Katlyn did get her line taken out and the site is looking very nice. The new skin has grown over and it doesn't look like anything is infected. The nice thing is she will be able to take a normal bath now because there's no fear that her dressing will get wet. She has had a couple of baths already and loves it so much. We thought that her new line would be a portacath but it's not going to be. It'll be a broviak (unsure of spelling), if I'm not mistaken. Everything is still as scheduled for Friday. She will need a CBC done on probably Thursday to see if her neautrophils are still above 1500. She's off that PEG ADA, so this does make us a bit nervous. If her counts are not at 1500, we will not be able to go ahead with Friday. I don't think that will happen though. Apparently the PEG ADA is supposed to stay in her system for about three so technically there shouldn't be a problem. But you all know trouble we have had with her neautrophils and probably why this makes us a little nervous. It's really funny how much worrying a person will do about things they shouldn't have worried about in the first place. I truly believe that a person shouldn't worry about something unforeseen in the future. People are so crazy. We have no control and yet we will worry about pretty much anything. Even if it's out of our hands entirely. We have no control.

Mother's day was fantastic. Katlyn drew me a wonderful picture right on the wall at the National Institute of Health. Ha ha!!! Still it was pretty cute I must add. I also a very lovely card by her too. I think it's incredible how she runs around this room nonstop with a notepad in her hands and either a pencil or crayon. She will honestly draw in that all day long. I will defiantly be keeping that little notepad for her.

Katlyn is doing very well though. We really have no concerns with her other that when she tries to stick a crayon in the power outlet. What a little bugger!!!!! I love her so much!!!!

So it's looking like that interview with Jennifer (Cole's mom) myself and CBC radio will be tomorrow morning at 9 our time which would be 8 a.m. AST (the time at home). So don't miss it. I'm so excited to be taking apart in something like this with one of my closest friends.

So Katlyn's line will be coming out. Her doctor left us with a very difficult question yesterday to ponder through the late hours of the night. Yesterday I think he was in favour of Katlyn keeping her line and the doctor who put the line in thought it should come out. SO I think not only John and I had a lot of thinking to do, but Katlyn doctor as well. This morning he told me that he did have a recommendation. I thought for sure he was going to let me know that he thought we should keep the line in. See the thing is Katlyn's line is completely inactive since the last day of the antibiotic,which was a week ago. It's usually not a big deal to keep a line in with it hep locked. However, since Katlyn is immune compromised, a hole in her neck can be threatening. If it should clot then there's a risk of infection, well there always is for her. Beside we don't want to take any risks. Should Katlyn get another infection, treatment will be again postponed. And none of us want that. We just want our baby girl better. So the doctor was actually on the same side as us. It's so nice when everyone is on the same boat.

Oh yeah I wanted to mention that the dentist had come to visit Katlyn. At first he wasn't completely lost as to why she had discolouration on her teeth, but the I mentioned that we use chlorhexidine in her mouth everyday. He said that he believed that the chlorhexidine is the contributing factor. Because most of the teeth are smooth, you wouldn't see any staining. But on the rough parts of the teeth, the chlorhexidine will stay in the little grooves. He said by brushing her teeth after every single meal, we can get rid of the discolouration. And he also mentioned that we should brush her teeth with a regular toothpaste containing fluoride. So we were in a bit of a pickle. See the reason why we started the chlorhexidine in the first place had to do with germs. A toothbrush is a great source for germs. So what to do. We decided to use the same sponge applicators that we use for the chlorhexidine for the toothpaste as well. The are nice and soft and we get to use a new one each time. We have been doing that for about a week and the discolouration is almost gone. YEAH!!!!!

The little boy that did the therapy before Katlyn will be leaving in a couple of weeks. I wanted to talk to his mother so badly. I mean basically her son is the footprint for Katlyn and seeing him outside the hospital running around playing makes us very excited. I had so many questions for them, but there was one problem: we don't speak the same language. They are from Argentina and speak only Spanish (no English at all) and the only Spanish I know is from Dora the Explorer, definitely not enough to get me by in conversation at all. So I spoke the the manager on duty and let her know how badly I'd like to talk to his family. She ran upstairs and got her and decided to translate for us. IT was so nice of her. I found out lots of things about her child and his treatment. My favourite part is where she told be that we have to have hope and faith because we are going to get through this and our daughter is going to be okay. She was so nice and her son is doing so well. It's very nice to see that. It was so great to talk to her. I told her I would be saying "Hola" when I saw her in the halls.

It's looking so far like the interview on CBC radio will be on Tuesday morning at 9 a.m. our time which is 10 a.m. AST (time at home). It's only tentative right now but I'll keep everyone posted as soon as the plans are finalized.

All is well though. I went to the doctors today and the stone is completely gone. He sent the stone for analysis and that should take about a month to tell me why I had a kidney stone. Things are great though. We are very excited about the harvest being a week away. Finally.

So much great news

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.

Thank You and Bucket Head

Things are going very good today. I didn't really have any new news at all so that's why I haven't written anything. Now for the news. I got my stent taken out today and now I feel much better. I had no idea how big that thing was. It was like the size of a sharpie marker in diameter. No wonder I felt so uncomfortable. The procedure was pretty simple. I was in the office all together for maybe an hour, from start to finish. They didn't need to put me to sleep, so that was a bonus. The actual removal wasn't the most comfortable thing in the world, but now that it's out I feel so free. I really do feel so much better. When I got back to the hospital I also passed a lot of stone. The doctor told me the stone was like the size of his pinky finger, a large pinky finger I might add, so like my index fingernail. This got me a little worried because I thought I was doing good, but I became very uncertain if I had passed that much stone. He said it wasn't anything to worry about because if they broke the stone up some of it could have been like dust particles. However, after today I am now sure there is no stone left in me. I will know for certain on Friday at my doctor's appointment because the x-ray won't lie. So all is good with me, except for being really tired.

As for Katlyn, things are really great. Today she started to say thank you. I love it. She's always handing us things and saying "Thank you, Thank you." I was also quite impressed when a volunteer from the Children's Inn came to visit and bring Katlyn a bouncy ball. As soon as she saw it "Thank you, Thank you." What a little cutey. She also has this new thing where she puts here bucket on her head and runs around laughing and banging into things. It really is something.

She is now done her antibiotic and tomorrow will be her last injection of PEG ADA. Thank goodness. One less thing to worry about. The gene therapy is still for the 18th as planned. We have a meeting tomorrow at 12 p.m. where the doctors will go over the procedure in very thorough detail for us. I am so excited because I just want to get started so that we can get Katlyn better and home where she needs to be. So we have to try and get Katlyn's nap for that time. Yeah, I already know it's going to be a huge challenge to try and coordinate her nap for that time. Ha ha!!!! You can't really coordinate anything when it comes to Katlyn. That girl does what she want when she wants. We try to say no to her and stop her from running wild, but once she has her mind set....well, that's just it. She has her mind set and there's nothing we can really do about it. Oh, what a girl. We are really going to have our hands full.

As I am writing this, John and Katlyn are reading a book and another word just slipped out. Another new for today and it's "tractor." She our little smarty pants. So all is good in Katlyn's world which mean our lives are great too.

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!!!