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, July 24, 2013

Catching Up

Lately we are having a hard time posting, mostly because of time and exhaustion.  We hope to be more diligent.  Is it true that when life delivers overwhelming challenges everything seems more difficult than it really is?  The littlest tasks can seem so enormous.

I remember in High School feeling overwhelmed about cleaning my room.  Wow...what would that be like now.  It's a good thing life comes to us one step at a time.

It's been about two weeks since our last the meantime Tyler and I have done lots of thinking, pondering, praying and worrying.  We still feel about the same regarding our situation; and that is...'not sure what to do'.  This has been very hard for us.  We hope and pray that we will be directed in the right way, and can feel comfortable with one of the options available.

As for Alice she is happy, yet seems to be slipping a little.  Her GVHD is picking up again, at least we think it is.  This will be confirmed by a biopsy of her gut next week.  Time seems to be taking precedence with Alice.  We wonder how her little body can manage so well in such a condition. We hope time continues to treat her right...we need just a little more to sort it all out.

Dr. Cowan at UCSF sent a summary of his thoughts.  He gave our doctors a list of some tests that should be done to help us move forward.  These tests were drawn this past Monday.  We are planning to do some more this next week.  Once all the results are back, more information will be available to us and hopefully the next decision will be more clear.  I would go into more detail about the kinds of test we are running...but it would take forever.

This coming week Tyler and I will both accompany Alice in clinic; we have a conference with the team of doctors to review some of the lab results that will be available as well as continue to explore our options.

Monday Dr. Boyer informed us that they will contact Alice's donor (new donor) to postpone things for now...Alice was scheduled to enter the hospital the beginning of August and have transplant on the 8th (which is her birthday).   Obviously these were plans we had made months ago, but didn't realize that it was still scheduled until now.

Status Update:

Monday July 15th: Alice's Counts
ANC 1200
Platelets 11
Hemoglobin 9.5

Alice received platelets and IVIG.

Monday July 22nd: Alice's Counts
ANC 2700
Platelets 9
Hemoglobin 7.8

Alice received red blood cells and platelets.

My sweet sister-in-law Mckenzie asked me what the reference is for Alice's counts.  She would like to know what is normal for the average person and what is considered normal for Alice on a regular basis.  I loved her idea.

Check out the new addition on the side bar of the blog for these references.  I didn't include normal for Alice, because as per the last several months her normal is consistently well below the average.

Just hanging out while getting blood.

Side Notes:

Natalie asked Tyler if she could sign up for something.  Tyler got online to see what was available. They both decided on cross country.  She was so fascinated by the idea of running.  I had no idea about their doings, until I saw her wearing her running shoes and hat with a bottle of water stretching.  I asked her where she was going..."running", she said.
Later as the neighbor and I were visiting we saw her running around the block.  She kept going and going.  When she finished she had run a mile.  I couldn't believe it.  I was so proud of her.  Later in the evening her legs hurt...Tyler iced them and rubbed them for her.  The next day she ran a mile and a half...and then the next she ran two miles--all without stopping.  If there's one thing Natalie's determined.

When having dinner, we go around the table taking turns talking about our day.  When it came Evie's turn she sang out in her loudest voice...Jingle Bells.  It was so funny and made us all laugh. I have no idea where that came from.  It was not a quiet meal from there out.

1 comment:

  1. I think about you guys constantly!! I keep praying you will find the answers you are needing to help Alice. I am glad to hear that the docs are cooperating. This is about Alice, not EGO'S!!!

    Way to go Natalie! What a cool thing to do and how amazing that she can! Emily's stamina was so much less than our other kids. She finally seems to be catching up now with kids her age.

    WE love you! Keep smiling and taking one bite of that elephant at a time...he must be 1/2 way eaten by now don't you think? :)