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 20, 2013

A Peek Into Our Hearts

Monday at clinic the doctors brought some good news and followed it with some not so good news. Alice's ANC was at 600. That is fantastic, it hasn't been that high in months. However, her other numbers were so low she required three transfusions: blood, platelets and IVIG. Normally the ANC count would seem to trump the news, but the doctors are in doubt because she is still requiring the other transfusions. If she continues an upward trend in ANC perhaps the other numbers will come up too. However the doctors are still prepping for a transplant that they feel would happen no later than May.

As the doctors have said earlier they have a donor being tested and prepared.  This donor is male, in his 20's and a perfect 10 out of 10 match.  Unless Alice's body shows some very promising results the doctors feel that six weeks to two months is the longest they wish to allow Alice to wait for a second transplant.

We have become more and more nervous with regard to the transplant. Strangely enough the majority of our nerves have not been on the success thereof, but more so on how the experience could change Alice's personality. We would never be concerned with this aspect if We had not seen it happen with Natalie in 2009 after her bout with the H1N1 virus. Natalie came home from that stay a different person. She is still no doubt sweet as can be. But she came home tired and her patience lost on anything to do with hospital visits. It bled over into other situations such as learning and continuing to be so outgoing as she once used to be. We see glimpses of her old self at times, and believe in time she will be back but we worry for Alice to face similar challenges. we worry for her to face the bitter fruit of chemo again. The mouth sores and the excruciating pain of cleaning her mouth several times daily with the mouthwash. We worry of the pain she will feel when she wretches each morning. We worry for her because we will no doubt feel so helpless at times and all we can do is be there for her and hold her in our arms. We also worry for the doctors who we know are at this moment configuring a chemo regimen they hope will suite her current status and future needs. We worry for our other children who have so patiently helped us; and in so doing taken a back seat sometimes to our focus. I worry that the decisions Lisy and I will make as parents will be the right ones that will lead our family to safer grounds emotionally and physically.

Our days are filled with incomplete thoughts as we struggle to finish a thought or task due to mental and emotional exhaustion.  Lisy continues to lean on me for support as I her.

Our thoughts continue to turn to the reassurance that somehow we know everything will be okay.  It will, no matter what happens.

Natalie continues to have fevers and more seizures.  We have more appointments this week with Pulmonology and Immunology, and later Neurology we should learn more of what she is dealing with.  In the meantime she has been on antibiotics.

Next week Natalie will find out if her wish has been granted through Make A Wish.  She can hardly wait, she is so excited.  More news to come.



  1. My heart is going out to you! a 2nd transplant is so know EXACTLY whats coming! You guys have been so faithful...the Lord will guide you and direct you; sending angels your way to help every single person in your family. We love you!!! You are ALWAYS in our prayers!

  2. I wonder what words are useful for me to write to you and your family since I've never met you. But I've been reading your blog for sometime now, and I am always struck by the love and commitment you have for your children. That, it seems, is what a parent is "supposed to do", yet so many of us have limitations in our abilities to love and nurture. You, with all of the tests and challenges that come your way, continue to do what's asked of you, and you do it so beautifully. I'm not sure I've seen greater love. AND I know that this is all very taxing. I think of you often, and I send prayers for all that you need on this healing journey.