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, July 30, 2013

New Developments


I have erased this first sentence a dozen times, because I can't seem to find just the right thing to say.  We had our discussion with the doctors today regarding moving forward with Alice...however, the discussion went entirely different than we had imagined.  We anticipated them telling us that we should begin to prepare for transplant.  Although the contrary happened.

Certain developments have come to fruition.  Dr. Cowan at UCSF has provided us with some very important information; through some testing they have discovered that Alice likely now has HLH (Hemophagocytic Lymphohistiocytosis) in conjunction with her already existing SCID.  This isn't good news for her.  It does provide more answers to why she is doing so poorly keeping her blood lines up.  If in fact she has this, the doctors feel it was brought on by the processes of the chemo drugs, and many other factors dealing with transplant.  It would be considered Secondary HLH.   There will be further testing to confirm this.  

Maybe I shouldn't post about this until we have more information.  There is much for us to learn still.  I won't take the time to explain what HLH is and what it means for Alice, at this point.  I will do this in another post if and when it's certain that she has it.  The interesting part of all this, it that ironically the way HLH is treated and cured is already what is in plan for Alice. 

It is a very good thing we did not proceed into transplant earlier.  The doctors will first manage/control the HLH with steroids before she has a second transplant, this is pertinent. 

Dr. Boyer said, "Alice's situation continues to become more complex"; we said, "Is that possible?" How can it be more complex?  While driving home, Tyler and I discussed this new information, we feel that it is one step closer to where we need to go.  It's bad news, but it's news and now there are more pieces to the puzzle.  

The truth is...we are so blessed that Alice keeps pushing along.  Knowing all this information and what her body is really doing...it's a huge blessing that she is as well as she is, and happy all the while.

Okay, I have a feeling that this post makes little sense.  My mind is scattered and tired, so I will post later, and hopefully it will be more clear.

Today Alice received platelets.

Counts:
ANC 1200
Hemoglobin 8.9
Platelets 3 (after the infusion her platelets rose to 53)

Lisy


Dad writing in his journal and Alice playing mommy

Another favorite book of Alice's..."The Queen of France", she has me read it to her daily.  The cutest book ever. 

Dad went to the cafeteria and brought this back...she was so excited!

Super Alice!!




3 comments:

  1. Answers are coming! I am so happy you have gone with your inspiration and "dragged" your feet when it has come to doing another transplant! Little Alice is going to get the treatment she needs!!! We are praying for you!!!

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  2. Lisy, I'm so sorry to hear they think Alice has HLH. I've been following the girls for a long time.

    I am very familiar with this disease and do fundraisers and network with families regularly. Please email me at augie.grabenstein@gmail.com so that I can offer my resources. (I'm typing from my phone right now)

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  3. so sorry for the kid,let everything be fine soon..hoping for the best

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