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, December 21, 2011

Marrow For Natalie--Transplant

This morning for Natalie started out where the doctors had left off last night. After repairing the broviac line for the fourth time unsuccessfully they decided to remove the existing line and replace it with a new one. Which meant Natalie had to go back to the OR. Natalie had nothing good to say when she figured out what was going to happen. While she was getting her new line, Blair was donating his marrow. When I first saw him in the recovery room he had not woken up yet and looked very comfortable bundled up in warm blankets. As I looked at him, I couldn't resist the proud feeling of knowing that he willingly put himself in harms way to help his sister. You are a hero Blair, and we will throw you a hero's party when this is all over.

It was perfect timing; when we were wheeling Blair out of recovery we ran into Natalie and Lisy as they were taking her back to the room. We put Blair up on the same bed wheeled both together. As I watched them both on the bed, looking like they had both been through so much; fatigued and sore from the abrasive procedures. Natalie now has two holes in her chest and Blair having over 60 needle "pokes" between both hips. So proud of their willingness to make it happen.



At close to 5pm the whole floor of nurses and doctors gathered in her room to sing "Happy Bone Marrow Transplant Birthday" to Natalie, to a new life. I was so happy, this day has been over 6 years in the making. It really is a new day for Natalie, the beginning of the end of chronic illness and worry. When the nurse hung the bag of marrow I watched it flow ever so slowly down the tube and into Natalie's chest. She wasn't as excited as I was, but I didn't care. I felt very much like the lightness you feel after finals week is over. She has one more bag of marrow to receive tonight around 10pm and then it will be finished.



The next few weeks will be tough on her as her body's blood counts will drop due to the chemo and low energy will ensue. Her existing hair will be a thing of the past and replaced with mouth sores. The doctors will be monitoring her lung closely. No doubt it will be the toughest three weeks for her, but she's tough. It is after all, not her first day on the job.

Tyler

10 comments:

  1. We are praying for you Natalie. Keslee asks me each day what is new with you and how you are doing. We are so grateful to Blair for helping you! What an amazing brother!

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  2. We are praying for your entire family! Natalie and Blair, you are both so brave.

    Love,
    The Bests
    Danni, Kevin, Mack, Eli and Rory

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  3. Hooray for Super Blair! You really do deserve a hero party! ...All you Fishes do! You are all heroes to me and so many others. Hang in there Natalie! I am so proud of you for being so tough through all this. We'll keep the prayers coming. Love you all- Sis. Strong

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  4. We're rooting for all of you! Love,
    Carl Brewer & Family

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  5. Yay for all the Fish "heros" You all are heros to me. Hang in there. We're all cheering for you.

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  6. You guys are all amazing. I love Blair and Natalie so much. We are thinking about you all the time.

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  7. I've been reading back over your blog...I am a friend of Tylers sister, Heather, from high school (my maiden name is Nield). We are so touched by your story, your faith, your courage. I just wanted you to know that we are sending many prayers up on behalf of your whole family. My children ask often to see how cute Natalie is doing...we have 8 year old twins. You are a hero to them Natalie. You are so brave. We will continue to keep you in our thoughts and prayers.

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  8. Every one of you deserves a hero party!

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  9. Amen Jeri. I am so in awe of your entire family.I keep trying to imagine Ben doing what Blair has done for his sister, or my little princess Emma enduring what Natalie has and it is so hard to imagine. Merry Christmas to you all.

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