We just recently came back from a checkup to the IWK and will be leaving on the 24th to go to NIH. I thought now would be a great time to update about what has been going on. As I had mentioned before, Katlyn's skin had been sent to the expert in spindle cell tumors at Harvard. Well, apparently the expert says he does not think they are spindle cell tumors, but he does not know what they are. So at this time we still have no idea what the marks on Katlyn are. We only know that NIH sent her slides to Nebraska, the reason is still to be seen. Hopefully we'll have some answers when we get to NIH.
Since my last time writing on Katlyn's blog, her research blood results have come back. It seems as though Katlyn is making milestones with her counts now. She was at an all time high of 1500 neautrophils. Katlyn has never been that high on her own, without any drugs to push her counts up. The very exciting part about this number, is that 1500 neautrophils is a normal number. Katlyn has always had trouble with her neautrophils, so this is very exciting for us. Neautrophils will help Katlyn protect herself from bacteria.
Also, Katlyn's lymphocytes have been staying around 200, which as I mentioned before is the highest Katlyn has ever been. A count of 4,000 would be normal for Katlyn, but Katlyn used to have no lymphocytes at all. This is definitely a start. These cells will give Katlyn what she needs to fight a virus and such.
The ADA gene is still present in Katlyn as well. She is measuring 17%, which is where she has been. And the t-cell proliferation was around 17,000. This is the number that kept us in Maryland for so long. Katlyn had to be 10,000 in order to leave isolation.
All of this news has been very exciting for us. It is very encouraging to see things that we have never seen before.
Katlyn is doing extremely well. She is growing and learning at a normal pace, just like any other 2-year-old. She is keeping us very busy, expecially now that she has entered the terrible twos. I love it!!!!
We are starting to get in a routine around here, which makes it a lot easier to get things done. John works constantly and we miss him, but I know he just wants to take care of his family. And he is doing a great job at that.