Thursday, May 29, 2008


It's been awhile since I have updated Katlyn's blog, but there has been reason. Last week we had a visit at NIH and we were very happy to see that Katlyn's neautrophils were climbing and staying within normal range. She reached an ultimate high of 3600. We were very happy about this. Katlyn received her IVIG last Tuesday and everything went well with that. On Wednesday Katlyn was brought into the OR where she was scheduled to undergo four biopsies on those spots I have mentioned. Everything with the surgery went very well. A couple of hours after the surgery we were notified that Katlyn's neautrophils would probably drop because she was given a type of medication that Katlyn has been shown to be sensitive to in the past. It is standard practice for a patient to be given something during surgery to reduce the chances of infection. Katlyn apparently has been given this medication in the past and it has caused her neautrophils to drop possibly. You see, Katlyn was having a problem with her neautrophils anyway, so they didn't know if it was an effect of the medication.
So we checked Katlyn on Thursdasy morning and she had indeed dropped down to 600. By that evening she had gone up to 800 and so we came home on Friday morning. You see, 500 is the safe mark and they would have kept Katyln is she dropped below that. So we checked her again on Saturday and she climbed back up to 1400. The newest count was yesterday and she had dropped. We thought the effects of the medication were over, but a count of 470 says otherwise. So now we have to keep Katlyn even safer. We can't go outside if it's windly, or around freshly mowed grass. We have to watch her very closely and take extra care and caution right now. I will be taking her again for bloodwork on Monday and hopefully things are looking better.
On the plus side, Katlyn is feeling great. A couple of her steri-strips had fallen off one of her spots, but while I was at the hospital yesterday they fixed it. The nurse also took a look at all of the other spots and said they looked good.
Now here's the very exciting part. Katlyn toxic matobolite level was down to 0.8%. That is what kills off her cells and why she has no immune system. Because Katlyn has a defective ADA gene, her body doesn't usually filter those toxins. Obviously, Katlyn is having ADA activity because thos toxins are being moved out. This is great. This shows her gene therapy is working and it's only a matter of time and her cells will come up stay up. I beleive that someday soon, Katlyn will be healthy.
Katlyn is happy and well. The 26th marked one year since her transplant, and I just can't belive it's been a year. In some senses it's been a long time, in some other ways it passed very quickly.

Monday, May 12, 2008

Happy Mother's Day

Katlyn is doing well. I took her for just routine blood work on Friday and the doctor called me that afternoon to ask how Katlyn was doing. He probed me with questions as to how she was feelings. Initially, I was a bit worried about the nature of his questions, until I realized he was asking because Katlyn counts were very good and he just wanted to be sure it wasn't because she was sick. He told me her neutrophil count was incredible, at 2500. This is incredible. For those of you who have read Katlyn's blog all along, you know that Katlyn has always had problems with this number. She had to be at 1200 in order to participate in gene therapy, and it took us 8 months of trying different things to get her to that point. A count of 2500 is amazing because she has never ever been that high and that count is very very normal.
Secondly he told me that Katlyn lymphocytes count was about 170. She has been running around 100, so this is also progress. Like I have mentioned, we still have a long way to go. A normal lymphocyte count for Katlyn would be around 4000, but thinking back to when Katlyn was first diagnosed at 6 months old...she had no lymphocytes. All of this news is very encouraging for us. On May 26 Katlyn will be 1 year post gene therapy, and it's nice to see that she is still going up. She seems to take jumps every onece in ahwile and when she takes these jumps, she goes higher and higher. The last jump I believe brought her up to about 1200. Whenever we get news like this it helps reaasurre us that Katlyn's gene therapy is working.
So we will be heading to Maryland a bit earlier this month. We will be travelling down on Monday the 19th and staying for about a week. This time, Katlyn will be spending her time in the hospital as she will be having surgery. They are going to biopsy three of her tumours, because they feel they need to find out more information about these tumours. As I mentioned before, the type of tumour that they found is a very rare type of tumour and a patient has never had many like Katlyn. We have counted 12 marks in all so far. So they will be checking one of her chest which feels as though there is a node in it. There is also one on the back of her leg that seems to be changing in appearance. And the third one will be one that we have noticed very recently. They want to take a look at all of these and compare them. Hopefully we'll find that none of them are tumours at all. Time will tell what all these marks on our daughter are and I remain sure of myself that my little angel is going to do great. Katyln is a fighter and she is going to get through this as well.
Mother's Day was so great. Johnathan and I took Katlyn outside for a nice little picnic in the park and then we went for a little drive. Once we came home we played outside for a while, rolling down the hills and playing hide-and-seek around the trees. It was very fun. Recently, Katlyn and Haley helped me to plant a couple of flower pots and I noticed they sprouted yesterday. It was pretty neat because it ended up kind of being a Mother's Day gift will out it meaning to be. I also got two very nice summer outfits which I absolutely love. And the greatest Mother's Day gift of all was looking at Katlyn and seeing how happy she is and how far she has come. I am so proud of her. I am so happy and proud to be Katlyn's mother.
In closing of this post I would like to mention my mother and John's mother. They has been so great through all of this. They have helped us in every possible way they can. We are so lucky to have them. My mother is very far away from us, but she is always helping us. Wheather it's an ear to cry in or going on a long trip to Halifax with me, she is always there. Thanks MOM. Johnathan's mother is also very supportive. Thanks for everything you do. Wheather it be picking us up water or something else we need when your out and about or listening to us when we just need to vent. You are incredible women and we are so very lucky to have you as our mothers. Thanks for everything you do!!!!!!!!