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.

Tuesday, June 26, 2012

Natalie is Home

This morning Tyler wrapped things up quickly at the hospital and came home with Natalie, just in time to turn around with Alice and take her to the hospital.  Alice woke this morning with a mild fever, and fussiness.  The doctors wanted to see Alice to ensure that she was okay.  They gave her a one time dose of antibiotic and checked her ears, nose and throat.  Some hours later Tyler returned with Alice.  Oh, how lovely it is to have everybody under one roof!  We hope to never take for granite the sweetness of being together.

Natalie felt terrible late afternoon, so I asked what she had eaten...she ate a pumpkin cookie and a string cheese.  She said that Matthew assured her that the cookie didn't have gluten in it.  I asked Matthew if he knew what gluten was and of course he had a limited understanding.  I suggested to Natalie not to take advice from the boys when it comes to her diet.  She agreed....and I can't blame her for listening to him, as Matthew is very informational and persuasive.  

Natalie wasn't able to eat anything the rest of the day because her tummy was in so much pain, until at one point she vomited and was then feeling better.  She had a plate full of watermelon before bed and was satisfied.

Her digestive system is very sensitive right now and needs a little break, so until she is stronger we will keep a close watch on her food intake.

Tyler and I were talking with the home care nurse this evening and she mentioned that Alice seemed more emotional than usual.  We have been thinking the same thing for the past couple weeks.  I thought about it for a moment then it dawned on me that she has been this way since she was taken off the steroid medication.  Of course, I should have known...after almost 7 years of having this medication be a large part of our life I should have recognized the pattern.  Hopefully in the next couple weeks her body will find the proper hormonal balance again.  Even with a careful tapper process from the steroid, the emotional roller coaster is still apparent.

Despite the challenges that each medication brings, we are thankful for the healing that our girls have accomplished.  The list of medications is minimal at this point--in fact Natalie will be finished with her anti-rejection medication in one week.  Big milestone!!  In the event that her body begins to reject, she will be placed back on the medication (cyclosporine).  We are hopeful she will do well.


                                                                  It's great to be home!


  1. Isn't it crazy how much the meds affect not only health but emotions and EVERYTHING around us?! I hope things calm down for you guys soon and that you are hospital free for a while! Congrats on bringing Natalie home!!

  2. Horray that everyone is home again! Love you all.