The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Monday, January 9, 2012

Welcome Alice (Day -8) Congrats Natalie day 19

Big day today, Natalie's ANC is 600. Dr. Pulsipher said that if she holds above 500 for tomorrow she will be engrafted; which means I'm the winner. Sorry Tyler, maybe you will have better luck guessing on Alice. I chose today because it's my Dad's Birthday! :)
Natalie had more fevers today. More blood cultures were drawn. We hope this trend will end soon. She is now on a very low morphine dose.

The other day when it had snowed, Natalie sat in the window admiring the beauty and said, "I wish I could build a snowman". It got me thinking, so I asked her to share with me something she would wish for if she could have any wish. She said, "I wish I could go to school straight away."

Alice came skipping in the unit bright and early today. She seemed excited to be here. Tyler and I looked at each other and thought to ourselves, oh poor Alice, if she only knew.



Alice's broviac placement went well enough, meaning it took some searching and prodding to get the right vein. She looks bruised and tender. While she was sedated they ran a hearing test on her. They found some small hearing loss, however, they also discovered that she has fluid behind her ears--this may be the reason for the slight hearing loss.



Tyler and I spent most of the day running back and forth between rooms. They are across the hall from each other and can see into each other's room through the windows. The nurse let Natalie leave the room for about a minute, she wasn't feeling great but did want to got to Alice's window. It took some coaxing, we only did so because we knew she wanted to go. She put on a mask and walked over to wave at Alice and welcome her.



My cousin Heidi gave me a cute army/camo style looking purse full of survival things. She said to use it in battle. I decided today that this battle just took front line. However, the hospital still has Alice's favorite movie "Backyardigans" so we are in business. That movie will be melted before she finishes her treatments.

Lisy


Posted by at 5:25 PM

9 comments:

  1. jeriJanuary 10, 2012 at 7:39 AM

    I am so glad to hear more good news from Natalie, we had worried about her.

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  2. Robyn LamoreauxJanuary 10, 2012 at 10:34 AM

    You guys are amazing! What incredible parents you are. Your girls are inspirations to all of us. Hang in there, you are in our prayers.

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  3. Small Threads ClothingJanuary 10, 2012 at 10:52 AM

    We love you guys. The boys pray for Natalie and the family every night. We are so happy to see that Natalie is improving and pray that everything goes well with little Alice.
    Natalie, you are such a strong, beautiful girl. Your faith and courage are such an example to our family. We love you and can't wait until you can go to school and maybe even build a snowman!
    -Mandy, Derek, Dominick and Jack

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  4. Small Threads ClothingJanuary 10, 2012 at 10:56 AM

    By the way, Natalie, if you want to design something, or have an idea of something you would like on a shirt, I would love to make one for you and send it to you. Just tell me your size, tee color and what you'd like me to create and I will send you something really fun!
    My website is www.smallthreadsonline.com so you can get some ideas and my email is contact.smallthreads@gmail.com so you can give me the info on what you'd like.
    Talk to you soon.

    -mandy

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  5. MindyJanuary 10, 2012 at 11:28 AM

    Lisy, I had no idea you guys were going through all of this. We were laser tagging and bowling and Wal-mart-ing last time we saw your cute family. Jamie and Cassie told me about this blog yesterday, and I can't stop thinking of you guys,ever since I read through it. I have always admired your strength and faith, and to think your even stronger now-your such an example. I hope all goes well for all of you, and we will be praying for you.

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  6. AnnaJanuary 10, 2012 at 12:06 PM

    Wow. I can't even watch those videos without crying. You are all amazing. I'm so glad that Natalie and Alice have each other to help them through this hard time. We think about you guys all the time. I hope you understand how much we all love you and care for you. I can't help smiling that your beautiful girls are on their way to being better for good.

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  7. Heber and his "Deli" aka: AdeleJanuary 10, 2012 at 12:43 PM

    Bless you and your angels. Ohio is praying for you today.

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  8. UnknownJanuary 10, 2012 at 5:50 PM

    Congratulations Natalie, I hope you make it another day above 500. We'll keep praying for you. Be strong for your sister. You are a strong example for her.
    Loves
    Sue

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  9. Liz BorchardtJanuary 10, 2012 at 9:49 PM

    Lisy - Amie Christensen just told me about what has been going on with your family these last few months. I just read your blog and have to tell you that your family's love and strength is amazing! Your children are absolutely beautiful!
    I love this quote from Elder Hales: "I express my gratitude that "in my Gethsemane" and yours, we are not alone. He that watches over us "shall neither slumber nor sleep." His angels here and beyond the veil are "round about [us], to bear [us] up."
    My little family is praying for you.
    -Liz West Borchardt

    ReplyDelete

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