I know that it have been way too long since I have been able to write on here. A lot has been going on since my last write up, which has made us busy busy busy. Well, for starters, I just started a new job, after not working for more than 4 years. I have to say. I really do love my job. However, i find it a challenge to be away from home all day. Since Katlyn and I have nver been separated since she's been born, it's torture to only see her for a couple of hours in the evening.
Katlyn is doing very well though. Her immune system is still not where we want it to be, but I can say that we have definitely started to live our lives outside the bubble. Katlyn has been sick twice, and both times she was able to fight it off. To be honest, it was very veery scarey for Johnathan and I. She was fine though, which shows us that she does have somewhat an immune system. And what Katlyn does have, works great! I don't really think twice nowadays if I need to go into a store, Katlyn comes with me.
On the other side of things, Katlyn recently had one of her tumors removed. We were not really expecting to hear anything other than we were successful in getting the whole thing. Unfortunately, that was not the case. We suspect that this tumor is probably bigger and deeper than any of her others. We went quite a bit deeper than we had with the last one, but still it was not deep enough. All borders of the part they took, are still positive for DFSP. So we go to NIH tomorrow so we can meet and discuss what our next step will be. Johnathan and I are still in favour of surgery if possible, as anything else could have a negative effect on her immune system. The way we see it, is that her immune system is the most important thing. Without it Katlyn would probably be very sick, and she may not get better. That is not a place we want to go. When you think about the possibility that everything we have worked so hard to achieve, could possibly be reversed because of a stupid chemo drug, it's very hard for us to think any other waay.
So off we go once again. To be honest, I have no idea what we are going to conclude. Is surgery even possible? Johnathan and I have discussed the fact that her first surgery was done in Canada by a Moh's surgeon and a plastic surgeon, and the scar at this point is barely visible. Unfortunately the second scar is not the same. She has a scoop in her skin from where they took the tumor. I think we're both in agreement that it's definitely beneficial having a plastic surgeon as well as a surgeon. I think they understand scars and how they will lok in the future, which gives us an advantage.
Katlyn is well though. She is definitely growing up. I cannot believe she is almost four years old! Wow! Where does the time go?
So I will do my best to get on here a little more often, to update Katlyn's story. Katlyn, you're my little angel, and Mommy knows everything is going to be fine!!!