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.

Friday, February 14, 2014

Valentine's Day

I must apologize for my tardiness for this last post. Lisy has been on my case to get it done and each time I sit down to do it I either feel a tug at my shirt from Evelyn or I'm putting out a fire between the three oldest. Our last post was while we were in the hospital. Thankfully this time it really was just a small virus Alice had caught from me, and the stay only lasted a couple days. Her fever lasted the first night and never came back, so the couple days we were there were occupied by the usual vomiting and watching movies and playing games. I was glad to come home, but sad to see the ice rink  was melting. Its been such a weird February, far to warm for a rink to stay frozen. We will have to take it down next week and store up the boards and plastic for next year.

This past week has been really tough on Natalie, as she has been sick too. Her virus has caused her threshold for seizures to dip and on a couple occasions we have felt it necessary to utilize the Versed. All day she would complain of head feeling "funny" but at the same time trying to help us understand that it wasn't a headache. The "feel funnies" would occur every three minutes or so. It was so distressing to her that she could not focus and would become dizzy. Both Lisy and I feel these episodes are minor seizures. They worry us because her current seizure medicine doesn't seem to be working. We were relieved this morning as she woke up feeling much better and has not had an episode. Perhaps her virus has passed and therefore her seizures have stopped. Its so hard to predict what is going on with her when she becomes sick.

Clinic for Alice was on Thursday. Her liver counts are looking good and her ANC was at 1400. It was a rare trip to clinic without her having to stay all day. They were home early afternoon and it was welcome because I was loosing the battle with the girls. Natalie was still sick at the time and Eve was wearing my ears out with her constant yelling. When Lisy gets home we always look at each other and exhale with exhaustion. Its a look that says, hey I know you are tired, but saddle up because we still have eight more hours of care for this family until we can go to bed.. Even when we are able to go to bed we know it will only a couple hours until its time to get up again and change medicine or clean up vomit. I wonder sometimes when this chapter will come to a close in our lives. Its certainly been worse, and I know we could not do this without the help and love from all of you,  but I still wonder when it will be over. What can I say? I'm human?

Shifting gears now, its Valentines Day and...... its my Birthday. Hooray. I'm 37.  Do you ever remember when we were young and we anticipated for days in advance the excitement of our birthday? I'm mean, it wasn't like Christmas, but you were pretty excited to have your own personal day. I've always enjoyed having my b-day on Valentine's Day. Even though growing up I would always get at least two people out of the day who would make the comment, "oh that must be why you have red hair!" Good grief. I will say, that comment would usually come from people at least 65 years and older. Come to think of it, I never have understood why there was this fascination from older people with red hair? I've grown up with it, used to bother me, but not much anymore. I remember in South Carolina, when my family would walk into the McDonald's off of Garners Ferry and Wildcat Rd. I would be excited to eat out but hated how all eight of us streamed in there with our red hair. I'm sure it looked like a PR stunt. As if we were the offspring of old Ronald himself. We would get the looks from everyone. Some would smirk and others take a small gasp of what fortunate event it was to see what looked like a bunch of leprechauns eating out for the night. It never failed, there always seemed to be one old lady who would come up to one of us and exclaim, "I used to have red hair just like you!" Or, I have a grand child who has red hair!" I would be cordial and give a half hearted "thanks." However, in my mind I would be thinking up a sarcastic thought of "great, now go back to your McSalad, and try not to drown in your Thousand Island dressing."

 It really is funny to think about it now because my hair is mostly gone and what is left really doesn't have the flair it used to. So every time I see a kid with bright red hair I think, "hey, I used to have red hair like that too!" One day I recon, I will be old enough to tell him/her....but not yet. I digress. I hope all of you have a wonderful Valentine's Day.

Me and my bro. The movie Labyrinth was out and I was going for the David Bowie look. I know, I know, so close. 

On a more important note, certainly more important than my B-day. We have been notified of a family who is going through the struggles that life brings. They have a blog too and are doing a fundraiser for their child who suffers from a genetic disorder that is life threatening. Here is the link Our hopes and prayers are with them during this time.

1 comment:

  1. Belated Happy Happy birthday Tyler!! My husband has red hair and is American born but VERY proud of his Irish heritage. Are you of Irish descent? :)
    On another note I was wondering if the docs are watching sweet little Alice for Barret's Esophagus, a nasty condition that sometimes develops as a result of excessive vomiting? I have it and it is being treated. Best of everything to you and your precious family.