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.

Saturday, February 11, 2012

Good News!

Today Alice has an ANC...it's 100!! Hooray! We hope this trends moves ahead. She could possibly engraft by Tyler's birthday--Valentines!
Alice received blood today, it will give her more energy.
Last night was a good night for her and I. We spent the entire night next to each other in her bed talking and snuggling. I counted to her all the chicken pox scars on her little bald head. Well over 100...I actually stopped counting, because I got tired. We had a lot of fun though.
It was great to be with Alice for a couple days straight-I didn't want to leave today, but knew I needed to get home to the others. Evie was happy to see me...although, I think Tyler was the most happy. The one holding down the fort at home truly has the more difficult job.
When the doctors rounded today I had several questions for them. I had been concerned about a medication. By the end of our discussion we discovered that her dose was too high and needed to be adjusted. I felt better about being there to sort out some of those issues.
I'm excited to see what her numbers will be tomorrow.
Lisy
Posted by at 4:17 PM

8 comments:

  1. The Nelson'sFebruary 12, 2012 at 2:14 AM

    Yay!!! I'm so happy to hear she now has an ANC and that you were able to spend some time with her. Now I'm just wondering when to start calling you guys Dr and Dr Fish!? They should seriously give all parents who go through as much as you have gone through an honorary degree in medicine! You guys are amazing with all you do! Keep up the great work. You will continue to be in my thoughts and prayers.

    ReplyDelete
  2. ValerieFebruary 12, 2012 at 5:37 AM

    WOW!!! I just got up and went straight to the computer to see if there were news... I'm so happy!!! I'm sure sweet little Alice will feel better real soon now that her ANC started to go up! That news really makes my day!
    Big hugs to everyone, and an especially big one for Alice!

    ReplyDelete
  3. GregandAmyFishFebruary 12, 2012 at 6:21 AM

    We are so excited for you all! Stay strong Alice!

    ReplyDelete
  4. SylviaFebruary 12, 2012 at 2:00 PM

    Lisy, I found your blog thru Facebook a couple weeks ago. I can hardly read a post without crying. You are the best mom. I think about you often and you are all in my prayers, especially your little ones. They are just so precious. Really, they are angels. Thanks for sharing your story and letting everyone who cares about you know how you're all doing. I can't wait to read about the day that Alice gets to come home! xo

    ReplyDelete
  5. MomCO3February 12, 2012 at 2:11 PM

    Lisy, I am a friend of your cousin Sarah and have been praying for your girls (+family) for a few months. I'll be following the blog to see how to pray. Blessings to you all. Annie @ momco3.wordpress.com

    ReplyDelete
  6. Mindy DahmerFebruary 12, 2012 at 9:09 PM

    Yay! Lisy, I'm so glad that Alice's ANC count is finally going up! Just wanted you to know that you and your family are in our thoughts and prayers. Ethan was just asking about Blaire the other day and wondering when he would see him again. I'm sure the time will come soon enough. I hope all continues to go well.

    ReplyDelete
  7. AnonymousFebruary 14, 2012 at 7:45 AM

    YAY!!!!!!!

    ReplyDelete
  8. AnnaFebruary 15, 2012 at 2:42 PM

    I'm glad you can cherish those moments together when you snuggle and talk.

    ReplyDelete

Subscribe to: Post Comments (Atom)