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!


Thursday, June 25, 2009

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
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10 comments:

  1. Jenny StanfieldJune 26, 2009 at 5:25 AM

    I am so sorry to hear about what you're going through. For what it's worth, our neighbor boy, Jason, was diagnosed with AML on December 22, 2008. Just yesterday, he was declared OFFICIALLY IN REMISSION!!!! Jason went through 5 rounds of chemotherapy in the University of Iowa Children's Hospital. Jason was just 4 years and 1 month old when he was diagnosed.

    Jason did end up losing most of his hair, but since his last chemotherapy treatment about 4 weeks ago, it's already starting to grow back. And although his hair fell out - he never lost his spirit!

    I will be following you, and wish all the best for your family. This will be an extremly trying time, but you will persevere! =)

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  2. AnonymousJune 26, 2009 at 6:12 AM

    Dear Souza Family - I am a friend of Jessica Lilley and learned about Taylor from her. I wanted to tell you that you all are in my prayers and will be as you go through this journey. I have recently witnessed a BIG cancer miracle in my family and I know what is possible with prayer, faith and modern medicine. Since I got the word out to my prayer partners, I have heard several stories of miracles/recovery/remission and I know that you will be telling your own story one of these days. In the meantime, I will pray for whatever it is you need at this time and I will follow Taylor's progress.

    Karen DeWitt

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  3. GinaJune 26, 2009 at 6:13 AM

    Found your blog through Mom-101 and I just wanted you to know that you now have another person thinking about and praying for you. Taylor is absolutely adorable.

    ReplyDelete
  4. Tony AdamsJune 26, 2009 at 8:53 AM

    Hi Kristen and Taylor! I wish you all the best. I have been thinking and praying for you and I know that you are blessed to have so many friends pulling for you. Enjoyed seeing Gary this past weekend and we had a great time.

    I am not too literate on these computer operations, but think that this will work. Take care! Love to all of you!!

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  5. AnonymousJune 26, 2009 at 11:14 AM

    Hi Tay Tay-
    I am sorry that you are feeling yucky right now, but all of this medicine will make you better!! I think about you and your family every, single day and hope that you feel better soon. I have decided that I am going to run my first marathon for you through "Team in Training". I start training with my running group on July 6th! I will have a picture of you on my jersey when I run my race on November 8th in Santa Barbara. I have always wanted to run a marathon, but I kept putting it off. YOU, angel, are my inspiration...I am doing it for you! Hugs and Kisses!

    Love Always, Suzy Hochman

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  6. AnonymousJune 26, 2009 at 11:14 AM

    Hi,
    I was one who was having trouble leaving a comment. Hope it goes better this time.
    So sorry to hear the awful news. I'm not a big prayer, but I am praying for all of you to have the courage and determination to get thru all of this. You sound like you are doing a wonderful job and have lots of help. I am praying that all of this will end with Taylor getting well. Best tot all of you.

    Love, Ken Rule

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  7. AnonymousJune 26, 2009 at 11:43 AM

    Hi Taylor,
    My mommy told me that you are doing some art in the hospital to make you happy. It makes me happy to know you are happy. I want you to get better and leave the hospital. You are my friend and I made art for you at my preschool.
    Your friend,
    Nathan

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  8. AnonymousJune 26, 2009 at 11:51 AM

    Hi Kristen,
    I am so glad to read about your wonderful day with Savannah. I always called you "supermom"...but now I know just how "super" you are! Your strength and positive outlook are innate qualities that you possess, BUT they are really appreciated now.

    I am sending all my love to Taylor and hoping that she can handle the final few days of the chemo as well as possible. I think of your entire family ALL DAY LONG, everyday!

    Last thing...I shared Taylor's story and this blog with virtually everyone in my email address book. I received SO MANY wonderful emails in return, sending love AND sharing stories of REMISSION!
    Stay strong!
    Love,
    Laurie T

    ReplyDelete
  9. Mrs. MoralesJune 26, 2009 at 5:13 PM

    Hi Friends,

    Well, you know there are those awesome nurses, and a few loud cranky ones! And that sounds very positive about the clinical study, as we know the side affects do not affect everyone. Yes, a week can change everything, and it can happen to anyone-sounds like you are managing it very well. Thank you for the updates-we are continuing to pray for you! Always, Shauna & Gustavo

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  10. Jessica WilcoxenJune 26, 2009 at 7:27 PM

    Souza Family,

    My thoughts and prayers are with you all at this very difficult time. It's inspiring and moving to read your blog, but I have to say, I am so impressed on how well you are all holding up during such a challenging time. Stay positive and please don't hesitate to reach out to me if there is anything that you need (602-885-7770).
    In case Taylor runs out of crafts to do at the hospital, here is a website where you can print Cinderella coloring pages!!
    http://www.coloring-book.info/coloring/coloring_page.php?id=20
    Take care and god bless.
    -Jessica

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