Donations can also be made at any Wells Fargo branch:
Project Souza Family
Account number 186-527-1579
Or you can mail a check to
Souza Family
PO Box 28272
Scottsdale, AZ 85255

This blog was created by friends as a way for the Souzas to share Taylor's progress with us. Kristen and Sean have not asked for financial help, but their medical bills coupled with Kristen's loss of income is truly overwhelming. They are so appreciative of ALL of the different types of support they have received and are more grateful than you can know. Thank you!
Taylor is a beautiful, vibrant three-year-old girl who was recently diagnosed with acute myelogenous leukemia, a fast-growing cancer of the blood and bone marrow. On June 18th, Taylor began an 8-10 month hospital stay. This blog will detail her journey back to good health!


Saturday, June 27, 2009

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
Posted by at

15 comments:

  1. AnonymousJune 27, 2009 at 1:24 PM

    Kristen,
    You are a rock! You are Taylor's rock! She needs you more than anything to be strong. I sent the blog to my friend Rebecca whose daughter Chloe had leukemia. She will probably be leaving you a contact number if you want to reach out to her. Chloe said she would love to meet Taylor and be a mentor to her through the treatment process.
    - Jamie

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  2. Mrs. MoralesJune 27, 2009 at 1:36 PM

    Hang in there friends-there will be good days & not so good days-continue to focus on the better! S & G

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  3. Nancy KulesJune 27, 2009 at 2:26 PM

    My heart aches for you... I'm so sorry you are going through all this. What a challenging and confusing time for all of you. When I was spending time in the hospital with a family member, I got some good advice, and, it was easy to do since I kept a blog too! When you're overwhelmed, look back at weeks prior (I know this is still SO fresh for you) and try to see the big picture. How far things have come... Measure in miles, not in inches. By weeks, not days. Good luck to all of you- you're in our thoughts constantly.

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  4. Blog OwnerJune 27, 2009 at 4:09 PM

    Kristen, you're absolutely right. Everyone who reads this blog wants to know what is really going on. And thank you to Sean for always calling right back. Today he picked ME up! I'm sure there's something wrong with that on about six levels, but I appreciated it nonetheless. Hugs to you both :-). And two hugs for each girl!

    Sheri

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  5. Rebecca O'BrienJune 27, 2009 at 6:29 PM

    Dear Kristen,
    I'm Rebecca O'Brien and I am friends with both Jamie Wamsley and Kristine Mower. My daughter, Chloe, was diagnosed with ALL in March of '05 a month after her 6th birthday. Chloe is now a healthy, happy 10 year old. I just wanted to let you know that even though we haven't met yet, I am here for you. Please don't hesitate to reach out if you ever need someone to talk to. I know that when Chloe was going through treatment, one of the things that helped me through it was being able to email with another "cancer mom". This friend was really open and honest and being able to discuss things with her was so reassuring. Also, Chloe said that she would love to meet Taylor if you think that her encouragement would help at all. When Taylor is feeling better and has her immunities back, we'd be happy to make a quick visit to the hospital. Chloe has lots of "leukemia memorabilia" she'd be happy to share....photos of herself during treatment, books, and lots of tips and tools for looking cute without hair.
    Whether you decide to contact us or not, please know that your family will be in our thoughts.
    Rebecca (480)563-4311
    correb@aol.com

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  6. AnonymousJune 27, 2009 at 7:39 PM

    Kristen, You are truly amazing! Taylor is so lucky to have you by her side during this hurdle. You, Sean, Taylor, and Savannah are in my thoughts daily. I wish we were closer so we could help you more; Bob and I are just a phone call away if there is anything we can do.

    You always put 110% in everything you do. I am sure now you are trying to give 110% at home and at the hospital, but please make sure you are taking care of yourself too. We worry about you. And DON'T feel gulity if you need a break or a little time to yourself...this is a lot to deal with.

    Thank you so much for updating us and letting us know how you are all doing. I hope it helps to see how many people are cheering for Taylor!

    Dana Bowdish

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  7. AnonymousJune 27, 2009 at 7:50 PM

    Kristen,
    We are so devestated to learn this news. Please know that your family will be in our constant prayers. Sending love, hugs, positive energy and prayers your way!
    Love, Caitlyn Clark
    caitlyn.clark@cigna.com

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  8. AnonymousJune 27, 2009 at 8:27 PM

    Hi Guys!!
    I hope that Taylor had a better day today! Next time you need to be distracted...I can tell stories of Sugar, Bailey and Speedy! I am thinking of you all day...everyday....and sending hugs and kisses!
    Love and miss you!!
    Marcy (Rand, Justin and Noah too!)

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  9. AnonymousJune 27, 2009 at 9:12 PM

    Kristen-
    That is one of the things I love best about you is your ability to be brutally honest...we all want to know the truth, so keep it coming. I hope and pray that tomorrow will be a brighter day. And if it's not tomorrow, the next day. There is always hope!
    In hope and love!
    Krista

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  10. AnonymousJune 27, 2009 at 9:55 PM

    Kristen,
    Tears are falling from my eyes as I read this post and write this message. Thank you for sharing all of these details with us. Everyone who reads this blog really cares about your family and Taylors fight. I hope tomorrow is a better day!!!
    Taylor...keep on fighting, you can beat this!!!
    With LOVE,
    Laurie T

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  11. AnonymousJune 27, 2009 at 10:58 PM

    Kristen, Sean, Savannah and Taylor,

    I just read the blog for today and I can see it was a rough day. I am praying for a peaceful night for you guys and that tomorrow will be better. She is in such good hands! Taylor is one lucky girl to have two parents who are such advocates for her comfort and well-being! Keep your head up and my kids and I will be sending prayers up tonight for Taylor!

    Liz Olmstead

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  12. AnonymousJune 28, 2009 at 8:02 AM

    Souza Family,
    I personally do not know you folks but my daughter Shelly Bredemeyer sent me the website about Taylor. My heart is with you and so are my prayers. After reading your comments about the challenging day you had yesterday it brought back so many memories of our sons battle with cancer 7 years ago. He is a walking miracle today. I give the Glory to God and the credit for skilled hands and minds to the medical team. Sounds like you are blessed with lots of family and friends. I will add Taylor to our church 24 hr prayer chain.
    Sincerely you are in our thoughts and prayers.
    We Care,
    Jocelyn and Leon Killam, Canada

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  13. AnonymousJune 28, 2009 at 11:02 AM

    Kristen,
    When I read your updates today I just want to say...allow yourself to have those down days. Let your family and friends pick you up and if you can't pick up...that's o.k. too. Just the fact that you would take the time to give us such frequent updates just exemplifies what a selfless person you are. We DO want to hear everything...no matter what the current situation is. Keep taking care of your mind, body and spirit, Kristen. We are all here for you.

    Love Always,
    Suzy Hochman

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  14. AnonymousJune 28, 2009 at 11:39 AM

    Kristen, Sean, Taylor and Savannah -

    We are praying for each one of you - different roles, one family. The last few days blog paint the picture of more excruciating tests of pain, strength, hope and courage. Thank you for the thorough update, Kristen. Reading stories like Rebecca and Chloe O'Brien's combines this seemingly unfair reality with a positive ending.

    You are in our our thoughts.

    The Inglis

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  15. AnonymousJune 28, 2009 at 12:56 PM

    Kristen,

    Hang in there!! Your strength is amazing and I know that Taylor will beat this thing!! I can't imagine the pain to watch your little one go through this, but this is war, and there will be many battles in this war, however, Taylor is a tough little cookie, and she will kick it!!! Period!! Stay strong Taylor, it's not going to be easy, but you can do it!!

    Glen (Cindy's Husband)

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