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, January 5, 2017

10 Months of normal life goes fast.

I got onto this blog a couple weeks ago and was surprised to see that it has been nearly 10 months since I have posted.  I can't believe how fast time goes.  I hear that the older you get the faster time goes.  I believe that...also the busier you get the faster time goes.

I love being busy, but I still think there is a balance.  I've been trying very hard to make it a priority to have dinner around the table as a family as often as possible.  This year Matthew is not playing competitive basketball and Blair is not in Jr. Jazz, which helps with the dinner hour.  Although, we decided to take advantage of the 5th and 6th grade ski passes through Ski Utah, so it's going to be a ski year for us.  Mostly a Saturday sport.
So far, Natalie, Matthew, and Blair love skiing.  Matthew and Blair think they've found their new favorite sport.  I guess the fruit doesn't fall far from the tree(s).
So anyway I wouldn't trade family dinner time for anything.  Already 2 nights, sometimes 3 nights a week are too buys for the dinner hour. So had we continued with all the other sports there would be no available nights in a week for family dinner time.  My kids are much better behaved when we have that time to eat a healthy home cooked meal and talk about what is going on in each of our lives. It really helps with communication between all of us and we as parents feel more informed about what is "really" happening in their lives.  But as long as we live in this society, making way for "Family Dinner Time" will always be a fight to protect.  I definitely love how our young people have so many opportunities and how talented they are, but I still feel that nothing can replace the learning and uniting that comes from the time spent together at home...I guess it's easier to see this benefit in a more eternal or big picture way.

Speaking of the big picture, my sweet and amazingly talented Mother created this fabric wall hanging, called the Plan of Salvation or Plan of Happiness.  She made one for each of her children.
We love to use this for Family Home Evening lessons.  It truly shares a great message of where we were before we came to this earth and what happens when we pass from this life.  You can't see the back but there is a list of scriptures that explain the beautiful artwork message on the front.




Next week Natalie and Alice have there 1 year Bone Marrow Follow-up visit.  It's a big deal, they had to do a bazillion labs, etc.  We are anxious to see what the doctors/labs say.  We can't imagine that we will hear unfavorable news as they have appeared to be so healthy.  I will post in detail about this visit soon.  Also I would like to recap this past year.  We have done some great things and I want to record it all.  Stay tuned.

We can't believe it has been 5 years since Natalie's transplant and Alice's first transplant???
WOW!!!!


Lisy

12 comments:

  1. I'm having a look at the blog because a friend got in touch after her sister was contacted by the marrow registry as a potential match. How did Alice's followup visit go in January? Hopefully no news is good news. Best to Alice, and to all of you!

    -Allan

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  8. I have being on blog Sites for a while now and today I felt like I should share my story because I was a victim too. I had HIV for 6 years and i never thought I would ever get a cure I had and this made it impossible for me to get married to the man I was supposed to get married to even after 2 years of relationship he broke up with me when he finds out I was HIV positive. So I got to know about Dr. Itua on Blog Site who treated someone and the person shared a story of how she got a cured and let her contact details, I contacted Dr. Itua and he actually confirmed it and I decided to give a try too and use his herbal medicine that was how my burden ended completely. My son will be 2 soon and I am grateful to God and thankful to his medicine too.Dr Itua Can As Well Cure The Following Disease…Alzheimer’s disease,Bechet’s disease,Crohn’s disease,Parkinson's disease,Schizophrenia,Lung Cancer,Breast Cancer,Colo-Rectal Cancer,Blood Cancer,Prostate Cancer,siva.Fatal Familial Insomnia Factor V Leiden Mutation ,Epilepsy Dupuytren's disease,Desmoplastic small-round-cell tumor Diabetes ,Coeliac disease,Creutzfeldt–Jakob disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
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  9. I check back to this blog often hoping to get an update on Alice and Natalie. I hope the family is doing well.

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  10. Thanks for your sharing your story. Praying for the precious Fishes!

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