Wednesday, June 15, 2011

June 15, 2011 - Day #11

More victories today. Riker is off oxygen and has been released from the PICU. We now have a bigger room with a bed for me to sleep in and a shower for me to wash in. The view is nice, the room is bright, and there is plenty of room for me to bring some of Riker's things and make it feel like home.
I also got to take Riker for a walk outside. The nurse laid her in a Radio Flyer wagon and I wheeled her through the hospital and out the door. It was wonderful - and it was awful. It was the first piece of real life that her and I have had together since her diagnosis and I couldn't help but wonder if it was our last. Each day is a gift now but it's difficult to appreciate it when all you can do is think about losing your baby.
After about 36 hours and a move upstairs, I needed to head home for Valentine. The guilt of leaving my baby alone in that hospital is tearing me apart. The guilt of leaving my other baby at home is tearing me apart just as badly. I don't want to miss a single thing in either of their lives. I always want to be here when they wake up crying and need me to kiss away their tears.
Today was another victory but it is bittersweet. I just want both my babies home with me... I just want my life and family back :(

7 comments:

  1. Hi there,

    I don't know y'all but just found your blog and am praying for you and your beautiful daughter. I can't do much but know that you are in my husbands and my thoughts and more importantly, prayers.

    Allison & Andrew

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  2. Hi,sometimes it is so hard to find words to say at a time like this. This is very sad. My heart goes out to you all. Praying for you... Your little girl is beautiful...

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  3. I know Tory Blue, I know. We love you guys so much, very painful journey.

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  4. My sister's daughter Lara(6) was diagnosed with Acute biphenotypic leukemia. A rare form of leukemia that has myeloid and lymphoid features.
    Nobody thought she would make it.

    She had tough times and very heavy treatments at UCSF Medical Center in San Francisco. And bone marrow transplant in January 2009.
    Lara is now 9 years old. Right now she is enjoying her summer vacation with her sister and her family in Turkey.

    What i want to say is not going to be easy. But there is a hope. Stay positive, strong, good take care of yourself(this is very important!) and let people help you.
    if you want to know more about Lara's story www(dot)caringbridge(dot)org/visit/laraakmehmet/journal
    I'll be praying for little Riker and her family. And I'll be fallowing your journey!

    Our thoughts and prayers and with you.
    Love from Holland (the Netherlands)

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  5. You do not have to carry this burden alone or leave Riker to simply the care of the wonderful staff at MMC. I would love to be there when you are not and I am sure others would love to also. There is no reason Riker has to be alone there. Please allow your family to share in this^j^

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  6. You are the bestest Mumma Tory girl <3

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  7. Tory,

    You don't know me, but i work in your building. Your story has been spreading thru work, and you and your family has been in the thoughts and prayers of many people at work.

    Riker seems like a strong little girl, and she will thrive off your positive outlook. Your smiles and postive attitude will cause that little girl to smile.

    Keep your head up even though it might be hard to do, your in the thoughts and prayers of many out there and we look forward to reading more updates on the situations, and all hope for the best for you, your family, and especially little Riker.

    Thank you and take care of yourself!

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