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, September 2, 2014

Good Bye Broviac

Today Alice lost a huge part of her.  A part that had a bitter sweet attachment to her.  She had her Broviac line removed after nearly three years of use; it was time to say good bye to her practically permanent appendage.

On our way to the hospital, Alice said to me, "Mom, guess who else is a part of the family?"  I said, "I have no idea Alice..who?"  She said with a sentimental tone in her voice, "My line is."  It made me smile to think that she has found a way to allow her line to become a positive thing in her life.  Interestingly enough dressing changes over the past several months have become a breeze and in fact she reminded us of when it needed changing.

Alice has figured out that our remaining clinic visits will include needle pokes with her line gone, therefore she was a little reluctant to let it go.

The longer a line has been in place the more difficult it is to remove because of the scar tissue that builds around the inside cuff.  Alice's wasn't as difficult to remove as they anticipated.  Alice asked the surgeon if she could keep her Broviac line, instead we took pictures.

Tyler and I are going to feel strange each night, as if we are forgetting something, with her line gone; it has been over four years that we have had to maintain a central line of some sorts.  We are very thankful that her Broviac has endured so well...this is a blessing, it's not usually to have one last so long.

Anyway this is a major step, one that is worth recognizing.  It truly marks the beginning of a new phase for us.  We hope the goodness continues, especially as we approach the winter months.  Regardless we have come a very long way and will push forward continually.


Waiting to be called back to surgery.

One last picture.

The complete Broviac Line
The red part is the cuff that was just under her skin, the black line below the red cuff was the stitch on the outside of her skin, it was to hold her line in place on the outside, it came loose long ago.
I hope this isn't gross to look at.  Nothing seems to phase us anymore.

I saw this at Wal-Mart recently...happy to see they raised so much money.
How ironic, in this picture you can see her freshly placed Broviac Line.
Alice's very last dressing change!!!


  1. Hi Lisy and Family, This is Ashley Wood, we met last year during my son Porter's chemo treatments. I have always admired your families strength and have been following your updates. Congratulations on the new baby!!! What a lucky boy to be part of such an amazing family. Congratulations a to Alice!!! So happy to hear you are in good health and that your finally tube free! We saw your daddy the day Porters broviac was removed. We couldn't stop smiling. Best wishes for your family this coming year! God is so good:)

  2. Hooray! Sorry I haven't followed your story as faithfully as I should the past few years. We're so glad to be back and to have you as neighbors again. I hope the girls can come over and play sometime soon! We love you guys.