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, March 14, 2012


I'm sorry for the tardiness in the posts lately. The days are so full with tending to the girls that "old man" time somehow becomes agile enough to avoid our grasp each day. Speaking of time, I recall reading a certain book speaking on the subject. It said in various terms:

If we are eternal beings, then time is not our natural dimension. Therefore we can't help but notice its constant presence or absence. This would then further explain why the passage of time for us seems to go too slowly or too rapidly.

Makes sense to me.

Last night Alice had a hard time going to sleep, most likely because of the medication. She is off of her TPN now, and I feel it has improved her nights as we don't need to change her diaper four of five times over. Natalie however is the one who seems to be complaining more about Alice's nocturnal activities since they both sleep in the same bed. Many times it is Alice who begs Natalie to get Mom for her when she needs something throughout the night. Natalie is so good to get up with her pumps and medicine in hand, walk across the hall and tell us Alice's pump is beeping or, Alice needs a drink. Last night was no different except that there was so much going on that when we woke up, we found ourselves in different locations throughout. I ended up on the couch, Lisy was with Alice, Matthew an Natalie were in our bed, and the two youngest (Blair and Evie) managed to wake up in their own bed. I don't know how it happened, just did.

We noticed this morning that Alice felt a little warm and was a little more irritable than normal. She had no fever, but we are keeping a close watch on it as these things seem to escalate quite quickly if we allow it to. I always dread the moment when it comes to deciding whether to take the girls into the hospital or not. Its as if we do all we can to delay it; much like avoiding the inevitable school essay up until the last minute. Sometimes we get it done it time, sometimes we look back and see that we could have done a better job of it.

On a parting note: I'm not ashamed to say my conversational wit has improved since taking in a few episodes of Downton Abbey. Many thanks to you, Maggie Smith.



  1. Downton is the best! I love it. Can't wait for the 3rd Season!

  2. I do love Downton Abbey. And I agree with you about time. I think it was the great Kermit the Frog who said, "Time's fun when you're having flies."