Wednesday, June 3, 2009
2 years post
So May 26 marked two years since Katlyn received her gene therapy. We marked the occasion with a routine visit to NIH. At first we were a little hesitant going because of the whole swine flu thing, but her doctors reassured us things should be fine. Plus the amount of precautions we take just in our everyday lives, it would probably be unlikely she would catch it. The airport isn't as scarey for us as it used to be. Most of the time, Katlyn wears a mask, especially when the area around her is more occupied. The rest is really simple. We just make sure she doesn't put her hands at her face or anything else in that area, since that's where germs enter your body. I'm really glad we are a lot more comfortable with travelling now, because Johnathan will be joining the Canadian Forces and it's possible I will have to take Katlyn by myself.
This trip was very enjoyable. It was nice to see the team of doctors that have got Katlyn this far. We were able to catch up with a lot of other families that we haven't talked to in a long time, as well as meet some very nice and interesting new families (including a family that is going through the protocol as we speak). I can really feel for them. Having your little one in isolation is not easy. I introduced the child's mother to my Katlyn so that she could see that although Katlyn's immune system isn't perfect, things do get easier. The 15 months Katlyn was in isolation was not very easy, but when we did finally come home, it was no biggie anymore.
Katlyn's immune system is about where it has been for awhile now. Her neutrophils are normal, which used to be our biggest focus. She is around 1600. Her lymphocytes are right around 200 and her cell function is normal. So that means that Katlyn does have a small number of cells, but what she does have is working just right. It was far from normal in the past, so this is very encouraging. Also we been given the green light to start some vacinations if we want. There is no way to check and see if they are taking or not because she is still on IVIG. But once she is done with that, we'll be able to see. Also we are now allowed to spend the night at the campground.
Besides that, it looks like Katlyn's next surgery will probably take place at NIH. They are talking about taking a 1 1/2 cm border this time of one, maybe two of the tumors. That will probably take place in about a month or so time. Also we are planning a much needed visit to the IWK. I cannot even remember the last time we were there, but it will be nice to meet with Katlyn's amazing team of doctor's there as well as catch up with some of our favorite nurses. It's hard to believe the IWK used to be like our home.
We have so much more freedom now. We are slowly but surely starting to live our lives outside of the bubble. We don't hesitate to take Katlyn somewhere now. She literally experiences new things and places on a daily basis. She has been borrowing books from our library as well as going fishing with her father. She spends pretty much her whole day outside enjoying every second of it. We were happy to finally have the yard to be able to get Katlyn a swing set. She loves it. Also we plan on putting Katlyn in swimming lessons this summer and maybe gymnastics in the fall.
We are truely loving every second of life. Yeah we have been through a lot, and still have a lot more to go through...but to be honest, we are truely truely happy. Life just feels so incredibly wonderful. We don't dwell on the negative things. Instead we focus our energy on the positives...and it seems like there have been more and more lately. Hopefully much more to look foward to.