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.

Sunday, January 25, 2015

Watch Out Disney World!


January 12th
Tyler spent the day with Alice in clinic.  Her counts were good and better than we anticipated. Hemoglobin was 11.5.  Her liver function tests thankfully dropped drastically.  They were outrageously high at our last clinic visit, we think it was due to the positive flu test she had.  Viruses do crazy things to lab values.  With that said we are keeping a watch on her liver.

Alice doesn't return to clinic until February.  The doctors feel confident that she can go four weeks between visits.  Hooray!


January 20th
Today Alice had a follow up with ophthalmology in Riverton.  Alice has bits of cataracts in her eyes. She sometimes complains of cloudiness in her eye, thus the cataracts.  We have been watching her eyes over the past few years.  Thankfully it isn't too much worse than the last time we checked, but could still worsen over time.  If so she will need surgery to fix it.  Thankfully this is something that is very treatable and shouldn't impair her vision with treatment; steroids and other medications could be the culprit.  Also she had some eye issues when she had the chicken pox spread into her right eye, which also might contribute to some of this.

WOW... there are plenty of extra issues that come along with chronic illness...SCID kids are famous for many side issues.  Ironically much of this seems to be small stuff up against Chemo and Bone Marrow transplants, GVHD, etc.  However, they are big issues still and need attention.  We often wonder how skewed our perception of reality has become.

I will say there is nothing wrong with thinking and believing your life is peachier than what it may seem from the outside.  Alice has been a great teacher of attitude, she has the best life anyone could ask for.  She loves it all; although, the times she does complain are so little, but surely those circumstances naturally deny pleasure.


COMING SOON...Alice will fulfill her long awaited WISH.  She and her family will be going to Disney World.  It is going to be wonderful! We are ready for a great time and almost wish for it to not come, because then it will be over.  But no worries, Tyler will have a great movie of it all and it will be cherished over the years.  Stay tuned to see her wish in action.

Love you all,
Lisy

p.s. I will be honest, I have felt nervous to go to Disney World because I worry Evie or someone will get lost.  I plan to put waterproof wrist bands on the little ones with my cell number written in black permanent marker.  I am open to any other tips in this matter. :)

9 comments:

  1. How exciting! On our recent trip to Disneyland I took a picture of my kids each morning after they were dressed and ready. That way if they got lost I would have a picture of exactly what they were wearing and how they looked. Although there are TONS of Disney employees everywhere, an upset, lost child will be noticed and helped almost immediately! Have fun!

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  2. So glad you get a little vacation time. When we went to Disney Land we had everyone dress in the same colors each day and tried to take a picture each morning. If you're worried about losing Evie, get a backpack harness. I have a Mini Mouse one you can use. The wrist band is a great idea! Have fun!
    JaNean

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  3. Make each adult exclusively responsible for specific children. Parents tend to think the other parent has "little _____," and worse, children know our tendencies to make this error and use it to their advantage to wander when each parent is otherwise distracted. An additional adult with the sole job of "counting" little ones every two "rides" or "places" can also help. Now, have loads of fun and get ready for those ride cams!!! :-)

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  4. so excited for you guys! Just some tips we learned...we went to the Walmart and got souvenirs (much cheaper than in Disney World...I know they give you money, but we were able to spend it on other things!) I do wish we would have given the kids some cash to spend any way they wanted. We got them souvenirs but Thomas wanted to choose them himself! So we learned that even giving them $20 would have given them some ownership on what they got. We also requested a car...Give Kids the world will take you but we wanted to have the freedom to do whatever, whenever we wanted. We took the kids to the beach on Sunday, we went to the NASA center too AND the Medieval dinner place is a lot of fun. It's right by Give Kids the World. Thomas was in heaven! You are going to have the BEST TIME EVER!!! It really is magical!

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  5. when i watched this video my heart breaks to see this young children suffers this diseases, I hope they are all okay now, I wish them a speedy recovery

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  6. oh I love Disney World, what you did on your kid is a good idea just in case you loose her from your sight

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  7. I love Disney World it reminds me of my childhood, love to go back here

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