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, June 28, 2012

Alice comes home today - Headaches

On Tuesday the 26th, Alice went into clinic for a check-up because she wasn't feeling well...they told us to call if she became more ill.  At 2:00 am she ran a temperature and was extremely fussy.  Her head was hurting and her legs.  She was warm and thirsty.  We called the on-call doctor and they said to bring her in; so Tyler took her back to the hospital....we had been there already two different times that day, however, we didn't want to take any chances.

She only stayed until today...two nights total.  Last night she was so miserable (headaches and body pain)...didn't fall asleep until 3:45 a.m.  I rubbed her back and legs and scratched her head for hours.

We began to wonder if maybe the infusion of IVIG she received in clinic on Monday was a bad batch for Alice.  IVIG can cause headaches for several days following an infusion, not super common but happens.  She has been very uncomfortable.  They gave her some pain killers and it helped.

The fever she had which brought her in at 2:00 a.m. could have been from the Nulasta.  Her white count jumped up quickly therefore causing a combustion of cells, which can create fevers.  Nulasta can cause a lot of aches and pains in the bones.  Thus the leg pain.

Now----we are all home again!  And it's GREAT!

There is talk that Alice might be able to have her line removed in the next few weeks.  Natalie will need to drink better throughout the day before they remove her line.  That ought to be plenty of motivation for her to drink more.


                           Getting ready to go home...but the baby has to stay, she's not ours.
                                             We keep the pink bucket close at all times.

                              And when that pink bucket walks away the garbage can will have to do.

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