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, May 8, 2013

Update

This will be a quick update.  I have some pictures but can't find the cable to down load them...it's a common thing for me to loose.

Friday May 3rd,
Natalie came home from her short two day stay in the hospital.  She was so excited to come home as she hadn't yet slept in her own bed since Hawaii.  We headed from the hospital to Grandpa Duncan's viewing.  My grandpa passed away while we were in Hawaii.  He was one month away from 94 and lived an amazing life.  We are so happy we had the chance to visit with him before we left on our trip.  Saturday was the funeral.  We are so happy we could be a part of it.  We will miss him.

Monday May 6th,
Alice had clinic.  It was a long day, we expected this as last week was quick with no infusions...we tried to plan it that way, so while in Hawaii nothing at home would be too eventful.  However,  this time in clinic Alice not only needed blood and platelets but her pamidronate was due.  It alone is a three hour infusion.  Pamidronate is used to strengthen bones and prevent bone loss.  It is given once every three months.
Alice's ANC this week was 800, Platelets 10, Hemoglobin 7.9
Alice and I finally got home at 7:30 pm.  Each week it takes a little longer to match her blood.

Tuesday May 7th,
Alice had an orthopedic appointment today.  Her arm is healing very well.  I really think the calcium supplement she is taking is making a big difference.  Prior to her appointment she again managed to slip her cast off.  She must not like the saw. She is now wearing a black Velcro removable cast for two more weeks and then will be cast free.  Every time we go to the orthopedic office she and I use the side door to avoid the waiting room; near the door is a coat rack with a hook just her height.  Her favorite thing is to hang her jacket while we visit with the doctor.

Wednesday May 8th,
Alice had a bone marrow biopsy today.  She went to the Rapid Treatment Unit.  It is much easier than going through same day surgery.  The NP had to poke her three times to find what she needed.  I know Brenda, NP is great with the biopsies, so I worried a little that maybe there just wasn't enough marrow to work with.  Biopsy results will be in by Monday, our next clinic visit.  The doctors plan to sit with Tyler and I together to discuss the results and the next step in moving forward with Alice.

Tyler has been working on putting together a video of our Hawaii trip...it's been hard to find the time to finish it up.  It's coming along and we can't wait to share it.

Natalie saw the video today and almost cried because she wants to go back.  We had the best time ever!  We only took nearly 1,800 pictures/videos. ;)  We didn't want to forget a thing.

Lisy
Posted by at 11:28 PM

2 comments:

  1. Jill HeapsMay 9, 2013 at 7:52 AM

    PRAYERS PRAYERS AND MORE PRAYERS my friend! Keep thinking happy Hawaii memories :)

    ReplyDelete
  2. janet rowleyMay 9, 2013 at 6:30 PM

    Lisy, It was wonderful to chat with you and Tyler last week in the hospital following your fabulous getaway. You both inspire me with your optimism and generous spirits! Liz and Logan are fortunate to have you as a SCID resource but especially blessed to call you their friends. Natalie and Alice are in our thoughts and prayers. xoxoxJanet Rowley (grandmother to Eli)

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