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.

Thursday, January 17, 2013

Last Round -- Happy Transplant Birthday Alice

Yesterday (Wednesday) was Alice's final round of Rituxan.  She did well, and now we just wait and watch.  It will take several months before we can measure the successes of this treatment.  It can take up to two years to learn if her body will recover from the treatment as well.   We hope eventually she will recover her B cells.  In the meantime she will be supplemented with IVIG, donated antibodies, which are made from B cells.

Alice no longer needs her daily antibiotic (Cephalexin), her IV anti-fungal (Caspo), and the IV anti-viral (Gangcyclovir).  She remains now with only one IV medication.  Life will be a bit simpler now, in this regard :)

Clinic was long for us yesterday.  Natalie had buckets of labs, they drew more than the allowed amount (with a doctor's approval)...all in one poke, we were very happy it went so smooth.  Natalie was brave enough.  She had a three hour long Psychology evaluation, she was a good sport, her Psychologist was awesome.  At one point we called a break to feed her.  She skipped breakfast, she was too upset about going to the clinic, she gave A LOT of blood, and she seemed weak.  Once she ate something and had a drink, she seemed more alert and ready to finish the testing; after which she headed over to audiology for a hearing test.  Partly into the testing she was too sleepy and tired to continue.  No big deal--we rescheduled.

Unfortunately we discovered in the pre-phase of the audiology testing that Natalie's right ear drum has not yet healed from the tube.  They will give the ear another three months to heal...if it doesn't she will require a surgery of patch work to close the hole in her ear drum.  We will hope for the best.  It is hard for us to see all that she has been through and wonder how much more she must experience.

Tyler and I came home exhausted.  Alice was upset when we arrived home, she wanted to stay longer and Natalie was so happy to be home.  Funny girls!

Today is Alice's One Year Transplant Birthday!!  Jan. 17th

Happy day for Alice...she and I took a long afternoon nap together.  I believe that was the best thing that happened today.  Later we took all the children to visit Uncle Justin and Aunt Jeanette in Mapleton to explore the snow cave system they created in their back yard.  It was awesome!  Everybody except Evie liked it, surprisingly; Evie is such a snow bunny, maybe the tight space was scary for her.

We hope to make contact with Alice's donor.  If her donor consents to exchange information...we look forward to personally thanking her for giving life to Alice.  We will always remember the selfless act of giving by Alice's donor each and every day---Much gratitude to be expressed.


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