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

Savannah

Savannah made a "dog bone" today for Wags the Dog. She is going to see the Wiggles with Grandma today!

Please go to www.lovingtaylor.com for more information about helping to support the Souzas in this long journey and an upcoming golf tournament!

Thanks,

Sheri

Day 5 of chemo and the effects of the chemo are really starting to hit Taylor. Her appetite is gone, we are back to 1 or 2 bites/meal. I think she is also beginning to get a couple of sores in her mouth. They are just starting to pop through. One of the problems is that she refuses to rinse her mouth with "Biotene." This is to help not get mouth sores but she HATES the peppermint taste. I did it tonight to show her and I will continue to work with her on it....

After being home for 24 hours, I can tell her hair is starting to fall out again. I also noticed that her eye lashes seem a lot thinner to me. This is all to be expected.

She is still able to go to the playroom every day so that helps. Savannah came down with me tonight and the girls painted for awhile. Taylor had a couple of really bad meltdowns because Savannah was getting too much attention from Mommy. It is so hard because Taylor wants all my attention after I come back but Savannah never sees me so she wants all of my attention also.....what to do??!!

I am hoping the last 3 days of chemo for this round go well....keep your fingers crossed!!

Have a great Monday
Love,
Kristen

Taylor Had Visitors Today!

TGIF!!! I hope you all have had a great week. Day 3 of chemo and she is doing well. She had a great day and seems to be feeling really well. Other than fighting the eye drops that she has to take every 4 hours, she has been great about everything. She needs the eye drops during the 8 days of chemo to help her not get conjunctivitis. The drops burn their eyes and she hates them. Her appetite was decent today and her spirits are good!!

Each day we wake up, I search her pillow for more hair loss!! The doctors keep reminding me that she will most likely lose her remaining hair this round! We talk about it each morning and she amazes me with her strength...she keeps saying, "hair doesn't matter Mommy!!". She is too cute!!!

I am planning on going home tomorrow afternoon through Sunday. Grandma will be coming down. Taylor's counts are high enough still to go to the playroom every day...she is in heaven!!

Have a great weekend. If I don't post tomorrow it is because I am home enjoying some time with Savannah and Sean. Will post again on Sunday when I get back.

XOXO
Kristen

Good morning all....TGIF! I will post a blog later tonight about how Taylor is doing but forget to leave some information for all of you last night.

I grew up in Flagstaff, Arizona and went to high school with Dallas and Don Merrick. Coincidentally, Taylor and I are next door to a little boy named Dawsom Merrick. Dawson is Don's son!!! He has just undergone a bone marrow transplant. I would ask that all of you put Dawson and his family into your prayers. To hear Dawson's amazing story and journey, please visit Caringbridge.com. Enter in Dawsonmerrick (no spaces) in the website search....

Dawson and family, we are praying for you!!!

Love,
Kristen

Hello all - Day 2 of Round 2!!! She had a pretty good morning...."Aunt Betty" (one of my closest friends) stayed with her while I went to work. They painted nails, did crafts, and Taylor took MANY pictures of herself, stuffed animals, and hospital room on Betty's camera!!! She enjoyed her time with Betty and was sad to see her go.

She had a bit "rougher" afternoon. She threw up a couple of times but still had a lot of energy. She went to the play room and got to see her sister, daddy and Grandma. Her appetite is already not great but we are still getting food into her each meal....she still loves Cheetos!!

One of her teachers, Miss Amy, stopped by tonight and she really enjoyed her visit. Her favorite nurse is taking care of her tonight so she is very happy. She had a long day and didn't fall asleep until 9:00 but all in all the day was ok!!!

She still has a decent amount of hair left but they think it will all be gone by the end of next week. She seems a little more concerned about it than when it initially fell out but is still being very strong. She continues to refuse the mouth care that is necessary to help with mouth sores caused by chemo so I am praying she doesn't get the horrible sores that I hear about.

That is all for tonight....hope you are all doing well.
Love,
Kristen and Taylor

Well Round 2 of chemo has officially started. We are back at PCH and have already had a very eventful day. We started with a Lumbar Puncture. Taylor handled it well and the results were GREAT. Her spinal fluid continues to be leukemia free!!! She was a given a dose of Chemo in her spine as a precaution. Taylor got to see her "old roommate" Elijah today and was very happy to see him. Elijah is awaiting transplant and not doing well right now. Please pray for him.

Taylor then had an Echo cardiogram and EKG to make sure that her heart has not been affected by the chemo. I have not gotten results back yet.

Taylor has already started throwing up from the chemo she was given in her spine. She had a rough start but is sound asleep at 5:00 (thanks to Benadryl). We are waiting for her Chemo to get started through her central line. She will be back on Zofran (anti-nausea med) soon, so I am hoping the nausea will be a thing of the past.

She is in good spirits but keeps asking when she can go home....how do you explain that she can't go home for at least a month???? So sad!!

That is all for today. I am still working this week and next so will be in and out as long as Taylor is doing ok. Friends and family will be staying during the day and I will be back every night.

Thanks to all who helped contribute to Gina's garage sale!! A huge thank you to Miss Gina for her help and support...you are the best!!

XOXO
Kristen and Taylor

Round 2 Begins!

Happy Monday to all. As many of you know, today was a big day for Taylor. We had Taylor's 2nd bone marrow aspiration to determine if the first round of chemotherapy worked. Before going in today, I was under the impression that we would walk out of the clinic knowing exactly where we stand.....that is not the case!! There are 2 pieces to the puzzle...the first piece ended with GREAT news....she is in partial remission (YEAH!!!). The second part of the puzzle is still to be determined. With Taylor's risk category of AML being Intermediate, there is a need to send her bone marrow out to the Mayo Clinic for further testing. This is the piece of the puzzle we are still waiting to hear back on. We should know the results by the end of this week or early next week. With this being said....we did receive GREAT news today and will celebrate this victory. Once we get the "final" results in, we will have a better overall picture of how she is responding!!!

The bone marrow aspiration went well and she is doing well. She is having a little pain at the site but hanging in there. I haven't given her any pain medication yet...we will see how she is doing at bedtime.

We are going back into the hospital on Wednesday for the start of Round 2. At this time, she will also have a lumbar puncture to check for any leukemia in her spine/brain. She will receive a dose of chemotherapy in the spin as a precaution (this is the same treatment protocol as round 1). She will also being getting 8 days of chemotherapy through her central line on Wednesday. This round/block of treatment should last another 4 -6 weeks and then out for our 2nd break!!

The girls are so happy being back home together...it is so hard thinking about packing up again and going back into the hospital. Taylor is already telling me she "wont' go!!" Many of you have asked about visitors...we should be up and running for visitors starting on Thursday. Wednesday is going to be a long day - lumbar puncture, Echo cardiogram, EKG, and chemo..... I am planning on going back to work on Tuesday, Thursday and Friday. Feel free to visit during the day (I just might not be there). Family will be staying with Taylor while I am gone.

I will post again on Wednesday after we get settled in. Thank you all for your prayers this past week...it worked!! She is off to a GREAT start after round 1.

Love
Kristen

Hello all - hope your week is going well. Our week is going well. We are all home together and enjoying every minute of it. It is hard to leave each and go to work but it is also nice to have a "little bit or normalcy" back!!!

I just wanted to provide a quick update....Taylor might not be admitted back to PCH on Monday. She is going to have her bone marrow aspiration and lumbar puncture at the outpatient clinic. Depending on what her platelet count is, she might not be ready to start round 2 of chemotherapy until later in the week. So.....I know a lot of you had asked about visiting on Monday or Tuesday at PCH....not sure if we will be there. Please call PCH at 602-546-2025 (that is the nurses station on floor 2) and ask if she is back before coming down to visit. The doctor felt that it might be Wednesday before she is admitted....we will take 2 more days at home!!!

I will update you more as I know more...it changes every day/hour/minute!!!

Thanks,
Kristen

Sisters Glad to be Together Again!

Tuesday, July 14th will go down in history as one of our best days....Taylor and I got to come home. We were expecting to "get released" tomorrow but I went old school and put my "sales" hat back on with the doctors!!! I didn't really "sell" the idea of getting out a day early, I begged and pleaded!!! It worked. Taylor's counts were actually below what they would like to go home but because she was close and because I promised to keep her home...they let us out!!! I wish that I would have had a video camera when the doctor asked her is she wanted to go home...I haven't ever seen her so excited!! She almost started crying (as I was bawling!!). Anyway....we are home. The first thing she did was hug and kiss Harley....she missed him so much. The second thing she did was put on her Belle dress and twirl around like a princess. Now that she is "free" and not attached to an IV pole, she can run, dance, twirl, and roll around....and she has done all!!! She helped Mommy unpack and do some laundry and waited patiently for Savannah.

We didn't tell Savannah that Taylor was home. Sean called as they were coming around the corner and Princess Belle (Taylor) and I were waiting outside. I could see Savannah screaming and kicking her legs in the car....Taylor ran into the car and their were hugs and kisses (and Mommy tears!!!).

The girls played all evening and we had our first family dinner in over a month...pure heaven!!! They are both in bed early tonight...Taylor was exhausted..I am sure she is already asleep soundly in her own bed...yeah!!!

Tomorrow - back to the real world. I am going back to work for the rest of the week. Daddy will stay home with the girls on Wednesday and Friday and Grandma is coming over on Thursday.

Many of you have called about visiting this week...please call me and we will see how things are going. It is not that we don't want to see all of you but we really do have to still be careful, so please call me (602-330-7780). We do want to see all of our friends!! The doctors have advised that she should not be around ANY children at this point. Also, please remember that we will be going back in to start round 2 of chemo on Monday. Her counts should be high at this time so having visitors next week at the hospital would be the best.....she will need the distraction and she wants to see all of you.

Round 1 finished...let's just pray for remission. Monday is going to be a long day. Because I am going back to work (and have TONS to do) and because I want to have as much family time as possible, I may not post every day while we are home. I will definitely give a quick update or two but most likely not every day...hope you all understand!

Thanks to ALL of you for your support, prayers, and gifts....we are so blessed to have you all in our lives!!

Love,
Kristen

PRINCESS TAYLOR IS HOME!!

Hi, it's Sheri. Kristen just sent me this picture to share with you. Tay got to come home a day early, and word on the street is it was to be a surprise for Savannah, so Kristen, we want to hear about Savannah's reaction! And by "we" I mean "me"!

Also, please remember that July 31st is the last day to purchase "Taylor Charms"! They are not open on the weekend so you'll want to pop over during the week or call them at 602.325.1888 and they'll ship you the charms at no extra cost. There is a link on the sidebar that will take you right to the page with pictures of the charms.

Welcome home, Tay!

Happy Monday to all. Taylor had another good day. Her blood counts tripled from Sunday to Monday which means we are most likely getting out of here on Wednesday...yeah!!! We can't wait to go home. The only bad news about this is that our first "break" is going to be VERY short. Normally each break is 7 - 14 days. We only get 5 days. We have to come back in on Monday. Monday she will undergo a bone marrow aspiration which will tell us if she has gone into remission (please pray for her!!). She will also have her second lumbar puncture. This is done to determine if the leukemia has gone into her spine and brain. Her first lumbar puncture showed no leukemia in the spine or brain so we are assuming/hoping this is the case again. Just like the first time, she will receive another dose of chemotherapy directly into her spine as a precaution.

Even though we will only be home for 5 days, at least we will be home. She is more excited to see Harley (sorry Savannah and Daddy) than anyone else. She misses her dog so much!!!! She keeps telling me she wants to give him SOOO many kisses. She is already concerned about the sleeping arrangements at home. She has gotten so used to sleeping with Mommy every night...she asked me today if she could sleep in my bed and Daddy could sleep in the extra room????? So...we will see how the sleeping goes once we get home.

We did also find out that Savannah is NOT a bone marrow match for Taylor. This is not the best news. Taylor's best prognosis was that she and Savannah would be a match and she would receive a bone marrow translplant. So....now we have to wait and see what the next step is. No matter what, she will continue with the chemotherapy, just not sure about a bone marrow transplant from an unknown donor.

That is really all for today. Can't wait to get out of this place. I also want to thank my 4 great friends who helped Sean and I at the house tonight to "steralize" the house for Taylor's return. Thank you to Kim, Jessica, Betty and Jamie....you guys are the best. Thanks also to Special Grandma for sitting with Taylor so I could go home and clean.

Have a great Tuesday,
Love,
Kristen

Sunday, July 12, 2009

Hello everyone. It's Sean and I am back at home after 2 great days with Taylor at the hospital. She was really in a great mood all weekend and I was able to get her to both eat and nap. Our life revolves around a white piece of paper that carries all her vital #'s on it that we receive every morning. This weeekend the paper looked pretty good. We had one incident at 3:00 in the morning where she called out Daddy but it was only to say, "I love you." This has made everyone in the family more emotional as Savannah throws it around as well, telling me she loves Daddy "this much" spreading her arms out wide. Savannah has been great for me at home and I appreciate everyone that has stopped by to feed us or get their nails painted. In closing I would like to thank my wife for everything that she is doing for Taylor. Kristen is being incredibly strong and brave for Taylor under the worst of circumstances. She is amazing! I can only hope that the 2 days I was able to spend at the hospital gave her some rest for the next week to hopefully complete Taylor's first block and get her home for 1 week. There are 2 beautiful, strong, brave ladies in room 204 and we can't wait to have them home. I love you both.
Sean

Hello all - hope you had a great weekend. I have forgotten how HOT Arizona is in July. After being inside for the past 3 weeks, I came out to a blast of heat...my car read 119 today as I was driving back to the hospital.

After 48 hours away, I came back to a happy Taylor. Her counts are continuing to rise and she is doing well. Her appetite is slowly coming back and with some coaxing she is getting a little food down throughout the day. She is even eating some candy....she needs calories!!

Because her counts are going back up and she hasn't had a fever for days, we had a few visitors come by this weekend. She is so excited to have visitors...it is great for her spirits. So....if you would like to come by, please give me a call. As long as you aren't sick or haven't' been sick lately, it should be fine. Please, please, please, if you feel the least bit "icky", visit when you are feeling better. We are also still not having kids come visit....it is just too risky. If Taylor continues to increase her blood counts and doesn't get a fever or infection, we might be home for our first break this weekend. If she was to get an infection, we would be here for an extra 10 days worth of antibiotics. So, again we ask, please help keep Taylor infection free!!!

We still haven't gotten the results of Savannah's blood test to determine is she is a potential bone marrow donor for Taylor. Hopefully this week...

Hopefully for the next couple weeks my posts will all be about Happy Taylor!!!

Thanks for all your prayers!!

Love,
Kristen

TGIF!!! I am happy to report that Taylor and I had our first good day in a long time. She received a transfusion last night and it really helped her feel better. The docs had told me that transfusions were always a "pick me up" to the kiddo's and this one really was for Taylor. She ate well, drank juice today (hasn't been drinking anything but water for weeks) and played a lot. Her counts are finally creeping up....very slowly!! The doctors said that there is a small chance we could be home for our first break next weekend (very small) but it gives me some hope!!!

The only "bad" part of our day was when I had to change the dressing on Taylor's central line. I tried to put myself into my "nursing mode" (haven't been a RN for 13 years)but their is no "nursing mode" when it is your own baby!!! It was really hard but we got through it. Mommy cried just as hard as Taylor.....but it is done and we are good for another week. I used to love Fridays, now I dread them...they are dressing change day!!!

Daddy is with Taylor tonight and tomorrow night. I need some much rest/sanity and Savannah/Harley time. Savannah and I got our nails done and had In-N-Out tonight...very fun. We have a birthday party tomorrow and we are going to have a movie party tomorrow night. She wants to make popcorn, watch Cinderella, and sleep in Mommy's bed...twist my arm!!

I am praying that we will be open for visitors next week. Once I talk to the doctors on Monday AM, I will let you all know.

I am most likely not going to post anything tomorrow....going to spend all my time with Savannah. I will provide an update on Sunday night when I get back to my "other home".

Have a great weekend.
Love,
Kristen

Souza Family Pictures

Hi, it's Sheri. The beautiful pictures I posted yesterday came from Kristen and these pictures were taken over the past few years and were sent to me from a close family friend. I know for those of you who have never met the Souzas it's nice to put faces with the names.

It took me half a bottle of wine to figure out how to post the slide show on the top of this page, but for the good of the people, I am willing to open a new bottle tonight and try and add these pictures to the slides.

Another fun day at PCH. Taylor didn't have a great night last night.....she tossed/turned most of the night. So, she started her day off very tired. Her blood counts continue to be at zero. There was a slight increase in her WBC which could mean that her counts might start to go up or it could mean nothing. Like I have mentioned before, there are NO DEFINITES in our new life. It is all a guessing game. Taylor did not spike a fever last night and her blood cultures have not grown any bugs....that is great news. They D/C'd one of her 3 antibiotics today and will take another one off tomorrow (if no fever tonight).

Tay and I made a birthday card and necklace for our good friend Kylee today. Happy Birthday Kylee...we love you!!!!

I had the pleasure of meeting with a wonderful child psychiatrist today...they are worried that Taylor will not take ANY of her meds by mouth. The psychiatrist is going to work with myself and Taylor on ways to get her to take her oral meds. Another doctor!!!!!(she was extremely nice!!!)

Taylor continues to not have any appetite. Every bite I get in her mouth is a struggle, but a victory. Even thought calories are all that matter at this point, I struggle with offering her ice cream with sprinkles for breakfast!!!! It doesn't really matter because she won't even eat that!

She wanted to watch TV today around 2:00 and is still sleeping at 5:30. She is going to get another transfusion tonight (which means benadryl) so she will hopefully sleep through until morning. Her little body just needs rest at this point.

That's all for today.....thank you again for your posts....they truly help me get through these VERY long days!! FYI.....I know I have been really bad about returning calls this week.....it is not any of you, it is me...just having a down week.

Love, Kristen and Taylor

Happy Wednesday to all - not much to report for today...another day in Paradise!!! Taylor spiked a fever again last night but nothing has grown on her blood cultures....meaning she most likely doesn't have an infection...just a fever. She had a much better day and played with her roommate most of the day. My roommates mom and I took turns bribing the girls to eat. Who would have thought ever getting Taylor to eat would be hard???? She ended up eating a little today...enough to stay away from the feeding tube (NG tube) for another day.

We are really just waiting for her counts to come up so we can go home for our first break. If all goes well and she doesn't get an infection, we might be able to go home by the end of next week!!

We are also still waiting for the results of Savannah's blood draw. As I mentioned before, there is a 25% chance she is a bone marrow match for Taylor. We hope to get the results early next week....

That's all.....I am exhausted. Going to try to get to bed early tonight.

Love,
Kristen and Taylor

I had high hopes that yesterday was just a bad day and that today would be SO much better. I was sadly mistaken. Taylor spiked a fever in the middle of the night. She immediately had blood cultures drawn and was started on "triples". Triples are 3 extremely strong IV antibiotics. They cover a wide spread bunch of bugs. Because of this, Taylor was put on room isolation for the day. This meant no visitors (daddy, grandma, or Savannah). I had to wear a gown, mask, and gloves each time I left the room. As of about 2:00 this afternoon, her blood had not "grown" any infection, so they thought the fever was just from her blood counts being so low. The antibiotics are being kept running for 3 days as a precaution.

Taylor has developed very swollen gums and is starting to get mouth sores. This is another wonderful side effect of the chemotherapy. Because of this, she really is not eating at all. I am able to get a couple of bites of food down her and some GoGurts. She also ate some frosting off of a couple of cupcakes. She is down almost 2 pounds. The doctors will be talking to me tomorrow about what needs to be done. She will most likely need the NG (down her nose) for nutrition.

She was actually in better spirits today and out of bed most of the day. She is still extremely hard to please but we had a few laughs today!!!

They just did her PM vitals and she has spiked a fever again....not good news. This will mean she is back on "room isolation" tomorrow....oh how fun!!!

Not much good news today....hopefully tomorrow is better.

XOXO
Kristen

This was a really long Monday!!! Taylor is at day 2 of her blood counts all being at zero. She will be getting platelets again tonight. She had a really tough day....she has no energy, no appetite, but has a strong TEMPER!!! Mommy could not do anything to please her today. She (and I) are both over all the craziness. Today we saw 5 doctors - oncologist, oncologist NP, infectious disease, dermatology, and general pediatrics!!! Her rash is still very bright but is not bothering her. She is borderline for a fever, but so far hasn't needed anything for it.

I was under the impression that once her blood counts hit zero, they would rise up right away. I was informed today that is not the case. She will hover around zero for roughly a week. Because of this, we are still asking for no visitors. She is just at such a high risk that we are trying to keep her in a bubble!! Once her counts start to rise, we would LOVE visitors.

As for Taylor's hair...it is almost gone!! She told me today that her "friends won't want to play with her because she doesn't have hair!!" Through tears, I explained that is not the case....breaks my heart!!!

That is really all for today....hope you all had a great Monday!
Love,
Taylor and Kristen

Hello all - I am back at my "second home"....PCH!!! 48 hours away from Taylor....although, it was GREAT to be with Savannah, it was really hard to be away from Taylor. Like I have mentioned before, balancing my two beautiful babies is so hard. I am glad to be back with Taylor but already missing Savannah and HARLEY!! Out poor Harley is getting lost in the shuffle. He had a good day today....he got to go swimming with Savannah and I...he also slept on the bed next to me all night last night!!!

Walking into Taylor's room today and finding her with very little hair left was so hard. She will most likely lose ALL her hair by Tuesday or Wednesday. I ended up cutting alot of hair off to make it more one length. She had lost so much in the back and there were so many long hair left hanging...my mom and I thought it would be better to try to even it up. No matter what...she looks beautiful!!!

A dermatologist came by to see her today and feels that the red rash on her cheeks, arms, and ears is a side effect/drug reaction to one of the chemotherapy drugs. They aren't going to do anything right now..just watch to make sure it doesn't get worse. It doesn't seem to be bothering her.

Savannah was not able to come down with me today to visit "sissy". She has a runny nose...it might be allergies, but it might also be a cold. We decided it wasn't worth possibly infecting Taylor. A big thank you to Marty, Taylor and Cameron Dempsey for watching Savannah for us for a couple of hours. Hopefully Savannah will be down this week...they both really miss each other.

As always, thanks for the posts and comments....they are the highlight of our day. We love you all,
Taylor and Kristen

Happy 4th of July!! I hope you are all enjoying your holiday weekend.

I am still at home. I am going to stay home again tonight with Savannah and Sean is going to go down and relieve Grandma at the hospital. It is SO hard being away but great to be with Savannah.....it is so hard to balance this all!!!

Taylor's rash is getting worse...the doctors have asked for a Dermatology consult....keep praying it is not an infection. She still doesn't have a fever so that is a positive sign. Her blood levels are at the lowest they can be. The only good thing about that is they will slowly start to rise and she will feel better. I am hoping another couple weeks and we will be home for our first break.

Quick post today...trying to be with Savannah and get all of my "stuff" done around the house. A special thanks to Grandma for staying last night......we would not know what to do with out you....

Love,
Kristen

TGIF!! I hope you are all having a great start to your Holiday weekend.

There is really no change from yesterday. Taylor continues to feel "crappy" and is not eating well. She has developed a rash on her cheeks and arms. They are not sure if it is a possible viral rash or a side effect from one of the chemo drugs. They are just watching it for now.

Taylor had her bandage change over her central line today. Just like last time, it was horrible. Her skin is extremely sensitive and bruised from the last bandage. Once she comes home, I will responsible for doing the dressing changes every Friday....that should be tons of fun!!!

I am at home tonight spending some much need time with Savannah. We did crafts, played games, and read books. She is being such a good girl and I miss her so much!!! I am planning on spending all day with her tomorrow!!! It is good to be home!!!

Have a great 4th....will update again tomorrow.

Love,
Kristen

Good morning everyone - hope you are having a great day.

Taylor slept really well last night. She is again not feeling well, her blood counts continue to drop and her chance of fever right now is about 100%. Hopefully if/when she gets a fever, it will be contained with Tylenol, but they say you never know. Just because she gets a fever doesn't mean she will end up in the ICU, so please pray that doesn't happen.

Her hair if "officially" not starting to thin out, it is falling out by the handfuls. Taylor and I have been talking about it alot today. I also purchased some fancy headband and she is excited to start wearing them. She has decided she wants to wait until the hair is all gone before she wears them......whatever works!! I am still devastated by the hair loss but know that is the least of our problems. Like my good friend, Sheri, said....this just SUCKS!!!

Savannah, my other angel, was a very strong, brave sister today. Savannah and Mommy went and had her blood drawn to see if she is a potential bone marrow donor for Taylor. She was so good about it....I think I cried harder than she did. I just sat there thinking, "what if she comes back with leukemia?" I am really trying not to think about it.....I am just praying she is a match for her sister. At first, I was not sure about having Savannah donate bone marrow for Taylor.....I didn't want her to go through it. But, if she is, we will most likely have her donate to Taylor because it is Taylor's best hope for complete remission. One day at a time.....the results should be back next week.

I would ask all of you that are praying for Taylor to add her roommate, Elijah Rubio, to your prayers. He is a 2 year Down Syndrome child with AML. Elijah has completed 2 rounds of chemo and got to go home today for a 10 day break. I don't know yet what happened, but I do know that his parents received really bad news from the doctors today. I have come to love Elijah and his family so much over the past 13 days. His mother and I pray together every night before we go to sleep. Please add them to your prayers....they need it!!

Nothing much more happening.....talk to you all tomorrow.

Love,
Kristen and Taylor

I can't believe it is July 1!!! Today is definitely not one of Taylor's good days. She is feeling absolutely crappy. She (we) did not sleep well. All she has wants to do today is watch movies, do a few crafts, and has been sleeping since about 12:45. Her oncologist just came by and said this is to be expected. Her blood counts are so low.....she explained that Taylor probably feels like "she has been run over"!! I feel so bad for my poor Tay-Tay. I wish it were me instead of her.

Today is not one of my best days either. Taylor doesn't know this but when I brushed her hair this morning, I noticed it is starting to really thin out. There was TONS of hair in the brush and even a few long strands hanging down. I know that in the big picture of things, Taylor losing her hair is not a big deal....but it is a big deal to a mom!!!! It makes me so sad. I know that Taylor is beautiful with or with out hair but know that having no hair is going to be really scary to her!!! I keep telling myself that this means the chemo is working and she is on her way to better health.....but, it is hard to see!!!

That is all for today.....going to sit outside for a few minutes while she is sleeping. I need some fresh air!!! Who would have ever thought that I would want to be outside in July!!!!

Take care,
Kristen and Taylor