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, July 18, 2012

Clinic Visit Leads to Admit

Alice came to clinic today for a follow-up from our crazy day Monday (two posts earlier will preface this post). She is still having large volumes of diarrhea. Her tummy is hurting, luckily not constantly. Half way through the day the doctors said we were finished and could leave with instructions to keep her on a clear liquid diet to see how her stomach manages. Just before leaving the clinic she had another giant diaper which was concerning to the it resembled what might appear as Graft vs. Host disease. GVH can only be determined by a biopsy of the intestine. The doctors have scheduled her for a colonoscopy on Friday.  Therefore, Alice will stay in the hospital until we have some solid answers. 

Her hemoglobin went from a 7.1 to a 7.9. This is great--she may not need a blood transfusion.

If she has GVH it would be considered acute rather than chronic due to her symptoms. Acute is easier to get a handle on. Alice is on day 183. Originally GVH within the first 100 days was considered acute, after 100 days it was considered chronic. The idea behind this has changed and is now based on an individual symptom basis. GVH can present itself through the skin, gut or liver...or all of the above. Alice's would be gut.

With graft vs. host disease in the gut, the body attacks all the absorbing villas in the stomach and intestine so the body is inflamed and unable to absorb fluids and nutrients. The fluid naturally created by the stomach has no where to turn contributes to the large volumes of liquid stool. Alice is on a clear liquid diet for the next few days to determine if she still produces large volumes. Hopefully by not eating anything she will slow down the process and prove that she truly does not have GVH.

I have wondered if she is following the same pattern we saw in Natalie when she was suspected of GVH, which in turn was unofficially determined as intolerance to gluten.

Regardless the biopsy will be the only true indicator and will be obvious between the two scenarios. If she has GVH she will be placed on a higher dose of her anti rejection medication and possibly some added medications.

The doctors feel that if she has GVH it could be a result of a rapid taper as her body's chimerism was falling and the only choice was to speed up her taper.

Next week her current chimerism test should be reported, which will be helpful.

Alice's immediate challenge is going without solid food. She is hungry and growing impatient. I wish I could take away her hunger pains. If Alice's situation does not improve within four days she will be placed on TPN for nutrition.

Many things come and many things go...we are feeling better about Natalie's new gluten free diet and realizing that it is a blessing in disguise as we are eating healthier and becoming more aware of what is really in the food we eat. Each new challenge that comes and sometimes goes has made us more knowledgeable and prepared for the next obstacle around the corner.

The idea of praying for your trials to go away is silly, possibly immature...rather we are praying for extra strength to manage the trials that come, including prayers for a small bit of time between them...even be it a day...just enough time so we can find our feet on the ground again.

Tyler and I made an awesome schedule for our family during this time of quarantine. It included exercise, schooling for the children, discovery time, games, etc. Sadly, we admit that our schedule has many loop holes and disclaimers. We feel it a privilege when followed as it indicates that life has some rhythm. We decided that flexibility is our motto...and sanity is a perk. ;)

Part two off this post will come tomorrow...I need to go to bed.

Thanks again to all for your prayers.


 Buying time with the Care Bears play set.  I love the toys at the's like the toys in nursery--old school, the kind I remember playing with.

            She is telling me that her tummy hurts...aka a grand movement approaching.

The result of those grand movements....double diaper duty.  Enjoying our room in ICS--a bit more comfortabel than the clinic.


  1. "The idea of praying for your trials to go away is silly, possibly immature..." Truly a profound statement. Our family continues to pray for yours daily. You all amaze me. :)

  2. Man guys are ROCKS! You continue to stay so positive and upbeat through all of these trials. You are all such great examples, and you make me want to live my life better.