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, September 4, 2012

Time and Hope

Clinic was fairly slick today.  I think it may have been our shortest day ever in clinic...only Alice was required to go.  Natalie was more than happy to remain home.  Alice did not require any infusions today.  She did however need another booster shot of Nulasta.  Her ANC is again low at 200.  She will begin another tapering step with the steroid.  Hopefully as she slowly comes off the immune suppressants her body will be able to make more white cells.

After speaking with the doctors, I realized once again that Time is Alice's greatest tool.  Alice's body has come a long way and has made huge improvements thus far, yet unwanted cells (her original plasma cells) still linger and cause trouble.  Over time these unwanted cells will have to part their ways and we should see the new marrow begin to preform as it should under a less hostile environment.

When this will happen is unsure and less predictable.  The concept of Time is relative...which it seems to always be that way with anything in life, however, in Alice's situation I sometimes wish it were definite.  I would love to know exactly how long it will take her body to fully accept the new marrow as her own and ensure that it will be 100% successful.  I suppose we need to pave our path with patience in order to become friends with time.

In the meantime, we will continue to look upward and recognize each step of improvement along the way...for there are many.

We have a great deal of hope, which we cannot take credit for, because of others coming to our rescue.

Some weeks ago Tyler and I discussed hope.  What is it?  How is it understood?

We tried to define it according to our experience...this is the best we knew how.
    "One might resist to hope, for they fear disappointment.  If so, this is not's cheating yourself of what is already true.  Yet what needs to be learned is that hope is the gate that opens our faith to believe without fear or doubt that what we righteously desire will become our possession."

We feel like hope has been the beginnings of our faith in this journey we travel with the girls.  Hope is given sometimes...and for us it has been received....people are innately good.


My friend Allyson called me yesterday to see if I had plans to attend the up coming Zumba Fest this Saturday.  I am...I have been looking forward to it.  I have to admit, I've never done may be more of a comic show for others.  Natalie was very disappointed that she couldn't go to the recent Fish 5k so I promised her I would take her to the Zumba party.  She loves to exercise.  We are excited for a fun evening.    Thank you to everyone who has been working hard to put this together.


  1. Lisy,

    Thanks so much for sharing your insight on hope. I have written it to remember and I will quote it often. You are a wonderful example of strength.

    Love ya,

  2. You two are so insightful. Such good examples to ALL of us!