Monday, May 26, 2014

Perfect Match

So I got confirmation today that Katlyn has a perfect 10 out of 10 match!! Also, we were told that it would be ideal if the donor was male, as females that have been pregnant, can lead to a higher risk for graft versus host disease, and Katlyn's donor is a 30-year-old male!! I also learned today that for Katlyn's conditioning we will use a reduced intensity protocol. This will mean that they will give Katlyn less chemotherapy but more immunosuppressant medication. We will do this in order to avoid unwanted toxicity, and it will decrease rejection to the lowest. I know that this means her chemo is still going to be awful for her, but not as bad as it could have been. We also have tentative dates and are just waiting on the donor to confirm. Katlyn's admission to hospital to start conditioning would be on July 9 and then her bone marrow transplant with be on July 18. I can going through a whirlwind of emotions right now, but I just want to get my little girl better. I am extremely grateful to this unknown donor. What an amazing human being. Our hero.

Tuesday, May 20, 2014

So not a whole lot has gone on over the past few years with Katlyn as we have been patiently waiting for her gene therapy to start working. Well, Unfortunately we are finally at the point where we can say that it has not worked. We recently checked Katlyn's bone marrow to see if any of her stem cells very carrying the new gene. This is very important because it would mean that she was now producing these cells on her own. Well, she is not. Some of these cells are still inside of her but they are old and no new ones are being produced. So just like that, it failed. I can go on and on about how frustrated and upset I am, but I'm not going to. We had to try. Gene therapy just looked so perfect, but we knew from the beginning that it is still in the experimental stages. Not perfected yet. I do, however, feel as though Katlyn has contributed to research with her condition, thus making things easier someday. Actually I think she has helped a lot. So now we are moving on to the next chapter and Katlyn will be going for a bone marrow transplant in Montreal. We have activated the donor list and are aiming for her transplant to be at the beginning of July. Of course this depends a lot on the donor. Katlyn is in great shape for transplant. She recently tested negative for the norovirus, which she has carried for more that 2 years now. She is also no longer anemic and she is thriving well. She is growing!!! Her feet are now a size 2.5!! Her liver, which has been quite distressed over the last couple of years, also seems to have calmed down a bit. The way we see it is that we need to give Katlyn the best fighting chance at the healthiest life possible. She wants a dog more than anything!!! I pray someday she might be able to have new best friend puppy, and that is what we are focusing on right now. Katlyn is not an infant, and I have always been open and honest with her. She knows about transplant. She doesn't know all the details, but neither do I. I will however tell her as much as I can (without scaring her) along the way so that she can be prepared. For now though, we will focus on watching the calendar, knowing that it is quickly approaching. We will focus on one day maybe having a puppy, and on all the things we can bring with us so that she will be occupied during the many weeks in isolation. I will be blogging again so that all of our friends and family may follow along and someday Katlyn will be able to read as well. And to you praying type-- your prayers really have carried us through all of this so far. Please pray that my daughter will soon be healthy.