Sunday, July 1, 2007

Katlyn getting in trouble.
Drawing on the fridge.

Running away from me with crayon.
See how silly she can be.
Really silly!!!!!!!!!!!!!
And a little bugger too!!!!!
Sneaking back in for more trouble. Probably to try and play with the plugs I imagine.

Sorry I haven't updated Katlyn's blog in a little while. We have been pretty busy and there hasn't been a whole lot to update. Katlyn had her blood work on Friday and her neautrophil count was 270. We're still waiting for her to take that leap and start climbing back up. I had a talk with her doctor about it and he feels that Katlyn is doing fine. They are learning that some
reason some children with ada scid have a problem with their neautrophils. It seems that some of them take a little longer to climb back up than other. He said it doesn't seem as though they have done any permanent damage to Katlyn's bone marrow with the chemo because her other counts are fine. The expect in such a case her hemoglobin's and platelets would be low and for Katlyn they are normal. When she had her harvest her hemoglobin's did drop for a bit, which they were expecting to happen anyway, but then they climbed back up and they're fine. So we just have to be patient and wait.
There is a 30 day rule. After 30 days if they see 3 neautrophil counts under 500, they have the option to give Katlyn her bone marrow back. Her doctor told us they were just going to see what happens and make a decision at that time. It may be that they might make an exception because they never took into account that sometimes they have a bit of a struggle with their neautrophils. If they ever do give Katlyn the cells back, it doesn't erase the gene therapy or anything like that. They are only going to do that if they feel it's in Katlyn's best interests.
On Tuesday Katlyn will have her counts checked again as well as her first research blood taken. This research blood will be used to measured a lot of different things including how much ada activity is detected in Katlyn's system.
We just keep praying, stay strong and try our best to make sure Katlyn stays safe. She's going to do great and this time next year she is going to have almost a fully functioning immune system. I just know it. Our girl is a little fight.
Oh yeah, I wanted to update my four-leave-clover count. On Saturday I found 7 four-leave-clovers and 1 five-leave-clover. I didn't even know there was such a thing as five. They are all on Katlyn's window though to give her good luck. I just think it's pretty neat how I found so many in one day. The total is 11 four-leave-clovers since we have been here and one five.

Today marks the anniversary of the day my younger brother was killed in a car accident. He was only 18 and the shock was unbelievable for myself and my family. This day is a very hard day for me and I know it especially hard for my mother. There isn't one day that doesn't go by that I don't think about him. Sometimes I wonder what it would be like to have him around now. I just know that he would love Katlyn so much. I feel he is watching over her though. I know this blog is about Katlyn, but I feel as though my primary reason for starting it was to look back on it some day with her. Although she will never have the opportunity to be able to know my brother, I want her to know how much he means to my family and I, and besides she's a part of him. He would love you so much Katlyn, I just know it.

GALLANT - In loving memory of Kurtis, who passed away July 1, 2004.

This month comes with sad regret,
Brings back a day we will never forget
The blow was great, the shock severe,
We little thought the end was near.
And only those who have lost can tell,
The pain of parting without farewell
No one knows the grief we bear
When the family meets & you're not there
You left so suddenly,our thoughts unknown
But you left us memories, we are proud to own
In our hearts forever Daisy, Mom, friends & family