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.

Thursday, October 10, 2013

To the D Pod

This morning as I drove Alice to the hospital, I didn't mind the rush hour traffic. I purposely allowed my mind to toil in the short term. I found myself looking for slower traffic and merging into it, foolishly thinking that I was defying the inevitable. I would glance in the mirror to watch Alice in her car seat hum a song or ask me a question. The ride was no different than the rides before except that I wondered if it might be the last one.  Upon arriving she requested to ride in the stroller up to the fourth floor. I obliged and off we went through the north entrance and up the elevator painted with rabbits. On the 4th floor Alice then requested to get out of the stroller and do her traditional entrance to ICS by hitting the door entrance button and walk through the corridor she is so familiar with. Except this time she did not walk...she hopped, and it was cute. Cute enough to get the attention the nurses to welcome her back with happy greetings and concerned faces. Down the "D" pod and into a room we have made residence in several times before. Straight to the window she went to spy the new addition of the hospital being built. But it wasn't the building she was interested in, but the stuffed "safety bear" conspicuously placed in the third row of windows second from the left.

As I smiled and acknowledged her excitement the nurses and techs prepped for her vitals and chemo. Today will be 30 minutes of Fludarabine designed for cancer patients to destroy cancer cells. In Alice's case this chemo will destroy all of her cells within her immune system. Much like Roundup weed killer will affect any growth it touches, the Fludarabine will do the same. It will again, leave her body without the protection I have learned not to take for granted.  Her side effects will be nausea, vomiting, diarrhea and my least favorite the mouth sores. It will also drop her blood counts in a couple weeks too. She will receive one dose each day for four days. I am nervous, more so than the last go around. Nevertheless we have punched in, and we are not punching out until this is over.




    May be helpful - Great company/great people.

  2. Your sweet family and "little Alice" are still in every prayer offered in the Russ house. Hang in there, we sure love you all!!!

  3. I have really grown to love Alice, in all her sweet, crazy wonderfullness. She will be in my thoughts and well wishes every day throughout treatment this time. She really is one in a million. I am thinking positive and think she will come through this all right. My best wishes to the rest of the family. There are a lot of people who care. xox Katie

  4. We are praying for you!! Alice is one tough are her parents!! :) LOVE YOU!!!

  5. Keep Strong you Guys! You are the Greatest of People, praying for all the blessings you need to come your way.