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.

Wednesday, December 26, 2012

Alice's 1st Round of Rituxan

Alice spent the day in the clinic receiving her first round of four Rituximab treatments.  All in all everything went well enough.  After the first 15-20 minutes into the infusion she became sick, vomited and became red in the face.  She said, "Mom, I feel yucky...I'm sick."

The nurse stopped the infusion to let her body rest, we gave her some anti nausea medication and once she settled we began the infusion.  Things improved...she even slept through most of it, thankfully.

We learned that Alice's CMV (cold virus) came back positive...which means another IV infusion for her.  She will need Gangcyclovir every 12 hours for several weeks.  Hopefully in the next few weeks she will only require it every 24 hours.  Considering that she is entering another phase of immune breakdown (Rituximab),  the doctors don't want to take any chances on this cold virus...better to prevent it worsening.  I called the pharmacy and asked that I have a second pump, in order to be more efficient with her infusions...trying to promote more sleep at our house. :)

While in clinic I was able to coordinate many appointments for Natalie and Alice this up coming month.  January will be busy.  Natalie has visits with Pulmonology, Neurology, ENT, Cognitive Rehab, and Bone Marrow (1 yr. post transplant work-up).  For Alice she will finish her chemo before January is over and only has one final appointment with the orthopedic (for her leg)....and of course her continued weekly Bone Marrow appointments.

Hopefully after January, our schedule may ease up a little.  Possibly soon Natalie can start school.

It seems silly, but sometimes I get nervous to think maybe soon we will be merged back into normal life.  I worry that I won't be able to keep up with all the outside demands, etc.  Of course it will be awesome to participate in a variety of things, however, I worry that if it's too soon we will be disappointed or discouraged.  I suppose allowing fear to determine our decisions is a poor choice of route.  We only wish to do that which is best for each of our children physically and emotionally.

Somehow things come together and everything works always does.

The Ice sculptures are finished.

Not Feeling Well

Keeping the Pink Bucket Close

It's Over, All Better!

Going home, Alice brought her new backpack...full of treasures to the hospital.  She loves it.


  1. Lisy, I was able to watch your video brought me to tears. I cant believe all that your sweet family has endured, and you continue to stay so positive and faithful, thank you for your example! I will continue to pray for you and your girls. I hope this coming NEw Year brings many blessings to your family.

  2. We love you and are praying for you!! the future is always scary because of all the unknowns...put your trust in God and take it one step at a time :) Good luck this month!!