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 23, 2012

A good Day

Natalie awoke this morning to the doctor delivering news we have been so anxious to hear. "You are going home today." Her excitement was visible as she jumped onto my lap giving me a big hug. The rest of the day was filled with cleaning up her room. As I took down the posted get well emails and pictures, I couldn't help but feel gratitude to all of you who have helped our Natalie through this first stage of her recovery. She left the hospital with her ANC count at 1100 and feeling good. The doctors and nurses gathered together and sent her off with cheers. Now she begins her 100 days of quarantine.


Today Alice was showing the effects of chemo as she vomited much of the day. The doctors confirm that her mouth sores are starting to show in the back of her throat. She is however, still playful when she isn't holding the bucket to throw up. They will start her on more pain medicine tonight to help her sleep.





We get a emotional when we think of all those who have donated and will donate their blood on behalf of both our girls. Oh, how we are so thankful for your courage to do so. In addition, we on occasion will hear second hand how there are those of you who are selflessly working behind the scenes on our behalf. I wish there were words to express how thankful we are.
Tyler


Post from Home by Lisy:
It was fun to come home to snow--beautiful! Natalie was excited to arrive. Some of the first things she did was look in the pantry and fridge. Earlier this week she said, "I just want to go home and make myself some toast." She drank three glasses of milk. Natalie thinks that everything tastes better at home. I guess I can't argue that when comparing it to hospital cafeteria food. Next she looked around the house with a little smirk on her face because she was so happy. She lied down in her bed, played sleeping queens with Matthew and Blair, and finally at midnight fell asleep. The three of them were so happy to be together that they played and played and I didn't have the heart to interupt them.
Intermountain Homecare had brought a delivery and Blair told the man that he better sanitize his hands before he comes in. There is a large bottle of sanitizer by the front door. Blair followed him with the bottle until he sanitized. Then when the nurse came he did the same thing. He said, "Everyone that comes to our house has to wash their hands." I thought that was so cute.
We will be busy administering plenty of meds around the clock for Natalie. However, with that said she has come home with fewer medicines than the average patient. She has done so well. The doctors have said many times that she is recovering wonderfully. They did say that she had one of the worst cases of mouth sores....we figured so ;)







9 comments:

  1. Congrats Natalie on going home, and good luck to little Alice. I am sure Natalie feels good to be back home and in her own bed. I hope Alice gets over her mouth sores quick. I cant imagine being so young and going through what your girls have been going thru. I am sure the road ahead is going to be new and crazy while getting used to it, but just remember we are all here praying and fasting for your cute amazing girls and family. I hope Alice gets hope soon also, so your family can be under one roof again. You guys are all in our thoughts and prayers.

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  2. Fantastic news that Natalie has been allowed home. Before you know it you will have Alice home as well!

    Let Blair know what a fantastic job he is doing with the sanitizer.

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  3. Love you Natalie! You are our hero!

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  4. Congratulations! I am so happy for you Natalie!! Have a fantastic time at home!! Hopefully Alice will be joining you very soon. I don't know if you take your meds in pill form but it is SO much easier! Then you don't have all the yucky tastes! Have a great first snowy day at home :)

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  5. Yay for Natalie going home!!! Love and prayers for Alice so she can join you soon (she looks miserable in her pic, it breaks my heart) and I love Blair and the hand sanitizier. It makes me want to wash my hands right now and I'm not even there!

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  6. Hi! This is Mrs. Bromley, Natalie's teacher. I am so glad to see she is doing so well!!!! It almost made me cry. Congrats to you guys for being so strong during all of this! Tell Natalie that I miss her so much, and our class has notes for her, and we can't wait till we get to skype with her! Welcome home Natalie!!!! Let me know how I can help in any way!

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  7. Hey, this is Madalyn H's mom, I've been following your blog to keep updated and I'm so excited that Natalie is doing so well! We are all praying for your family!

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  8. Hip hip hooray! Natalie is home! We are all so happy for you Natalie! We will keep praying for you as your body continues to grow stronger and healthier. I feel sorry for the hospital workers; I'll bet they will miss you terribly.
    We love you! -The Strongs

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