Friday, May 4, 2007

Everything seems to be calming down quite a bit now. I had my lithotripsy on Tuesday and that went very well. It actually went a lot smoother and faster than I expected. The stone shattered no problem and although I have got a couple of spurts of pain since, nothing compares to the pain I had been in. Basically I was like a walking zombie. I could even walk at a normal speed at all. Everything was in slow motion, and basically I just laid around a lot wishing all the pain would go away. Now I'm passing the stone so it's almost over. It will be all about prevention after this. I will always drink plenty of water everyday. So on Monday I go back to the same surgical center to get my stent removed and next Friday I have a follow up appointment with the urologist and he'll tell me if the stone is all gone. I'm pretty sure it will be.

So enough about boring old me, let's talk about the most important little girl in the world, Katlyn. She is doing very well. Today is her last dose of antibiotics and that makes us so happy. It's just no fun for her to have to lay around hooked up to an IV. She got IVIG yesterday and that was no fun at all. She had her afternoon dose of antibiotics, about a fifteen minute break and then had to be hooked up to the IV until about 9 p.m., and then after that at 10 p.m., she had another dose of antibiotics. Basically, Katlyn was hooked up all day. It was very stressful for all three of us, but especially Katlyn. So we got a little bit of information about Katlyn and her Gene Therapy. She will stop her PEG ADA on Tuesday and then on the 18th she will go to the OR for her harvest. This is where they will take Katlyn's bone marrow and they bring it into the lab and expose it to the viruses. This process takes 120 hours. During that 120 hours Katlyn will have an anti seizure medicine, just as a precaution for the chemo she will have. Then she will have two very low doses of chemotherapy. During this time a lot of blood will be drawn to see the effects of the chemo. All the nasty things that you hear about chemotherapy should not take place. Katlyn shouldn't lose her hair or feel nauseous. The chances of Katlyn reacting badly to the chemo is quite slim, so we're not expecting those really nasty things at all.

So Katlyn has been unofficially accepted for the Gene Therapy. Basically now it's just a formality. We have to to have a bunch a meetings to go through all of the risks and what to expect and then of course, sign the consent forms. I guess it's going to be quite the process. They have to make certain that we understand everything and aren't being influenced by the doctors to make our decisions. So a third party will come in also and meet with us to make sure. All I can say is finally!!!! We are going to get our girl better. We have been through hell and back and still have a very long journey ahead of us, but we are finally going to get Katlyn better. Yeah!!!!

I think we are really starting to adjust to this hospital now. Things are a lot different than the IWK. We're okay though. Right now we're just so tired from the past couple of weeks. So now we have to try and get our rest caught up before all the craziness starts again. I just can't wait until we get Katlyn better and can bring her home.

I hope everyone enjoys the pictures of Katlyn eating her very first cake. I'd say she had a ton of fun!!!