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, April 2, 2013

Steady at 2000!!

Clinic brought good news.  Alice's ANC remained at 2000.  Alice did require red blood cells as her hemoglobin was 7.9.  Platelets were 15.  This particular blood transfusion took much longer than normal; the blood bank had a harder time finding a match for her.  The blood supply always fluctuates, sometimes they find a good match right away, and other times it takes longer.  Not sure if it means they are low on their supply and options or if Alice becomes more complicated each time, maybe both.  Usually the more transfusions one receives, the more difficult they are to match.  Antibodies are created with each new foreign invader of the body.  We know this cycle all too well.  Natalie spent five years of her life supported by blood transfusions and could never receive from the same donor twice...with each transfusion it became more challenging to find a match.

Anyway, we are happy about Alice's counts.  Her red cells could have been a littler higher, but still good things are happening.  Either way, it will be a slow process moving forward.

This week will be a pivotal week for Alice.  The doctors have taken her off Neupogen, and her main antibiotic.  We are anxious to see how much of her good counts are truly from her own making and how much is artificially created by medication.  It may take a couple weeks to know for sure what her body is doing.  This is a big week for Alice.  GO ALICE---You Can Do It!!

Natalie's cough has improved as well as her nasal congestion.  This is wonderful.  It's amazing how quickly something can improve when treated with the proper regimen.

It's Spring Break and the kids are happy to be home.  I love it too, because I don't have Matthew coming in my room to wake me bright and early.  He gets up early to do his homework...but this week I told him not to wake up so early...I'm terrible.

Although, I have made a new goal to go to bed earlier. I fall into the trap so easily of thinking that I have so much to do once the kids are sleeping; also nights are so hard because we are up with Alice often.  Regardless, early to bed, early to rise.

If anyone sees me around ask me how I am doing on my early to bed goal!  I will need some reminders and extra motivation.

Not to make an excuse but the hospital makes terrible sleepers out of people and it's so easy to become a night owl there.  The difference between nights and days isn't much. ;)


1 comment:

  1. Wow! I haven't read your blog in awhile and i have missed alot! That is great that Natalie recieved her wishes, school, no more clinics and Hawaii! I'm so happy for her!

    My heart broke as i read all that Alice and you guys have been through in the past little bit. I hope that her little body can heal.

    Please let me know if it would be helpful for me to come you guys again. My schedule is lighter and i would love to help you again. As always you guys are inmy prayers! Love you all!