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, May 6, 2014

I didn't see that coming.

Before heading up to clinic today I had thought perhaps Alice would be in need of more blood. She had complained of headaches and looked pale a couple days previous. Driving there she showed the usual excitement of going to the hospital. The possibility of her needing more blood didn't bother me so much as its been close to a month since she's needed it. The more healthy she gets the longer the stretch between transfusions. After her usual blood draws came back there was good news as well as anticipated news. The good news was Alice's ANC was at 2.3. The anticipated news was that her Hemo had dropped to 8.1. Usually that number is just above the threshold for a transfusion, but since she looked to be on a downward trend the doctors wanted to "top her off" just in case. "No problem," I thought. I had prepared for it anyway. So the orders were made and sent to find a match for transfusion. While we waited Alice played games with some of the toys, and I read. Alice's blood is a tricky match so when an hour passed by I didn't notice. However, when the third hour expired I started to wonder. Then the nurse came in and relayed news that left me picking myself up off the floor.

"We can't find a match for Alice because they've found "warm antibodies" again in Alice's blood. We need to reschedule Alice to come up Wednesday for a transfusion. We need more time to find a match." 

I could muster no more than a, "huh?" The antibody issue should have been solved through chemo. Granted, it is possible that these antibodies are new and therefore are from her donor. Then again they could still be from her body previous to transplant. Either way its news not anticipated and therefore deflated me for the rest of the day. Going back to the hospital so soon shouldn't bother me, but this time it does. Its because the worries I thought had flown to a faraway place returned, and they now will be an constant companion until we understand why the antibodies continue to be a problem for Alice. We will know more Weds. The drive home was long and the thoughts I had were not the ones I  had anticipated. 

Once again, we wan't to say thank you to all of you who continue to lift us up with your words of encouragement. It helps so much.

The footage below is of the new entry to Primary Children's Hospital. I think they did a great job. We are excited for when it is complete, they're coming down the home stretch.



  1. PCMC looks completely different! nice, needed upgrade!! I'm so sorry to hear about those darn antibodies!! UGH!! Keep your chin up...she IS progressing, She is a ROCKSTAR, just like her parents!

  2. So sorry that the antibodies are still posing a problem!!!!!! SO frustrating, I can only imagine. Your entire family is in our heart and prayers. Hope Wednesday brings some answers and some encouraging news for your little one.