and Savannah's teacher last school year and the girls fell in love with Marcy. Marcy watched them all summer and continued to watch Savannah for us once Taylor got sick. Marcy has been amazing and means so much to all of us. She has been a "rock" to Sean and I during this hard time and has helped Savannah feel extra special while Mommy is always gone. Marcy goes back to work on Monday so THANK YOU!!! You are a dear friend and your compassion and love toward the girls means so much to me.

Papa (my dad) and Grandma Renee get here tomorrow to see the girls. Taylor is SOOOO excited and can't wait to see them. They are here for 2 weeks.....yeah!!!

Have a great weekend. I am going home tomorrow through Sunday afternoon, so will post again when I get back!!

Love,
Kristen

8 days of chemo are finally finished!!! Taylor (and I) both got a good night's sleep last night and she had a good day. She was feeling really well. She played alot with Grandma and had a special visitor in the play room. A gentleman named Larry volunteers his time here and does face/arm painting and magic tricks for the kids. Taylor got Strawberry Shortcake on her arm and Savannah got Hello Kitty. They both really enjoyed Larry and Taylor can't wait until next Thursday when he will be here again. She told me tonight that she is going to have "Mommy" painted on her arm next week...that should be interesting!!!So...now we wait!!! Her counts actually came back up today, which means our stay will probably be a little bit longer this rounds....probably more like 5 weeks instead of 4!!!

We did get the results of the "cytogenetics" today. Her chromosomal mutation was "mildly affected" in a positive way. What this means is that she did not flip to high risk, but didn't flip to low risk either. The doctors are very pleased that their was a positive impact but not to the extent they were hoping for. At this point, I still look at it as good news....positive is better than negative or no effect at all!! So tonight as I post, her treatment will stay the same until we have the results of round 2 (which will most likely be early September).

We are still hanging in there and she is feeling better than I expected.

Hope you all had a great Thursday.

Love,
Kristen

Day 8 and the final day of chemotherapy this round. Taylor received a dose at 6:00 tonight and 6:00 tomorrow morning and then this round will be complete. They usually expect her counts to be at zero about 7 - 10 days after chemo, she will hover at zero for about a week, and then slowly come back home and we will off to break #2. The only thing that would require us to be here longer would be if she got an infection (which is likely!). Her nausea seems to be under control.

We have a REALLY BAD night. She received a RBC transfusion around 10:00 last night. Each transfusion is pre-medicated with Tylenol and benadryl to help prevent a reaction. About two hours into the transfusion, she woke up screaming. She was inconsolable and hysterical. She wasn't reacting the the blood, they think she was possibly having a strange delayed reaction to the benadryl. It took her nurse and I about an hour of "restraining" her until she fell asleep again. We had to restrain her because she was throwing herself around in the bed so badly, we were afraid she was going to crack her head on the bed rails. So.....last night was not great!!! She scared me to death....it was horrible watching her. I spoke with the physician and she will still get benadryl when needed but they will decrease her dose. So....she and I were both really tired today.

Aunt Kerri stayed with her today while I worked and they had a great day. Aunt Kerri got her nails painted, got eyedrops, and did crafts. Taylor's favorite thing to do right now is put eye drops (normal saline) into everyone's eye. She is still getting eye drops so she thinks we ALL need to get eyedrops!! It is quite an experience!!

That is all for today....still no word on the cytogenetics (the extensive testing of her bone marrow!!).

Love,
Kristen

Day 7 of chemo was not too bad!! She got a decent nights sleep last night thanks to the Benadryl. She played in the play room with Jessica and had a great visit from Michael and Chris. She felt well all day. Her appetite still isn't great but she at least snacked throughout the day. Her blood counts dropped significantly from the day before. She will most likely be confined to her room for the duration of this round in the next day or 2. Thanks to all of you, we have tons of new crafts to do once we can't leave the room. Her RBC have gotten really low so we are waiting for a transfusion right now. She was a very brave girl and took her Tylenol tonight without any problem. She is being GREAT with her medicine..no more spitting!!!

We found out today that we will be changing rooms over the next day or so. We are sad to have to leave the room we are in but our roommate situation continues to be difficult, so I think it is for the best. We are hoping to get moved in with some one closer to her age!!

Still waiting to hear back on the final results of her bone marrow test....keep praying.

All in all, we had a good day. She is such a good girl and her spirits amaze me....she gives me strength every minute of every day...I love her so much!!

Off to get some work done and try to get to bed early tonight....very tired!

Love,
K & T

REVISED DINNER SCHEDULE

"How It Works"
If you would like to prepare a delicious "home-cooked" dinner for them, please place your name next to the date that you would like to participate and email back to me (I have created a three-month calendar below). I will maintain the master calendar so there is no confusion. Please feel free to make any type of dinner. The only item that is not on their "favorites" list is baklava. Easy enough!

Please plan to drop-off your dinner at Congregation Beth Israel's Chanen Preschool (address listed below) anytime before 3:00PM. Sean will pick-up between 3:00PM - 3:30PM. As they may have left-overs, our dinner schedule will be Mondays and Fridays.

Congregation Beth Israel - Chanen Preschool
Address
10460 North 56th Street (southwest corner of 56th Street & Shea)
Scottsdale, Arizona 85254

Calendar
August
14th (Friday)
17th (Monday)
21st (Friday)
24th (Monday)-taken
28th (Friday)
31st (Monday)

September
4th (Friday) - taken
7th (Monday) - Labor Day; School closed (we will change dinner drop-off location) - taken
11th (Friday)
14th (Monday)
18th (Friday) - Rosh Hashanah (noon dismissal)
21st (Monday)
25th (Friday)
28th (Monday) - Yom Kippur; School closed (we will change dinner drop-off location) - taken

October
2nd (Friday)
5th (Monday)
9th (Friday)
12th (Monday) - Fall Break; School closed (we will change dinner drop-off location)
16th (Friday)
19th (Monday)
23rd (Friday)
26th (Monday)
30th (Friday)


Thank you in advance! Your kindness and generosity means the world to the Souza family!!! We love you Taylor!!!

Please let me know if you have any questions!

Best,
Rhonda Rush
(480)363-4339 (cell)

Dinners for the Souzas

Hi, it's Sheri hacking into Kristen and Sean's blog without their permission. I so love doing that! A very sweet mom from preschool sent out an e-mail to the other preschool moms about signing up to bring the Souza's home cooked meals a few days a week. If you are local and are interested, here is the e-mail Rhonda sent out. If you are interested in participating, her e-mail address is rhonda.rush@impact-events.com:

Dear Friends:

We are all trying to support the Souza family in different ways during through this tremendously difficult time in their lives. It is very important to Kristen and Sean to still maintain a sense of "normalcy" at home, so I have decided to take on the role of coordinating "at home" dinners for them.

"How It Works"
If you would like to prepare a delicious "home-cooked" dinner for them, please place your name next to the date that you would like to participate and email back to me (I have created a three-month calendar below). I will maintain the master calendar so there is no confusion. Please feel free to make any type of dinner. The only item that is not on their "favorites" list is baklava. Easy enough!

Please plan to drop-off your dinner at Congregation Beth Israel's Chanen Preschool (address listed below) anytime before 3:00PM. Sean will pick-up between 3:00PM - 3:30PM. As they may have left-overs, our dinner schedule will be Mondays/Wednesdays/Fridays.

Congregation Beth Israel - Chanen Preschool
Address
10460 North 56th Street (southwest corner of 56th Street & Shea)
Scottsdale, Arizona 85254

Calendar
August
12th (Wednesday)
14th (Friday)
17th (Monday)
19th (Wednesday)
21st (Friday)
24th (Monday)
26th (Wednesday)
28th (Friday)
31st (Monday)

September
2nd (Wednesday)
4th (Friday)
7th (Monday) - Labor Day; School Closed (we will change dinner drop-off location)
9th (Wednesday)
11th (Friday)
14th (Monday)
16th (Wednesday)
18th (Friday) - Rosh Hashanah (noon dismissal)
21st (Monday)
23rd (Wednesday)
25th (Friday)
28th (Monday) - Yom Kippur; School closed (we will change dinner drop-off location)
30th (Wednesday)

October
2nd (Friday)
5th (Monday)
7th (Wednesday)
9th (Friday)
12th (Monday) - Fall Break (we will change dinner drop-off location)
14th (Wednesday) - Fall Break (we will change dinner drop-off location)
16th (Friday) - Fall Break (we will change dinner drop-off location)
19th (Monday)
21st (Wednesday)
23rd (Friday)
26th (Monday)
28th (Wednesday)
30th (Friday)


Thank you in advance! Your kindness and generosity means the world to the Souza family!!! We love you Taylor!!!

Please let me know if you have any questions!

Best,
Rhonda Rush
(480)363-4339 (cell)

Happy Monday to all!! After I posted the blog last night and tried to get Taylor to sleep, our night turned really bad. She started throwing up and threw up over and over again. She was still getting her Zofran (anti-nausea) medication, plus they gave her 2 other medications for nausea. She just couldn't stop throwing up. Finally around 1:00am, she started feeling better. She didn't finally fall asleep until 3:30am. Our roommate right now is a 14 year old girl and the age difference between Taylor and Kendra is proving to be very difficult. Kendra stays up most of the night watching TV and then wants to sleep all day. Hence the reason Taylor didn't fall asleep until 3:30.

She woke up feeling better but very cranky. She played in the playroom and then we had the dreaded weekly dressing change. As you can imagine, the dressing changes don't get any easier....they are horrible and she screams like you can't imagine. Luckily the nurses do it while we are in the hospital....mommy still has to help hold her down!! We made it through and she slept for a couple of hours.

Her counts continue to be OK. Her RBC's are dropping and she will most likely need a transfusion tomorrow. Her chemo rash is just starting again and seems to be a little bit more itchy this time.

All in all, not our best night/day. She is asleep now with the help of Benadryl. Sher needs a good nights sleep (so do I!!).

Hopefully you all saw the picture of Savannah that Sheri posted for me (thank you Sheri). Savannah got to spend a special night with Grandma and go see the Wiggles. I have been so worried about Savannah and the lack of attention that she is getting so thought this would be a special day for her. Grandma said that she had a great time and was dancing in the aisle all through the concert. Thank you Grandma for taking her...you are the best!!!

Since Taylor is finally sleeping, I must get to my other job....work!!! Hope you all have a great night.

Love,
Kristen