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.

Saturday, February 22, 2014

Clinic and more Blood

I thought clinic this week would be much faster than it was. When the doctors came in they seemed to be very positive in their report from Alice's numbers. Her ANC was at 2.6 (2600) and her platelets were looking strong at (178). However, her Hemo numbers were much lower than expected (7.4)  The doctor's thoughts were that because Alice has been on so much mediation her blood counts suffered. Or, she is hemolyzing again. If it is the latter it would not be a good sign for her. They drew more samples and will let us know in a couple days. I will admit that it sets me on edge to the possibility that her body may be fighting itself once again. Nevertheless, we will wait for those tests to come back and cross that bridge when we get there. The day however was long. It wasn't until 3pm that a match for blood was made. We made our usual exit from our room into the empty Oncology waiting area late in the evening. We were both exhausted; me from waiting and helping, Alice from the meds and receiving blood. It was good to at least be able to come home and not have to stay overnight.

I must also note that Lisy sent me up there with a can of Kipper Snacks for Alice. I don't recall if I've ever mentioned my disdain for Kipper Snacks, but I will save that for another post. Luckily I didn't have to crack that can open. The odor alone from those smelly things could make them apart of the chemo family line. Anyhow, the Kippers make an appearance in this time lapse.

Tyler



Posted by at 1:48 PM

5 comments:

  1. McKenzie SchellenbergFebruary 23, 2014 at 11:41 PM

    Tyler your videos crack me up!! I love that you can do the craziest things and from the look of it Alice doesn't even notice! I hope you are all doing well! Give our love to little Alice and the rest of the family! We pray for you and think about you all the time!!

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  2. AnonymousFebruary 24, 2014 at 7:53 AM

    I love the stop motion bit you did there. The best thing is Alice doesn't even seem to notice

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  3. TaraFebruary 24, 2014 at 11:58 AM

    I am so with you on the Kipper snacks..my husband loves sardines and while I buy them for him occasionally (in his Christmas stocking and a few other times through the year) I insist that the tin go outside in the trash immediatly.

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  4. TamaraMarch 3, 2014 at 10:31 PM

    Haha Tyler this is so great. We sure miss you guys. Prayers and best wishes your way always!!!

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  5. Stef plus 3March 5, 2014 at 6:12 PM

    I love your time lapse video and the above person beat me to saying it's soooo funny that Alice could have cared less, lol!!

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