Ha ha!!! See what being surrounded by four walls for so long can do to you. Ha ha!!! Hope you all get a good laugh at John's expense. He was making Katlyn laugh her pants off.
So the PEG ADA is all done. No More, hopefully ever again. That was on Tuesday and before the last injection Johnathan and I had a very exciting meeting. It was all concerning Katlyn's Gene Therapy. The doctor's went through, with great detail, what will take place over the next few weeks, all the possible risks associated, and of course the benefits. John and I had been through all the information 1 million times. There was really no new stuff. All along as we were learning stuff, we'd ask all those questions. We did have a few basic questions, but that was it. We were ready to sign. The feeling I got when I sign my name on that consent form. I can't even explain it. It was so overwhelming. i talked to John about it and he said it was the same for him. We have waited so long for this and finally it's happened. I looked at him before we signed the consent form and I said "we've never got this far before," referring to the many close calls.
It is going to happen though. On the 18th the harvest will take place. The cells then have to sit in the lab for 120 hours with the viruses injected with the ADA enzyme. During that time, Katlyn will get her chemotherapy. We are so thrilled. Finally!!!! I know I can't stop saying that, but finally!!!! We don't expect Katlyn to loose her hair or become very sick, which usually happens with the chemo (our poor little buddy Cole was feeling sick but everyday he seems to be feeling better and better. He doing great!!!!). So then they'll inject the cells back into Katlyn and after that we'll just wait for the numbers to come back. After the chemo, Katlyn will be anemic, but the doctor's say this is typical and shouldn't last.
Also her lines stop working. Yesterday we had just put Katlyn down for a nap when the doctor notified us we were going to the OR. So we had to wake her up and take her on a trip. We didn't have to sedate her or anything. We just kept her busy with our beautiful singing voices. They slip a wire through her line and put TPA in again, this time a lot more and we left it in all night. This morning we had to draw it out and it is running smoother than the day she got it. It's great.
She is doing so good. Basically all she does from dawn till dusk is run around. She is so crazy. She's practically running now. And I'd say she is learning a few words a day it seems. Just like a little parrot really. We're doing good too. Tonight's my night at the Inn because I have a follow up doctor's appointment tomorrow regarding my kidney stone. I'm sure everything is fine. I actually feel perfect.
Oh just to let everyone know. CBC wants to do a story about Cole and Katlyn together. I will call the lady today and hopefully get some more details. It's so exciting to do something like this with Jenn, his mother. I love them so much. I'll keep everyone posted as to when things will happen.