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.

Friday, February 17, 2012

Day 31 and still counting

Alice is a trooper. She received red blood cells today. Her numbers are lingering still at 100ish. Her body really likes challenging the new marrow. Her antibodies are like steel and just need to find their exit. The steroids should help...that is the hope anyway. The question being raised is, "Can the steroids make enough difference on already existing antibodies, or is time the only medicine?" That question has been bounced around a handful of doctors...unfortunately there are a lot of unknown processes that occur in the body.

Tomorrow and the next day will be key for decision making. If there are no improvements in her counts then the steroid will be tapered immediately.

Good news, less vomiting in the past two days--still plenty, but less. Bad news, the diaper rash and pain inside her intestinal track is worsening. It will take several weeks to balance her bowels.

Alice still has no appetite, however, we order food and place it before her. Even one bite can help.



The Backyardigans have worn her out!

But don't worry they are still playing.

Just turn your head to see this picture. I wanted to remember the chaos of the IV pole. I forgot to rotate it in it's original format.
Posted by at 12:40 AM

2 comments:

  1. KelleyFebruary 18, 2012 at 8:28 PM

    Sending love to your sweetest Little. Love to you too, Lisy. I wish I were there to take care of you. Hugs.

    ReplyDelete
  2. AnnaFebruary 18, 2012 at 8:57 PM

    I'm glad that Alice has you and Backyardigans to comfort her. We've been sharing a cold at our house this week. I thought about complaining about feeling sick and having sick kids, but I thought of you and immediately started counting my blessings. Thank you for your incredible examples. We love you and think of you often.

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