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.

Monday, August 13, 2012

Moving Forward

Day 236-Natalie, Day 209-Alice

Clinic went well today.  It was a long day as Alice received IVIG, so far she hasn't had any headaches or other unfavorable side effects of the drug.  Alice is still very puffy and swollen from the fluid retention due to the medications she is on.  Thankfully her blood pressure is stable...something we will continue to watch.  The doctors are going to speed up the tapering process of her evening steroid dose in order to manage her fluid retention.  Also she will begin taking Lasix, a medication which helps rid the body of excess fluids.

Alice's ANC was only 200.  She was given another shot of nulasta to boost her white cell production.

Natalie is doing great.  Although, she struggled today with the blood draw.  We requested the j-tip.  It numbs the skin so she can't feel the needle...still it was a challenge for her.  The vein stopped bleeding before they collected the proper amount of blood needed for testing.  She ended up getting her finger poked to collect the remaining blood.

Natalie's labs look great.  Her white count is slightly low, nothing of concern.  Good news, her B-cell chimerism is 100% donor.  Last month when they checked zero B-cells were detected.  The B-cells are the last cell line to recover from transplant so this is wonderful news.  They may not be functioning up to par yet, but they are there and this is great.  Her oxygen levels at night are still an issue, therefore they want her to do some further pulmonary testing.  Within the month she will have this testing done to indicate if there is a restrictive airway or something that might be causing her oxygen level to drop.


Alice's poor little ankles are so swollen the blue hospital band was on the loosest setting and still snug.  Alice spent most of the day in clinic eating. She had something in her mouth constantly.  It's great to be able to feed her when she says, "I'm hungry".

Trying to smile like Natalie.

I took this video of Alice and Evie a couple days ago.  They love being together most of time. ;)  They especially like to chase each other and giggle.  Evie is such a love bug.  She gives the best hugs and kisses to everyone.


  1. Congrats Natalie! X's & O's to all!

  2. That is such great news about Natalie!! I am so happy for you all. And so happy Alice finally got to celebrate a birthday at home with her family. What a blessing! We continue to pray for you.

  3. I love that cute movie of the girls hugging!!!

  4. Natalie- 100% chimerism! Yay! That is such wonderful news.

    Praying Alice's ANC goes up. So glad she was home for her birthday.

    You all remain in our thoughts and prayers.

    The Bests

  5. oh my goodness I could watch that video all day. Those two are adorable!!! Miss them and your family!