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, March 19, 2012

Clinic Visit and Counts are Up!

It was a challenge to get both girls to look at the camera at the same time.

Natalie and Alice had a clinic visit today and we received great news. Both girls are doing much better than last week. Alice's ANC is at 3000 and Natalie's is 1000. The booster shot they gave Alice last week really made a difference, however, with Natalie she came up 400 points without any help. Natalie is able to come off a medication that helps with liver function (Actigall). Alice is able to come off a medication that helps with stomach function (Reglan). Alice's steroid will taper down another step. Both girls will bump up a step with their anti-rejection medication (Cyclosporine). It is very normal to go up and down many times with the Cyclosporine.

Natalie is only two weeks from her 100 day mark. She keeps asking when she can have a hamburger from Wendy's or something like it. I suppose just because she has not been able to eat fast food or any restaurant food it makes her wish for it more. Once she is able to drink the full amount of her fluids daily and maintains stable counts she will no longer need the Broviac line. Although, she may not have a line in the near future, there are yet many blood draws to least for six more years.

Alice's line is repaired and working wonderfully, another tender mercy. It is common for a line to clot when broken, however, Alice's did not. It would have been a bigger deal to fix had it clotted. We stayed at the hospital only 2 1/2 hours and were home by 2:30 a.m. Not too bad!!
In fact she did not want to leave...she was ready to stay for a while apparently. Upon arriving she asked for a pillow, crackers and cheese, and the Backyardigans; a version only the hospital has. When it was time to go home she was sad, of course until the nurse gave her the Backyardigans movie to keep. I told her we needed to hurry home to show it to Dad...that was the ticket, she then cooperated to put on her coat and mask to make the late night drive back home.

Tyler and I received a letter in the mail today from the CEO of the American Red Cross (Lewis & Clark Region).

Here is what it said:

"I want to express my sincere thanks to you all for your support of the American Red Cross. Through your efforts 475 donors came to donate including 145 first time donors. Your situation has touched the hearts and lives of many others and is a true example of the Circle of Life."

We are not to receive this gratitude alone. It is because of many sweet and amazing people who came to donate that made this happen. Thank you to all who helped organize the blood drives and especially for our sweet friend Wendy who put forth much time into this endeavor. We also want to thank the many people who came to donate and were not able to due to time. It's very humbling to imagine the great blessings that will come to those who will benefit from the blood drives, including our girls.



  1. I just wanted to let you all know that tomorrow afternoon, I will be donating blood for the first time. It is this blog, and your family's story that inspired me to do so; I have been terrified of needles and donating blood because of this fear, but living in fear of the unknown isn't living life to its fullest capacity. I am in Georgia, so I don't know if my blood will make it to your family, but I am excited to donate for anyone in need, nonetheless. Best wishes to you all! The progress lately has brought tears of joy to me. :)

  2. What happy, exciting news! We are all so glad that the girls are continuing to improve. We love you.

  3. We are excited to hear this great news! I can't believe Natalie is so close to her 100 day mark! Hopefully she will get that Wendy's burger soon! :) We continue to pray for you and we love you!