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, March 12, 2013

Blood/Platelets for Alice/Fevers for Natalie

Yesterday Alice and I spent the day in clinic.  We knew she was in need of blood and platelets, we didn't realize just how badly she needed them.  The doctors were equally if not more surprised than us.  Her hemoglobin was 5.3 and her platelets were 3.  Normal range for a hemoglobin is 11.5-13.5.  Normal range for platelets are 150-400.

Her ANC remains at 200.  This doesn't say much considering she receives Neupogen every day.

After a long day in clinic she received both infusions with little problems.  We are not sure how long before she needs more.  Currently she is requiring a transfusion of some sort weekly.  The hope is that her body will gradually manage to go longer between infusions.

Alice remains cheerful and happy...we are praying that the right decisions will be made at the right times, especially in the upcoming months.

Natalie has been having fevers on and off for the past week plus.  Nothing has come of the fevers yet, other than Matthew had similar symptoms and became well.  We assume it is a virus of sorts...and that her body just needs more time to push it out.  Her asthma has been a great challenge, yet we continue work at it.  Surly this winter air quality has been hard for her.

We are being better with Natalie's no gluten diet.  It has been a real bugger for us.  However, she seems to feel much better when she follows a gluten free diet.

Apparently the doctors stated that Alice's recent scope indicated only GVHD and no Celiac.  They did confirm that Natalie's scope appeared to be very different than Alice's despite the GVHD.  This tells us that it just may be true that Natalie has Celiac.  I suppose Tyler and I were trying to find all the reasons to believe that Natalie does not have it.  Who wants Celiac???

Being able to accept it rather than deny it has truly made it easier to deal with; and as I have said before, it can be a blessing in disguise as it forces us to eat healthier.

The past couple weeks I have had a terrible headache/cold.  I wonder if stress and lack of sleep might be contributing? ;)  By mid-morning I told Tyler that I was going downstairs to sleep and didn't know when I would return.  I have so much on my mind lately, however, I'm having a hard time thinking through it all.  Before I fell asleep I took a notebook and pen and wrote everything down that has been weighing on my mind from the little things to the large things.  Sadly my list was long.  I then fell asleep.  Three hours later I woke (minus a few calls from the doctors periodically) remembering my dreams.  I had a series of random dreams using all the information I had written in my notebook.  Upon awakening my mind felt 20 lbs. lighter.  I suppose that is one way to clean your cognitive mind.  Of course the things on my list have not resolved, yet some of the unnecessary stress has.  The brain has an interesting way of dumping information/clutter.  I was thankful for Tyler in giving me that time...he is great!

We are so happy, Alice has been home a week.  According to her status...everyday at home is a blessing.  She is happy nearly all the time.  When she has a meltdown she seems to rebound quickly.

Well I could write more, but I'll save it for later...we are happy to be together and hope it continues on....


Natalie was desperate for a huge box.  I went to Lowe's hoping to find something...luckily I did. I was determined to fit it into the car.  The lady at Lowe's must have thought it wasn't going to fit.  However, she under estimated my will power...I wasn't about to burst Natalie's hopes of a giant box I promised to well as my own sanity in listening to her disappointment.  Sometimes Moms seemed a little weird to me as a kid...I get it now!  :)

What a lucky day...we found a PINK wagon to play in while we waited for our blood and platelets to infuse. Such a simple thing goes a long way.

Alice can entertain herself well!

Another great past-time.


  1. Keeping you all in my thoughts. I'm glad that you had time to write down the list of things weighing on your mind. It's too much to carry. I haven't been diagnosed with celiac, because I got rid of gluten a long time ago in order to feel better. I'm not willing to go back on gluten just to get tested. Feeling better is good enough evidence for me. It was hard for me to change my diet, but now I can't imagine eating any other way. It's got to be more challenging for you since most members of your family can eat gluten. If I lived close by, I would drop off some of my gluten-free baking for Natalie! I'm happy that your family is getting to be together at home.

  2. Dear Lisy~

    My name is Janet Rowley and I am Liz Jorgensen's mother as well as grandmother to little Eli. I had the great fortune of meeting you at the hospital. In the few moments that we spoke I was very aware of your courage, faith, and dignity in the face of daunting trials. I was most impressed by your gracious kindness and good cheer! Your light emanates from you and is inspiring. Thank you for sharing your story and the story of your magnificent family. It has blessed my life and the lives of those I love who are beginning a rather similar journey. The Fish family will remain in my thoughts and prayers.