Chemo is officialy finished!!! Yeah!!! Taylor had a great morning. She slept in a little bit this morning and played with her adorable roommate Elijah on the floor today. Her rommmate is a 2 year Down Syndrome child with AML also. He is one of the cutest babies I have ever met. Since we have been here I have taught him to blow kisses and he does it all the time now. He and Taylor are BFF's and his Mom and I have gotten really close. As I am in the hospital feeling sorry for myself, I think of Brandi, my roommate, who has 4 other children at home. Both of the parents are unemployed and most likely will lose their house in the next couple of months.....so, I have much to be thankful for!!!

Taylor is starting to act like she is coming down with a cold, so keep your fingers crossed that does not happen. The RN's have said that even a minor cold will land us in the ICU for a week or two!!!!

Savannah went back to camp today and had a great time. She will be tested on Thursday to determine if she is a bone marrow match for Taylor. Poor Savannah will have to have a blood test for this....I feel so bad for her. There is about a 25% chance she will be a match and the results will take about a week to come back.

I received a beautiful gift today. Moda Fina sent over a necklace with my "Taylor charms." I love it and can't thank the Moda Fina family enought for the necklace and for doing this for my family.....thank you!!!!

Trying to get Taylor to bed tonight before 10:00. I would love to be able to watch something on TV other than Cinderalla or Dora the Explorer!!

Have a great night.

Love, T & K

Hello all - after a much needed 23 hour break, I am back with Taylor. She had a good night and day today with "Special Grandma" (as Taylor and Savannah call my mom!). She had a transfusion last night and did fine. She was given Benadryl before bed to help her sleep last night....finally she slept for 11 hours!!! It was much needed by Taylor. She didn't nap today but feel asleep about 5:15 watching TV. She is getting a platelet transfusion tonight and will be given Benadryl again with this...so I will let her sleep right now. Her blood counts are even lower today. She will continue to go down and it will take 8 - 10 days to come back up. Today is her final day of chemo (YEAH) this round. The doctors tell me they actually feel worse after chemo because their blood counts drop so low. They can also feel very achy from the chemo...I am praying she doesn't go through this.

After much thought and debate (and advice from doctors), Sean and I have decided that we are going to ask for no visitors until her blood counts begin to rise. The doctos have warned us to especially shy away from children visiting right now...there is just too high of a risk for infection from children. I am so sorry to not be able to see all of you for a week or so but think it is best for Taylor. Because people can be "carrying a cold or bug" for about 3 to 4 days before they show signs and symptoms, it is best to keep her away from everyone for now. Her risk of infection is so unbelievable high and a small bug could send her straight to the ICU....which would push me over the edge and could be life threatening for her!! So....once she is on the rise again, I will let you all know and we will be anxiously awaiting visitors again....thank you for understanding.

Many of you have reached out and asked what Taylor and I need right now....thank you so much for your generosity. Because we have been blessed with so many good friends and have received so many fun presents for both girls...we are good right now. I know that Taylor and Savannah would LOVE to get new stuff when we come back in for round 2 but have enough right now. Because room changes are so common, I am trying to scale down in the room. A room change is SO much work for me and if we move our next room will be smaller. Please know we appreciate everything you all have done....thank you!!!!

After reading my post, please scroll down and see the post from my good friend Sheri....she has posted the "charms" from Moda Fina. They are so adorable!!! To our friends at Moda Fina - thank you so much. I can't believe you have done this for Taylor....you guys are amazing!!!

I hope you are all having a great start to your week.

We love you,
Kristen and Taylor

"TAYLOR CHARMS"

Hi, it’s Sheri, your friendly blog hacker! Two quick notes. First, if you would like to subscribe to this blog to receive Kristen’s posts in your “In box,” please follow the instructions to the right of the slideshow. Every night any post she wrote in the past 24 hours will be delivered to your e-mail. But please remember to still stop by the blog and comment!

Secondly, and way more importantly, an exclusive fine jewelry store in Phoenix heard of Taylor’s illness, and realizing the incredible financial burden that accompanies it, has reached out to the Souza family. Their design department has created gorgeous pearl, colored stone and 14K gold charms and pendants they are calling “Taylor Charms.” ALL of the proceeds go directly to Taylor’s family! This is a beautiful gesture and a such a sentimental way to support Tay Tay.

If you would like more information on “Taylor Charms," go to http://stilllovingtaylor.blogspot.com or ” click HERE!

Hello everyone- quick post as I am getting ready to go home to spend time with Savannah. Taylor was given Atavan last night at bedtime for anxiety and had a bad reaction. The medicine made her weepy and she cried most of the night. She was scared from how it made her feel....so no more Atavan.

She has to take Bactrim (an anitbiotic) on Saturday and Sundays to ward off infection. She spit both doses out yesterday and her morning dose today was thrown up. So...they are talking about putting a NG tube down her nose for oral medications. I of course am not advocating for this but if it would mean she would not fight so badly with the oral medications, it might be worth it.

She is getting platelets and RBC's today. She will be given Bendaryl with this for possible allergic reactions so at least she will get a little sleep.

My mom will be staying with her today.....thank you to Grandma!!

Hope you all had a great weekend. Will let you all know how she is doing when I get back tomorrow.....

XOXOXO
Taylor and Kristen

Hello all - It is close to 1:00 on Saturday and Taylor is sleeping. Yesterday, last night, and today, have been our hardest days. I forgot to mention that on top of the bad news yesterday, Taylor had to have her central line dressing changed. It gets changed every Friday and as you can imagine it was BAD!! They had her lay on top of mommy and was help down by 2 nurses while one changed the dressing. Daddy tried to distract her but she would have no part of that. The dressing is SUPER tacky and is hard to get off. They told me that usually by the 3rd or 4th dressing change, the skin is so broken down that it will tear with the dressing change. Taylor screamed louder than I ever thought possible. The nurses were great and did a super job....Tay was just really scared. Hearing your child scream like that is really hard to be part of!!!

She threw up for about an hour last night and finally crashed around 11:00. She did not get a good night of sleep and is very crabby today. Her WBC is at 0 and her RBC and platelets are very low. She will most likely be transfused with platelets and RBC tonight or tomorrow. We are now VERY confined to our room because she is so immunocompromised. She is very pale and not herself today. They have told me that when their counts go down this low, they feel really crappy and she does!!!

She has lost almost 1 pound since we have gotten here so they are considering putting her on TPN nutrition. This will go through her IV. They are really strict on the babies not losing weight. I never thought I would have to worry about Taylor not eating....but she doesn't even want candy or ice cream.

I feel bad leaving such a "downer" blog today, but comments have been that you all want to know what is truly going on. I am doing my best to pick myself up today but just not having my best day. I think reality is finally settling in and my new reality sucks right now.

As always, your comments and prayers do make me feel better.

Love to you all,
K and T

Today was a long day. Taylor is actually feeling really well and had a good day. You know she is feeling good when she and Savannah fight their entire time together!!!

The long part of the day came when one of the oncologists came by to see me. We all know Taylor has AML but we have been waiting for some cytogenetics to come back to tell us what risk category her AML falls in. There is low, intermediate, and high risk. Of course, we have been praying for low risk. Unfortunately, Taylor has come back as intermediate risk. What this means is that she will most likely need a bone marrow translplant after round 3 of chemo. Her best possible match is Savannah. We will have Savannah tested in the next week or so. I will write more about this later....I am having a really hard time dealing with the news right now.

That is all from Tay and I tonight.....I am really just really tired.

Love you all,
Kristen and Taylor

I can't believe it is Thursday...one week ago life was normal to us and now here we are living in the hospital on chemotherapy....what a difference a week can make!

Taylor had a bad night last night only because we didn't get a good nurse. Our nurse was VERY loud and didn't seem to care that any of us were sleeping. She woke Taylor up all night and was not very compassionate. She will not be taking care of Taylor ever again....the great thing at PCH is that if a parent complains about a nurse, they are never assigned to the patient again.

Taylor's counts were high enough today that she was able to leave the room for a little bit. Taylor and I did crafts together in the play room this morning.

This afternoon was a little scary. Sean and I have chosen to enroll Taylor in a ongoing leukemia study with a trial chemo drug. Taylor was randomized to the study medication and received her first dose today. Because there was a very high chance that she could have an allergic reaction to the drug, she was given benadryl as a precaution. The benadryl knocked her out and she has been asleep for about 4 hours....much needed sleep for Taylor!!! The scary part was when the doctor came in to talk to me about potential reactions....my heart stopped. Her reactions could range from swollen eyes and lips, throat swelling, hives, or complete anaphylactic shock.....but, she made it through with no reaction.

Since we have gotten to the hospital, Taylor has reverted back to baby talk and she is now lisping. I am really concerned about this but the nurses say it is normal for regression early on. Hopefully, this will get better.

I hope you are all doing well. Again, thank you for your prayers! They mean alot to us.

Love,
Taylor and Kristen

Day 5 - Having the Zofran going around the clock is helping Taylor so much with the nauseau. She had a fun day with Grandma today....they did crafts most of the day. Her blood counts have gotten really low. Her white blood count is at zero which means that she is at a super high risk of infection right now. She still hasn't needed another transfusion...yeah!!! The doctors have told me that the next 5 days of chemo are going to be rough....she will get pretty sick!!! After the last dose of chemo is when she could feel the worst. Many children have to be give pain medication because their bodies are in so much pain....I am keeping my fingers crossed that Taylor is not one of these children!!!!

I spent the day with Savannah. We went to the gym....Savannah wanted to do crafts in gym daycare and go swimming with Mommy. I went upstairs to work out and after about 10 minutes here came Savannah with one of the girls from daycare....she was missing Mommy to much.....which was fine with me. So....went had fun swimming and had lunch. We ran a few errands and came back to see Tay-Tay.....Savannah kept telling me to drive faster to the hospital...she wanted to see "sissy".

As we were driving down, I talked to my mom and was informed that we were moving to our 3rd new room at the hospital in 5 days. As you can imagine, I was not pleased. Long story short.....it took a lot of time to get her moved, but her room is bigger and nicer, so we are happy. It seems weird to me that the hospital moves patients that are going to be in for 6 weeks, but I guess they do!!!!

I again want to thank everyone for your comments....they truly keep me going!! I can't wait to read them every day. I also want to apologize to everyone for not getting thank you notes out for the amazing gifts we have received. I am normally really good at getting them out, but I can promise everyone that is won't happen this time....sorry! We truly do appreciate all the gifts for Taylor and Savannah......I hope that is thanks enough!!!!

My friend Sheri (the blog creator) posted a comment today that made me laugh....she asked how Savannah's hair looked now that Daddy was doing it.....well.....it is better than I thought!! Sean is doing a great job with Savannah...she looks adorable every day (not as cute as when Miss Marcy does her hair, but it is hard to compete with Miss Marcy!!!)

I hope you all had a great day.....Taylor is still awake at 10:15 at night so I will sign off and see if I can get her to bed.

XOXOXO
Taylor and Kristen

How to Leave Comments on the Blog

Hi, it's Sheri, creator of the blog. I am so sorry so many of you are having trouble leaving comments on the blog. I guess making a blog so the Souzas could communicate with us, then not telling you how to leave a comment isn't as funny as I'd thought it'd be!

The best way to leave a comment is to click on the small word “comments” after a post. Scroll down to the bottom of the page and you will see a white box where you can write your message. Below that you will see “comment as” followed by a drop-down box. From the drop-down box choose “anonymous.” After you write your message of course you’ll sign your name so Kristen and Sean will know who the message is from. If you’ve been able to leave messages through your Google or AIM account that’s great, too, but this should serve the masses well. Please feel free to e-mail me at sheriaz@cox.net if you are still having problems and I will personally help walk you through it.

I know receiving comments are a highlight of their day and are very much appreciated! I also wanted everyone to know that the donations, both big and small, are making a difference. It feels wonderful to know that we are contributing in some small way to alleviate some of their stress. As fundraisers become formalized I will pirate this blog from Kristen and keep you updated. Thanks again!

Day 4 and it seems like Day 104!!! Taylor was very sick this morning and threw up for about an hour. Thank goodness for Zofran (nausea medication)....it is her new best friend!!! They were planning to only give Taylor the Zofran during her chemo treatments (2:00 pm - 12:00 am), but I pushed to have Zofran given every 6 hours to keep her from throwing up again. I know it is super hard on Tay-Tay to throw up, but it is so hard to watch. She is just so little and scared when she starts throwing up. So...now that she is on Zofran around the clock, I am hoping she won't be as sick. Her blood counts dropped considerably from yesterday.....the doctors ensure me that this means the chemo is working and the leukemia is dying!!!

She is starting to get back on her nap schedule....I really think this will help her. She falls asleep every day watching Cinderella.....her new favorite movie!!!

I am going to go home tomorrow to spend the day with Savannah....Grandma will be with Taylor all day. I had lunch with Savannah today and she said that she "hates her sissy being sick!". She wants mommy and sissy to come home!!

For those of you who have posted comments on the blog....thank you so much. It really helps me get through each day hearing your thoughts and prayers. Thank you also for the donations.....Sean and I are so scared about the financial side of all this and your amazing generosity helps so much.

Since I will be with Savannah tomorrow, I am not sure if I will have time to "blog". If not, I will be back on board for Thursday.

XOXOXO,
Taylor and Kristen

Hello friends - Day 3 of chemotherapy just started! We start around 2:00 every day and the chemo runs until about midnight!!! Taylor had a good morning - she was feeling well and had a great visit from Savannah and numerous friends.

Savannah is really starting to show signs of being overwhelmed with "sissy's" disease. She is having a hard time leaving mommy when Miss Marcy brings her to the hospital. She wants Tay-Tay to come home. I am planning on spending the day with Savannah on Wednesday......Grandma will be with Taylor. Thank you ALL so much for the numerous presents for Savannah. I really appreciate everyone thinking of Savannah also and making her feel special.

Taylor's blood counts are dropped very quickly. Her WBC are very low and she is close to being transfused again. With that being said.....the doctors have recommended that Taylor have a couple of VERY quiet days without visitors. She is now confined to her room until her blood counts go back up. So....I am sorry but will stick with the doctors and ask that no one visits Tuesday or Wednesday. I am also trying really hard to get Taylor to rest a little bit more. The past couple of days have been so crazy and she hasn't taken a nap or been to bed before 10:00pm. So....moving forward, Taylor and I ask that she has no visitors between 1:00 and 3:00 or after 6:30. Please know it is not that we don't want everyone to come down, WE DO!!!! Taylor, Sean and I are so blessed to have so many friends and we appreciate ALL of the many visits and gifts that we have gotten. It is just now time for Taylor to get into a schedule in the hospital. Keep in mind......we will be doing this for 8 - 10 months!!

Thank you all again for the prayers and well wishes. We all love you and appreciate everything that you are doing!!

XOXO,
Taylor and Kristen

Hello everyone - Well, we are on day 2 of chemotherapy. Her first night was pretty rough. She threw up quite a lot and also received her first blood transfusion. She did well with the transfusion and had no reaction. She is doing better this afternoon with her second dose.

I received some clarification from the doctor today on her treatment. Taylor will undergo 5 rounds of chemotherapy. Each "round" will be done in the hospital for a minimum of 4 - 6 weeks. After that she will be able to go home for about 1 week and then back in the hospital. If we are blessed enough to have her go into remission after the first treatment, she will be required to still complete the entire 5 rounds of chemotherapy. So.....we are looking at about a minimum of 8 months of treatment, the majority of these 8 months will be spent in the hospital!!! We are in for a long haul!!!

Thank you all again for the many texts, posts, calls, and amazing donations. We really appreciate hearing your supporting words.

Love,
Taylor and Kristen

Hello all - First, thank you SO much to Sheri Granger for setting up this blog. It is amazing and I can't thank her enough for her help!! Sheri - you are the best.

To all who have donated and posted comments, your kindness is amazing and your support is very much appreciated. Having so many friends and family caring about us is going to make this horrific ordeal much more bearable!!! Thank you all for the many gifts, food, and cards we have received.

Taylor started her first 10 day dose of chemotherapy today. So far she hasn't gotten sick. She is being a "princess" and amazing me every moment by her strength. She is in a little pain from a lumbar puncture from yesterday but hanging in there. She will be receiving her first blood transfusion at midnight tonight.....we pray for the best with this.

I will do my best to update the blog every day or so. For those of you who have called or texted, I apologize for not getting back to everyone.....things are just so busy!!! Your calls and texts make my day so much brighter....thank you all.

Keep praying for us!!

Love,
Kristen and Taylor

Dear Friends,

On Thursday, June 18^th, Taylor Souza was diagnosed with acute myelogenous leukemia, a fast-growing cancer of the blood and bone marrow. This is the most aggressive form of leukemia and a dizzying shock to those of us who know and love her.

What started as a routine visit to the pediatrician for an ear infection four days ago has turned into a mind-boggling struggle for a beautiful, dedicated family with a very brave three-year-old with the fight of her life in front of her. Taylor has two loving parents who are prepared to move mountains for their little girl, and a twin sister at home who is already missing “Tay-Tay.”

As I write this, Taylor is undergoing her first round of chemotherapy and her best case scenario is an eight month hospital stay with one week at home every six weeks. She has taken up residence in a shared room at Phoenix Children’s Hospital surrounded by a sea of stuffed animals, lip gloss, and of course- Ariel dolls! She is being shielded from the germs of the outside world for the next few months as her immunity will be completely compromised from the chemo. Her mom, Kristen, will be at her bedside day and night inspiring her to keep smiling and fighting through the inevitable physical pain that will ensue over the coming days and months.

The Souza family is very dependent on Kristen’s income, and at best she will be taking an extended leave of absence from her job, and at worst she will be forced to quit her job.

They are dealing with so much stress right now and they truly need help to make ends meet during this devastating time, so if you are moved to donate, even a small amount, there is an opportunity for you to do so at the top of this page. I have set-up a Pay Pal account under my e-mail address but of course the money is all being transferred to Kristen and Sean’s bank account. Please know the Souzas in no way asked for financial support, but when I asked Kristen if I could set-up a donation account she literally welled up with tears and hugged me. The help is so appreciated!

Thank you so much for your support! This blog will be updated with Taylor’s progress. Hang in there, Tay-Tay! We love you!