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, June 11, 2013

Mondays were made for news like this

This will be short.

As the results from Alice's blood came back today at clinic I sat in the chair and watched her play with her toys. She looked normal, content and happy to be there. I really believed that this would be another short day in clinic...it would be four weeks in a row. However the reported numbers revealed an entirely different story. Her hemo was down to 7.6....and ANC dropped from 4.5 to .2. Her platelets were just high enough to hold off on a transfusion, but she is on a downward spiral. She received more IVIG today. Her downward change was so much that the doctors feel another marrow transplant is needed sooner than later. It took my breath away. Alice will be back in the hospital Thursday to receive more blood and platelets. Lisy and I will be meeting with the doctors on Monday. Alice will go through another biopsy next week. By then we will know what the doctors have in mind for a schedule.

I know this is short and there is more I could write, but I feel low tonight. Lisy does too. Will write more when we know more.

Tyler


Posted by at 10:12 PM

6 comments:

  1. AnonymousJune 12, 2013 at 8:13 AM

    You don't know me but I'm a friend of Kevin and the twins. I follow your blog continually. I've anxiously waited to hear more good news and saddened that that wasn't today. Just want to let u know my family and I will be praying. Hang in there. Alice and Natalie are lucky to have u as parents!

    ReplyDelete
  2. Jill HeapsJune 12, 2013 at 12:48 PM

    My heart is aching!!! This roller coaster ride has gone on far too long! Our prayers are with you!! Alice will be OK... We love you!

    ReplyDelete
  3. Liz and LoganJune 12, 2013 at 3:28 PM

    I was so sad to read this post this morning. Alice and your entire family will continue to be in our prayers! We sure love you guys!

    ReplyDelete
  4. CarolJune 13, 2013 at 6:37 AM

    I'm sorry that the tests didn't come out with numbers as good as they had been lately. I'm keeping you all in my thoughts and wishing I could do more than that.

    ReplyDelete
  5. The Burnah ClanJune 13, 2013 at 7:43 PM

    You guys really are strong. I've no idea how you get through all that you do (and with such little sleep! :) What a great family.

    ReplyDelete
  6. farnsworthfamilyJune 13, 2013 at 8:50 PM

    Love you guys. We will keep praying for you.

    ReplyDelete

Subscribe to: Post Comments (Atom)