Monday, May 28, 2007

Thes pics are from chemo day when we didn't know if things were going to happen. So Katlyn was a ninja that day.
These are pics I took of transplant day. She's so pretty!!!

We just have to wait until Katlyn's doctors is okay with the pictures going on her blog. His in them because he administered her news cells back in her body. Sorry about the delay but I will get them on here as soon as I can.

Saturday, May 26, 2007

Katlyn got her Cells Back!!!!!!!!!!!!

Yeah that's right. Today was the day and it happened. She finally got the treatment that she so desperately needed. We have waited so long for this moment, and the funny thing it it only took about 40 secs. We did get a video and some pictures of it, but I'm going to have to post them tomorrow because I left the camera at the hospital and I'm at the Inn right now. Today was such a great day, very nerve racking mind you. Like always there's a story behind it all. The cells were scheduled to be ready around 1:30ish and we were just patiently waiting to see her doctor because that meant it was time. Well when we saw him at 1:30 he informed us that they have to do some testing on the cells before they give them back to Katlyn. The results were all done and they were just waiting for them to be printed out, and wouldn't you have it....the computer crashed. I couldn't believe it. I asked him if he was joking. Of course he wasn't joking and it would take about an hour more. I'm telling you, we were watching that clock like crazy. At 2:30 I started to get really nervous. I kept watching the window and saying "where are they. They should be back now. What's going on." After what seemed like forever (because at this moment I'm sure our lives were going in slow motion) the doctor appeared in the window waving a bag with a huge syringe in it. The cells had arrived.

So they came in and injected them in Katlyn's line. After they were done Katlyn even said "thank you." That is exactly what we were today. Very thankful. Finally. I don't think I could even come close to explaining how much today meant to us. This really is a start of a new life for Katlyn. Now instead of waiting for something to happen we can now wait for Katlyn to get better. I find that I'm thinking about home a lot lately and John never stops talking about it. Now I don't have to feel like crying every time I think about us going home or Katlyn living a normal life, being able to go outside or being able to kiss her. Now we can get excited about it because it's now going to happen. I'm not sure how long it's going to take for the counts to start going up but I have a feeling it's going to go great. It's now done and all we have to do is wait and look forward to the very close future we have. WOW!!!! Katlyn is going to love it. She is going to love life so much. She already does and her world right now is a little hospital room. She is just going to love it. I can't wait to see her smiling face when the wind blows through her hair, or to give her a kiss.

Speaking of kisses, Katlyn is now blowing kisses all the time. It is so cute. She does it at just the most appropriate times. I love it so much. We did have a very good day today. We decided that because today was a very big deal and we've been waiting for this day for so long, we would have a party. We partied all right. We had balloons, cake (courtesy of the NIH), presents, a party dress for Katlyn and lots and lots of smiles. It was so much fun. We only thought it was appropriate to have a huge celebration on the day that's marked, Katlyn's get better day.

I will post pictures and the video tomorrow just as soon as I possibly can.

Thursday, May 24, 2007

Another Crazy Day

So Katlyn's chemo was supposed to start today and before I scare everyone, I just want to let you know it did, but it almost didn't. This morning Katlyn was supposed to start her chemo at 9 a.m. Well, 9 came and went. Her doctors were worried because Katlyn has been having very loose stools and they didn't want to administer chemo if she had an infection. They asked me a million questions about the stool. After some discussion they felt that there were many other reasons why Katlyn could have loose stool besides being sick. So they took some blood and checked to see if there was any inflammation in her body. I thought John and I were going to go crazy. The doctor said that everything is very time sensitive and if we couldn't do chemo today we would have to put her back on PEG ADA, wait three months and start all over (even the harvest would have to be done again). I'm telling you our stress level was running really high (that isn't even coming close to the right description of how we felt). We were scared.

So anyway, that test came back in a normal level so there was no inflammation in her body. They also checked her stool for a few things and that all came back fine. They tried to do a urinalysis put because of all the diaper cream and the fact that it was collected on cotton balls, the test came back inconclusive. Mind you Katlyn was taking a nap after only getting 4 hours of sleep through the night, so we were desperate to get what needed to be done done, but try to do it without waking her. If she would have woken, it was necessary we know.
So when the UA came back, the doctors decided that putting a bag on her wasn't worth it. It would just make her skin break down, and they already felt as though it was unlikely that Katlyn was sick (same as John and I). So the chemo was back on schedule.
It started a lot later than was planned but it's all done now. She did great. She didn't give any sign of feeling yucky or anything. Thank GOD!!!! So now we just wait until Saturday when her cells will be injected back in. We are so excited. Finally!!!! Katlyn is going to have a new start to her life. We are thrilled. So now we just have to be super careful about germs like we always are. And the chemo drug seems to be hurting her when she urinates, so we have to stay all over that. That should be all through with like 24 hours though.

Monday, May 21, 2007

What a Day

I'd like to first off start by saying that Katlyn is okay. She is doing very well. What a day is right. We started off this morning not really knowing for sure if anything was going to happen or not. I think Johnathan and I held ourselves back because we were so scared to be let down again, which we have so many times. I think we asked everyone we saw if we were still okay. So anyway we brought Katlyn down to special procedure where she was scheduled to get her line put in. The doctor showed us what Katlyn's new line would be. I'm not sure the name of it but I know that it is a very new line. Apparently within six weeks Katlyn's tissue will grow around this little cuff inside, down the line a bit. That's great because it means things will be sealed off, so there's a lot less risk of infection. It's a lot like her other line except the lines are a lot short on the outside, which is a plus when those stubby little fingers what nothing better than to get a hold of the. I also must mention the line is also very pretty, as far as lines go. It's a double tunneled catheter and need I mention the reason I think it's so pretty is because it's purple and red. Yeah purple and red.

So the had to put Katlyn asleep so they first gave her an oral anesthetic which just relaxed her. Next we had to choose who would go in the room for Katlyn to go to sleep and John picked me because he was through it the last time and it still bothers him. I went in the room with her where they gave her a mask and she freaked out a little bit, but it was nothing like what John had described to me. I think I attribute that to the anesthesiologist. She was fantastic. She was signing Old McDonald Had a Farm to Katlyn and she fell asleep. She also kept reassuring me that everything I was seeing was perfectly normal, and then we were off to wonder what if anything would happen after the line was put in. Everyone kept coming in the room and telling us things were still a go ahead, but I really had a hard time to believe anyone. We were taking a walk because the line procedure was going to take an hour and a half and just our luck their was a code red on the 7th floor. I looked at John and I know we were thinking the same thing. Can you imagine the building getting evacuated at a time like this? Geez. The things that we have gone through to get here, it's a wonder it didn't happen. All was clear though and the code was off so we could stop holding our breathes, but just barely.

So the line was a success so the next stop was the OR. I was still waiting for someone to cancel on us or something weird to happen. We were sitting in the waiting room and the doctor that had been sick on Friday came and met with us. He was perfectly fine today and he told us that if it was any other patient he would have done the procedure, but because of Katlyn's condition, he wanted to especially careful. We let him know just how thankful we were. So he explained to us what was going to happen. I know I was still not letting myself get excited. So the came out several times throughout the procedure and it wasn't until everything was done that Johnathan and I allowed ourselves to get really excited. I mean really happy. Finally.

There was no problems or complications throughout the procedure. So the next thing we had to wonder was if there was enough cell collected. In total they took 200ml of Katlyn's bone marrow. They needed a special type of cell called CD34+. These cells are special because they can basically serve any purpose. They can transform themselves into any type, meaning they can carry and hold the ADA enzyme. Hey, I'm not a scientist. I have no idea if that made any sense, but that's how I understand it. SO the needed to collect I believe the doctor said 16 million of these cells. Well this evening they confirmed for us that things look good and they collected more than enough cell, about 44 million. YEAH!!!!!

So tonight we had to take some blood from Katlyn to see where her hemoglobin was at. She had been 14 as of Friday and since the procedure has dropped to 8.4. There was some talk about doing a blood transfusion but her doctors have decided to hold off and monitor her closely. They believe she'll come back up on her own and the risks right now outweigh the benefits. They don't think that a transfusion at this time will have any benefit. If Katlyn should drop below 7 then we would do a transfusion. But she'd not going to!!!!!! I can feel it.

So our girl is doing very well. I have a video of her walking in a very drunkenly manner. Haha!!! She insisted on walking and as stubborn as she is I know she was going to get her way. I'll post it tomorrow. For now I got to go to bed because I'm so beat. This day has been so long.....but great at the same time. So Katlyn will get 3 doses of an anti-seizure medicine just as a precaution for the chemo, which is standard. Then on Wednesday she'll get 2 rounds of very mild chemo 6 hours apart. Don't worry I will post as soon as I get a chance.

Friday, May 18, 2007

So I just wanted to let everyone know that unfortunately the procedure was not able to be done today. It has been postponed. One of the hematologists was sick this morning and didn't want to risk Katlyn getting sick, which we do appreciate. At the minute they tried to contact another doctor, but were unable to get the procedure done today. The good thing is though, Katlyn is not the one sick. If that doctor would have worked with Katlyn and she got sick, we'd have bigger problems. The harvest is rescheduled for Monday.

Which isn't really that bad. If you could have seen the three of us today, like zombies running around the hospital room, you'd understand. This way, we will be able to get her rested again. I'm telling you though, when the doctor came to talk to us this morning and said he had bad news, I swear my heart stopped beating. I had no idea what it could be, but I didn't think it was something like this. At first we were really let down, but we're okay. After a few minutes, we realized that it was for the best anyways. We really can't have Katlyn sick.

We're all great though. I actually found a McDonald's here today and a grocery store yesterday. Some places here are so expensive and when you find one with a little break, it's exciting. Besides, I haven't had McDonald's in ages. I actually went across the NIH campus to the Naval Hospital. Their base has a McDonald's unbeknownst to be. Ha ha!!! It wasn't that far away at all. Katlyn is great though. John and I were actually just discussing how Katlyn doesn't even have a runny nose anymore. It has all was run, but sometime lately, it just stopped.
I have been trying my hardest to get on here and write for everyone following Katlyn, but it seems as though a lot has been stopping me. The computer in her room isn't working so it makes it so difficult. Right now I am writing at light 5 a.m. Katlyn can't eat anything and she just happened to waked up just after her deadline to eat. Well it took me until now to get her back to sleep. I don't dare go in her room as I may wake her up, so I'm in the playroom just down the hall. The way I see it is if I'm tired...well so what, but if Katlyn is tired that's not fair plus she will only feel hungry.

So the big day is today. We did have a couple of tests left to get done before we knew for sure if we were going to go through with the harvest tomorrow. Her neautrophils were one of the,. We were so nervous. I just couldn't take it. So her blood work was done yesterday after waiting for what seemed like forever for someone to come and draw blood. Well when they did come they got what they needed in one poke. YEAH!!!! Anyway, late afternoon yesterday the doctors came to us to let us know that her neautrophils were 2200, despite being off the PEG ADA. I can't even put into words how relieved we were. That's all. She's ready.

So at 7:30 today Katlyn will go down to get her central line put in and her bone marrow harvested. Finally. She will be asleep for the entire ordeal, and we should be back in her room around 10:30isher...Haha!!! There will be three doctors doing the harvest. I guess it's a lot of work. The have to be able to drill many holes of bone marrow without removing the needle from her skin, so they will take turns. She will have it drawn out of both hips and she will have 5ml/kilo taken. She's 13 kilos, so that works out to be 65ml of bone marrow. Katlyn may be in some discomfort because of the amount of hole in her hips, but we're not even expecting that. She's a tough little girl. We are prepared, we just wouldn't be surprised if she was running around as soon as the drowsiness goes away.

So then they will take Katlyn's bone marrow to the lab, where it will be exposed to the manufactured viruses (with the ada enzyme in them). So on Sunday, Katlyn will get two rounds of Chemotherapy, six hours apart. Katlyn should not lose her hair or feel really sick. It's such a low dose that we're not expecting all those horrible symptoms. The doctor said she may get a little drowsy and upset stomach for the day, but only because of the med and the high volume of blood that will be taken. Then on Wednesday she will get the cells back and it's just a waiting game from there. I'm just glad the waiting game isn't going to be to get her treatment anymore. This time it's going to be to really get her home. YEAH!!!!!

She is doing great though. She has perfected walking so much that she now also walks backwards. She also says "thank you" consistently with us handing her stuff. She is such a doll. We really love her so much and just can't wait to get her better. It's really going to happen and Katlyn is going to do great.

Oh yeah the interview with CBC, Jenn and I can be found at this link. Please check it out. I can't because I'm on a Macintosh and it just won't work. I'll have to wait to get to the Inn, but I'm sure it's great.

Monday, May 14, 2007

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.

Friday, May 11, 2007

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.

Thursday, May 10, 2007

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.

Monday, May 7, 2007

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.

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!!!