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.

Friday, December 9, 2011

More News

Today was a day we would find out more regarding Alice's donor and Natalie's chances of needing a biopsy on her lung. With all of the information to digest, I sometimes struggle to stay focused. Moreover, the long days meeting with doctors seem to blend together, and it takes an evening of getting the kids to bed and staring at the wall for an hour to organize my thoughts again.

Our first meeting would result in the doctors telling us Alice's donor is still in place to donate however due to an undisclosed circumstance, will need to be reevaluated and therefore will place Alice back a couple weeks to a month before she would be admitted for transplant. It is frustrating, however we understand that this type of thing happens while waiting for a donation of this sort. In the meantime they will begin searching for a back up donor.

Natalie's situation has become more difficult. The Infectious Disease(ID) physicians have said the lesions on her lung are of a calcified property that has yet to be determined to be scare tissue or of a bacterial/fungal sort. They have noticed one large lesion and other micro lesions of the same property in her right lung. A chance (not promising) of learning more about the true properties of these lesions would be a lung biopsy.(Which would set Natalie back even further for transplant). The good news is that the large lesion has been noticeably becoming smaller compared to current and previous x-rays. The consensus for the doctors was to gather a half dozen of their peers from around the country to review x-rays and see if there is any physician with experience in Leaky SCIDS to determine what to do. The reason for such a meeting is because of the seriousness of Natalie's situation. That is, if we decide to move forward with the transplant and while Natalie receives her Chemo, should those lesions have any bacterial property to them she would have no way to fight back. It would consume her body; there would not be much the doctors could do to save her. Except for one thing, that being an emergency removal of her right lung.

It would seem to be the easy decision to say... "lets take the biopsy and see what the results are." However, taking a biopsy likely places transplant back to Spring time and within that window she is more than likely to catch something to make her sick because of her compromised immune system, and again the risk of surgery with the already fragile state of her lungs.

Her countenance today, as she listened to the doctors speak became what looked to me as one pleading for mercy. We had her prepped on receiving a transplant, and now she hears of possible surgeries before hand. It was a hard day and a long ride home. Usually she brightens up after we leave the hospital, not today. Although we have told her differently, I'm sure as we drove home, she processed and spliced the conversations in the patient room together and came up with her own conclusions. One of those conclusions being that this will never end.

Lisy and I will have a decision to make, and have the hope and faith that we will have all the information possible that will allow us to make the right one. The one that will ensure her that this chapter in her life will in fact have it's end and that brighter futures lie ahead for her.



  1. How frustrating and disheartening! All I know is that countless prayers are being offered in your behalf and know that through the Spirit you will be led to make the appropriate decisions. I pray that you'll have magnified faith, tender mercies, and small miracles each day to buoy you up. My heart just aches for little Natalie. I don't know how much more she can take!
    Sure love and admire you guys! Stefanie

  2. Sending love & hugs your way, we will remember you guys in our prayers. It seems a little harder when they can understand what is going on, process what is being said. We will pray for her to have strength, and hope and we will pray for you, as I am sure this is just turning your world upside down.

  3. We are praying for your sweet family. I can't imagine the things your beautiful girls are going through. We hope they will have the strength they need for this next little while. Good luck this next week! Love you guys! -Shumways

  4. Love you guys and praying for you

  5. Oh, so sorry to hear about all these complications. Our family is praying for you and your kiddos!

  6. We ditto Stefanies comment. You have a whole army of praying, caring, concerned people who love you alot. I'm remembering a line from the Sound of Music where Marie is talking to her Mother Superior, and the Mother counsels Marie with, "When God closes a door, He opens a window somewhere" (or something like that...)... And He will for you. We send our faith, love, prayers, hugs and hope to you. Brother and Sister Tolman