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, December 5, 2011

Small Delay

Today's visit to the hospital was met with delay for Natalie's procedure.  At 8:30am Natalie received her scheduled CT scan of her lungs to see if they were in fact healthy enough to proceed with the process of a bone barrow transplant.  After review of the scans doctors found possible lesions on her right lower lung due to chronic infections.  Therefore, before Natalie proceeds any further, the doctors will need to run more tests to see if these legions are in fact scar tissue from previous sickness or fungi that would need to be dealt with before chemotherapy.  If it is in fact scar tissue, the doctors would then put her back on track to be admitted by the middle of next week.

We will be back up at the hospital tomorrow however to proceed with the Broviac line that will be inserted into Natalie's chest area.  This will make it easier for blood draws and medicine to be administered.  It will be a stress saver too, as Natalie is anything but a "lamb to the slaughter" when it comes to needles.  Case in point, this morning they needed to draw blood and when Natalie caught wind of that information she quickly sprinted underneath the medical table to the furthest corner away from everyone in the room.  Due to furniture placement, and me not being the flexible person I once thought I might have been, she really was out of my reach.  I said, "Natalie, we can do this one of two ways, you may come out, or I'm coming in after you."  I was praying she wouldn't call my bluff, luckily she didn't.  There was no way I could have reached her.  I imagined for a split second if she had called me on it that I would have had to get on my hands and knees and twist myself in a manner that would have most definitely split my pants open in front of the phlobotomist......anyhow disaster diverted.  We are greatful however that the doctors are taking such precaution with our girls, and do not mind the delay if it means insuring success.

Thank you again to all of you who read and have assisted us during this time.


  1. Lisy, you are hilarious! Good thing Natalie didn't call your bluff:) I love the way you are so descriptive in your helps me to understand all that is going on so much better. I am sorry for little set back, but hopefully it will just be scar tissue and they can move forward next week. We love you and are here for you in any way!!

  2. I'm glad that the doctors are doing it right. And that you didn't split your pants.

  3. I´m amazed that Natalie has been as brave as she has around doctors, considering her extensive medical background. There´s probably no way we´ll be able to get her to consider going into nursing as a career!