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, March 12, 2012

Counts dropped--Alice Walking

They start out nice and calm...it won't last long!

Only minutes later...this is what happens, and we are just getting started for a long night.

Natalie and Alice went to clinic today. Each time we go to clinic we have plans to visit the unit to say hello to the nurses and others we have become friends with. By the time we are done in the clinic everyone is in tears and anxious to get home....especially today.

Both Natalie and Alice's numbers dropped. Natalie's ANC is 600, Alice's ANC is 100. They are doing great otherwise. Natalie will stop taking a certain type of antibiotic (Septra) that should help elevate her numbers....and Alice on the other hand was given a nasty shot in the leg to artificially boost her numbers. No fun at the clinic today, although, Natalie was kind to the doctors and nurses. Thanks Natalie! Oh yes, I must not forget-they both had their dressings changed. The only good thing I can say about that is it's over for another week...the nurse did a great job and saved us from having to do it at home.

Good Changes:
Alice no longer needs TPN (iv nutrition)
Alice's steroid medication will taper slightly
Alice's Graft vs. Host rash has improved
Natalie's fluid level decreased by 1/3rd

Not so Good Changes:
Counts dropped for both girls
Cyclosporine medication increased for both girls

Yesterday, the life flight helicopter flew past us while we were outside and Alice noticed it. Her hospital room had the best view of the helicopter as it would land and fly away. I actually missed the hospital for a small moment when I watched the helicopter pass by. It reminded me of all the great things that have happened recently. Countless blessings and answered prayers, many new friendships, and hopes for a healthier future. Usually when I feel overwhelmed or discouraged I start looking around and notice the many good things I have--in an instant I feel gratitude; it's very difficult to be sad with a heart full of gratitude: many people have helped fill our hearts...thank you!







Posted by at 10:54 PM

4 comments:

  1. AnonymousMarch 13, 2012 at 8:30 AM

    I have pancreatic cancer and have just started my treatments. I read your blog each day and gain strength for my own battle. If your sweet girls can do it, so can I. Janis Hardy

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  2. dianeMarch 13, 2012 at 5:48 PM

    Even though you had some not so good news from the clinic visit, your videos of the kids always bring a smile to my face. I love that Matthew stowed away, and that Natalie can ride a bike and Alice is starting to walk again. I love your attitude of gratitude. You are amazing and I love you and your whole family. Thanks for continuing to share the adventure.

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  3. AnnaMarch 13, 2012 at 5:54 PM

    Wow! My kids would love that nice flat road to ride bikes on. We can't go far from our house without hitting a big hill, which Anna is too chicken to go down and Caroline complains the whole way up. And Alice is a great little walker. What great improvements you've made over just a little time. We love you!

    ReplyDelete
  4. EmilyMarch 14, 2012 at 6:35 PM

    Instead of you coming over to the unit.. I need to come to clinic so that I can see you! Text me and let me know when your next visit is and I will stop by. Miss you much!

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