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.

Wednesday, February 29, 2012

BIG NEWS!

Before I get to The Big News, here is the update. Alice's ANC came up to 1000. She is getting stronger. Her rash looks better. It is confirmed to be Graft vs. Host. Because it occurred very early, it shouldn't be a problem. The rash is being well managed. It will just take a little time for all her cells to learn how to play nicely together, when they learn to like each other the graft vs. host should disappear.

Natalie came to clinic today and visited with Alice. The two had a blast together. Natalie's numbers are wonderful. The doctors decided that she will no longer need her a.m. dose of the anti-viral infusion. She also will no longer need her anti-fungal medication. One more medication off the list, this is good! Hooray Natalie!

The Big Good News is that Evie is all clear, she does not have Leaky SCID! What a relief. We had assumed so, being that she has been so healthy. However, a couple months ago there was some miss communication between doctors and departments, and we were under the impression that she had the disease. About three days had past until things were clarified between doctors...in the meantime Tyler and I were trying to prepare ourselves for a third transplant. I can't lie, that was a really hard couple days for us. We kept it quiet to ensure that the information we received was valid. When we discovered that the results actually had not returned it was a huge sigh of relief, even though we still anticipated the final verdict.


Little Evie Karen...excited for the big news. If only she really knew how big it is.


Posted by at 12:27 PM

11 comments:

  1. Shawna WilsonFebruary 29, 2012 at 10:55 PM

    She is so cute! I am so so glad she is doing well after that scare last week. Her muffin makes me think of her saying, Mom bite my muffin! hahahaha... I hope you guys get to head home soon! YAY!!!!!!!

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  2. AnonymousMarch 1, 2012 at 6:22 AM

    Her laugh is so infectious. The entire minute and thirty seconds she was laughing in this clip, I was doing the same with her. Thank you for sharing, as always! Hooray for continued progress, and of course, for Evie's big news!

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  3. jeriMarch 1, 2012 at 8:55 AM

    I can't imagine the relief for your family - amazing!

    Alice's smile lights up my whole day.

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  4. StrongsMarch 1, 2012 at 9:15 AM

    I feel like I am going to burst with happiness! So much good news this past week for your family! We have to watch one of Alice's laughing videos atleast once a day here for a pick me up. We all laugh along...o.k, I cry and laugh. She looks so well, and we are so incredibly happy for all of you! We'll just keep praying! Love you guys- Rebecca

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  5. AnnaMarch 1, 2012 at 11:53 AM

    Alice has the cutest laugh I've ever heard. I'm so glad for all of your good news. How wonderful that all three of the girls are healthy or on the right track to being healthy!

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  6. KelleyMarch 1, 2012 at 12:24 PM

    Our hearts are overflowing with happiness for you all! Xoxoxo

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  7. KimberlyMarch 1, 2012 at 12:33 PM

    What a blessed relief!! So very happy for all of the great news! What a beautiful laugh! Love to you all! :)

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  8. Jill HeapsMarch 1, 2012 at 2:05 PM

    I am so happy for you! What a blessing to have your girls healing and to have Evie CLEAR!! Happy days!!

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  9. jfishmagMarch 1, 2012 at 2:45 PM

    Lisy you better not bite that muffin, it is Alice's! I am glad you guys are having such a great day! Keep giggling Alice! I am so glad Evie is healthy.

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  10. TaraMarch 1, 2012 at 5:00 PM

    We are so excited about your good news! What a relief that must be! She is such a sweet baby. We continue to pray for you. Keep us posted as to when she gets to go home. We can't wait to hear!

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  11. NatalieMarch 3, 2012 at 1:18 PM

    I am a faithful reader of your blog, but never comment. BUT, this post made my day--what an infectious giggle. Your story, faith, and courage strengthen me daily.
    WIth total admiration,
    Natalie (Greenwood) Jensen

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