Wednesday, June 27, 2007

Look, a little teenager already.

This place is little crazier this week compared to how it has been since we first got here. Apparently a lot of the children's appointments are scheduled during their summer break, and since school is out, this place is swarming with children. I find it kind of overwhelming. We're just used to everything being pretty quiet around here, especially on the weekends. However, as one of the nurses informed us last night, that will no longer be. I just can't wait until it's time to go home. We are so homesick and we just want Katlyn better. Even if we can't go home home for a bit, that's okay. I think we'd feel better being closer to home anyway.
Katlyn is doing very well. She has had a huge amount of energy in the past few days, which has to be a good sign. Her easting getting back on track also. It's hard to say if she was a little off because of the chemo maybe, or because of her age or maybe she's using it as a form of control. Who knows. All we know is that Katlyn still eats well no matter what and it seems that she's been eating better and better everyday. She was weighed today and still weighs the same as when she first got here, 28 lbs. That is exactly what we wanted anyhow. She needed to catch up to weight with height and that's exactly what she's doing now, plus she's running around like crazy.
So Katlyn's doctor told us today they were going to investigate this elevated heart enzyme further. They are not going to do anything to compromise anything for Katlyn in anyway, meaning doing anything invasive. They just want to be sure it's not anything that's being overlooked. So she will have a consult with a geneticists tomorrow, where he will ask a load of questions, examine Katlyn and order specific blood work. They just want to make sure there isn't anything wrong. There is just so much that they don't know about Katlyn's illness, and where at a research hospital, they want to investigate everything they possibly can about Katlyn. We appreciate it too. Her doctor said this enzyme had been elevated when we first got here and then it went down, and again back up after the gene therapy. He also said that in a normal healthy person they wouldn't be concerned at all, but because Katlyn has ADA SCID, they just want to be sure everything is okay. So it's just a safety measure.
Oh yeah, I also wanted to let everyone know that since we have been here I have found four 4-leave-clovers. That's right, four. That's got to be lucky. They are all in Katlyn's window in her hospital room. It almost seems that when we need it the most I just happen to look down, and poof, there's a four-leave-clover. I know, I know, but you must admit it is pretty lucky. I have found eight four-leave-clovers to date. Seven of those since we've had Katlyn. She is going to be okay. I just know it.
I have Faith.

Monday, June 25, 2007

I know I saw that in my book somewhere....
The birds are so beautiful outside, and look at the trees.........
Hi Dad!!!!!
Hehehehe!!!!!! I'm back here!!!!! Surprise.

Today is a great day. Katlyn is doing very well. She has so much energy today and it's so great to see her like that. It's not as though she has lack of energy any other time, it's just that today she has so much extra. That's just wonderful. She is so happy. Daddy has been introducing her to a wide range of music over the last couple of days, and by watching her singing and bobbing her head to Thunderstruck by ACDC, I'd say Katlyn is really enjoying herself. She's such a doll. Yesterday I found her one of those basketball nets that you can put over a door frame etc. Well, we set it up today and Katlyn had no questions about how to use it. She took right off and is playing with it very nicely. She just seems to figure all of these things out on her own. She's really quite amazing. She healthy.
So her blood work is going to be more spread out and will be done every Tuesday and Friday, except for today because she was checked yesterday. So, we'll talk neautrophils on Friday and I feel optimistic that her numbers will be up. I think Katlyn is on the rise now. It was driving us crazy checking them ever day because she would bounce up and down of course. Now that we're checking them less frequently, I think we'll get a better curve.

Do you want something?
me and my daddy
Yeah right!!!!
Daddy and Katlyn dancing
So cute.
Yeah, that was fun!!!

Katlyn's neautrophils were up a bit yesterday to 393 and today they were 333. So things are looking a little up. We are optimistic that things are going great. So today is day 30 post transplant for Katlyn and for now on they will stop taking Katlyn's blood everyday. Instead her blood draws will be twice a week. I think will make things a lot easier for everyone. Instead of watching the numbers so closely everyday and seeing her bounce up and down so much, this should give us a better idea of where she really is.
Katlyn is doing very well. Her platelets and haemoglobin's remain at normal level and her white blood cell count seems to be rising, and as a result her neautrophils are rising also. Her liver enzymes are monitored in two ways and in one way they see the levels have come down after being slightly elevated and in the other they remain slightly elevated. Also, one of Katlyn's heart enzymes is slightly elevated as I believe I mentioned when we first came her, but her doctor feels as though it's nothing to worry about. He is going to consult a heart specialist once again and get his input. There ways of seeing why this enzyme is elevated but the means are invasive, so they would like to stay away from doing anything that may upset the balance of a healthy child. The doctor said if he saw this enzyme elevated in say John, then they wouldn't think twice about it. They would conclude that it wasn't worth investigating because Johnathan is a perfectly healthy person and the particular enzyme elevated just slightly isn't enough to indicate there's a problem worth investigating.
Mind you Katlyn is a special case because of her condition. They just want to be overly cautious, at the same time they don't want to jeopardize her in any way. All the tests that they have done so far indicate that Katlyn's heart is perfectly normal and there's nothing to be concerned about. All in all, they just have to make us aware of everything they know about Katlyn. However, they feel that things are great and we shouldn't investigate this anymore at this time and they're just going to get another opinion to be sure.

Saturday, June 23, 2007

Sorry I haven't written anything in awhile. There just hasn't been any new news. Katlyn still maintains a neautrophil level around 240. Each day we hope to see her counts go up, but so far nothing has happened. We are being very patient. It is hard because we are just so close and just want our baby girl better. She is doing great though. No issues at all other than her neautrophils being a little slow, which, if you follow Katlyn's story, you know has been an ongoing issue.
The doctors feels that things are good though because her other numbers look great. They also see her neautrophils fluctuate a little bit, which indicates some activity. They feel as though if things were not working then her numbers would just drop completely and wouldn't come up at all. Right now they don't really know for sure what is going on or how long things are going to take, because they are just learning that some ada scid children have problems with there neautrophils (why some and not all, they don't know). This is how things are when you're participating in a research study. Not all things are known, and they learn a lot from Katlyn.
For now they are keeping a very close eye on Katlyn's numbers to make sure she doesn't get too low. Her blood is checked everyday and everyday John and I anxiously await those numbers. Any day now we should start seeing her go back up. We have no idea how long it is going to take but Katlyn is healthy otherwise and happy and as long as we can keep her that way, things are great. It will be so nice when we don't have to worry as much though, and for sure that day is getting nearer with each passing day.

Tuesday, June 19, 2007

Since the last time I have wrote Katlyn has been doing nothing but dropping with her neautrophils she went all the way down yesterday to 202. Today was a wonderful day. Katlyn made a big leap up to 360. We really hope this is where she start to keep the uphill direction. Her doctor seems to believe that it is a lot bigger jump than in the past and that the chemistry in her body is actually changing. I really think he's right. Today if Katlyn's number dropped again and she was 200 or less, they were going to give her some GCSF, which is a bone marrow stimulator that would cause Katlyn's neautrophils to shoot up. They don't want to use it if they don't have to because they are not sure if that may slow the process of cell growth long term, or have any other effect. Of course they were going to use it if Katlyn's numbers dropped too low because they didn't want her to be in danger, which of course we're thankful for. But her numbers went up and the G was called off. YEAH!!!!!!
I woke up this morning after Katlyn and I had a really great night's rest and I just had this overwhelming feeling that her numbers were going to be better.
We hadn't really noticed that Katlyn was acting a little off until we saw her go today. She felt so great and had so much energy. It was so wonderful. We just love to see signs like that, because that the first sign that something is going great. That girl didn't stop all day. She was ripping and roaring, singing and dancing all day long until bed time when she drank 4 ounces of milk add passed out. Usually she drink at least 8 ounces, but I'm telling you she had worn herself out.
I hope that she gets another great nights rest tonight and feels fantastic again tomorrow.
Katlyn is doing great. I really believe that we are heading upwards now.

Friday, June 15, 2007

Baby in deep thought

Hmmmmm....I wonder how long it will be before I can go to med school.

Just to let everyone know, Katlyn's neautrophils went up a bit today. Yesterday she had dropped to 309 and today she was 359. I guess this is exactly what Katlyn is supposed to do anyhow. Although she is neautrophenic and it's pretty stressful right now going through that alone, she needs to have her counts drop like this. This way her new cells will have an unfair advantage over her old cells. That is exactly what we want to happen. So it's only a matter of time and Katlyn will not be neautrophenic anymore. The great thing about it is that when she goes up this time it will actually be her doing it and not PEG ADA. Any progress that we see from here on out, will the gene therapy. We are so excited because we know that our baby girl is going to get better and it has already started. There is no more waiting for things to get done anymore. The procedure has been done and it's only a matter of time before Katlyn's immune system is fully functioning. The doctor said we should she lymphocytes in about 6-12 months after the therapy. But just to put every ones mind at ease, Katlyn is doing what she is supposed to do.
Oh yeah, I also wanted to tell a very cute story about Katlyn today. Katlyn was having her nap and she was hooked up to her IV, because they switched one of her oral medications to intravenous because her liver enzymes are slightly elevated (which isn't at a dangerous level. A lot of things could have cause it ex: chemo. They just wanted to changed her medicine to err on the side of caution.) Anyhow, while Katlyn was taking her nap Johnathan and I went to the Children's Inn for a little bit. Well when I came back Katlyn's pump was beeping and I could see the display saying air in line. Well it woke Katlyn up. So she sits up and reaches out of the bars of her crib and hits the restart button to quiet the machine down. It was pretty impressive. There are tons of buttons on the machine and it wasn't even like she was pressing them all. She just hit one. That's my girl. I think she might work at the IWK someday.
All is good though. Katlyn is doing fantastic.

Tuesday, June 12, 2007

Thought I'd throw in a few more pics because I haven't been writing on here as often as I would like. I do have a very cute video at the hospital to post on here and I will just as soon as I get a chance.
Sometimes she just looks at me like, "mom what do you think you're doing.
Oh, Happy baby!!!!
Me and my baby girl.
This is a picture of the NIH Clinical Centre
This is a picture of the Children's Inn where John and I take turns sleeping.

Katlyn has been doing very well but her neautrophils are still dropping. Since the last time I wrote Katlyn dropped to 460 on Sunday then up to 569 and today down to 360. I guess she has to drop before she goes up. I just wish that she would stop dropping already. It really makes us nervous for her to be below 500 because apparently 500 is what they call the safe point. So I know that we are extremely careful anyway and it's probably hard to believe that we could get much more careful, but we could and we have. I bet there may be a huge sigh of relief when we go home, because of all the hounding we have been doing. We are just trying to make sure things are done the right way, and Katlyn isn't in danger because someone was careless. We are her advocates, and we need to protect her the best we can.
She is doing great though. Because her counts have dropped, we have to check her temperature every four hours, and there hasn't been a problem. She is doing very well. I'm sure that she'll stop dropping any day now and then we can get ready to go back to the IWK.

Friday, June 8, 2007

Blood work today

So everything went fine with Katlyn's blood work today. She did exactly what her doctor said and still went down. She is now at a neautrophil level of 560. That is down but she is still good. The chemo does play a toll on their white blood cells, so they were expecting this. He said he doesn't expect Katlyn will drop much more if she does at all. So, they will be collecting blood over the weekend each day, for sure to follow her. That way they can keep a close eye on things. So her platelets are still great and her haemoglobins are back to normal so she is no longer anemic. YEAH!!!!
Katlyn is really doing great. The doctor said that it is really hard to tell for sure exactly what is going to happen, but he thinks maybe her neutrophils will come back up to where they were before she got the chemo in about the same time it took them to go down.
The other child is having some problems with his neautrophils and the doctor thinks it may be due to either a viral infection or a certain antibiotic, so he will be avoiding that family of antibiotics.
Things are great though. Katlyn has given up on having a nap I think. But the nice thing is she's in bed a lot earlier than midnight now. I knew it was only a matter of time before that happened anyway.

Thursday, June 7, 2007

This picture is Dr. Sokolic, Katlyn's doctor holding those beautiful magical cells that are going to make her better
Katlyn wearing her lucky Dora hat during the procedure.
Dr. Sokolic injecting cells in her.
By the way, it was rock-paper-scissors over who had to video tape and who got to hold Katlyn, and I lost of course. The moment was just so surreal. Katlyn now has two birthdays.

I'm so sorry it took me so long to get this video and pics on here of Katlyn's procedure. I just had to make sure that her doctor was okay with me putting it on here for everyone to see, since he's in it too. He was away for awhile, but everything is fine. So here you all go. The actual procedure took about 40 secs. Imagine that. The amount of time that we have put into preparation and it only took 40 sec. Well I'd say that 40 secs was one of the most important 40 we'll ever know.
As for an update on Katlyn I just needed to tell everyone that she is doing fantastic. The doctor's were expecting one thing to happen and hoping for another and Katlyn is doing more than they can hope for. She is great. Her neautrophils as of Tuesday were 820, which means that she had gone up. Now she was supposed to get blood work done today but they switched blood draw to Fridays. So we'll have a better picture tomorrow. She had some research blood drawn this week and there was some great ADA activity for this stage, more than they were expecting. So the doctor told me that according to the protocol they have to keep her here until day 30. If by that time she has no problems with her platelets (which she hasn't, knock on wood), her neautrophils have to be above 500 for at least 4 blood draws and her neautrophils can be declining anymore, than she will be able to go back to the IWK. YEAH!!!!!!!!!!!!
I can't wait. It's a lot closer than we anticipated and we are so excited. So our girl is doing fantastic. The doctor actually said that what they are seeing is textbook gene therapy. YEAH!!!
Thanks everyone for all your praying and kind words. It definitely makes this time a little easier knowing we have such great support, not to mention that we have little trooper Katlyn surprising everyone.
We still have a long road ahead of us, but we are definitely making progress.

Tuesday, June 5, 2007

So Funny

One of the most hilarious things I have ever saw just happened. Katlyn has one of those plastic lawn chairs, you know the ones. They are completely plastic and all one piece. Well hers is the same, only a lot smaller. Well, I was sitting hear clearing up her supper that she wasn't interested in eating when I heard some grunting noises. I looked over and Katlyn was sitting in front of the mirror with this chair over her head. She had her head right where the back and rest of the chair meet, yeah the arm meets there so it's like a big hole in the chair. Anyways I sat there thinking okay Katlyn you can get out of that. Come on girl. So she tried and tried then she got really upset so I went over to investigate and help her out. The holes are pretty big so I didn't really think it was going to be a problem. Well I pulled, and I turned her head and pulled a few times and realized she was stuck. I hit the nurse call button and when the nurse asked what I needed I had to say "Katlyn has her head stuck in a chair and I need some help. She asked what I said so I said it again and she said she'd be right there.
By this time Katlyn was getting pretty upset. I told her she might have to stay like that forever, with her head stuck in a chair. She didn't like that. I was in tears because I was laughing so much. I decided the best way to handle it was to keep her calm so we started to read a book, sitting in front of the mirror with her head stuck in a chair.
The nurse came in and assessed the situation. She held Katlyns ears while I carefully pulled the chair off her head. She was so happy she started clapping. The poor little buggy. The nurse said she couldn't even understand me but decided I must need her for something and decided to come quickly. She probably couldn't understand me because I was all the way across the room and laughing. It really was just so cute and I'll never forget it.
Katlyn is doing very well. Yesterday she had to get some blood work done and her neautrophils were up a bit compared to Thursday. She had been 700 and yesterday she was 820. It's hard to say what's going on exactly. Her doctor said there is still a possibility that she could drop over the next 2 or three weeks. Hopefully, that's not the case and she keeps climbing up. If she still drops then hopefully it's just slightly. Her doctor told us then when Katlyn's neautrophils are above 500 and there is so lymphocyte activity, then we can go back to Halifax. From there it's unknown because it's up to her doctor at the IWK and what he wants to do. Understandably, we do live a 8 hour drive from the hospital.
Her doctor here just wants to get her home as soon as possible because he doesn't want to put her at more risk either at the clinical center or Children's Inn, which of course we can appreciate. I'm so thankful they want to be just as careful as we do. Dr. Issekutz, at the IWK, is a very very careful doctor as well. We trust him and know that whatever he decides is the best thing to do.
All is well though. She looks great and from what I can see, she feels great too. She started to pick her nose recently also. She was standing in the corner very quietly and went over to see what she was doing and sure enough she had her finger shoved right up there. What a little bugger.

Friday, June 1, 2007

Day 6

Katlyn always seems to be running around with her notepad and either a pencil or crayon.
It will be so nice when we can actually let her walk out the door. She's trying to figure out how to operate it on her own.
Katlyn playing with her grocery cart. If you notice behind her there's lots of coloring on the door and wall. She must have forgot about the notepad that day.
Cute as a button. That's my little Buggy.

So there hasn't been any real news of yet. Right now we are still waiting for her cells to hit their lowest. They must do this first before they can start to go back up. In the past they usually see this happen within 10 days of the chemo and right now we're day 9. As of Thursday her neautrophils were 700 and we expect that they'll go lower by Monday, her next blood draw. How far, we don't know. This process is unfortunately necessary in order to give Katlyn's new cells an unfair advantage over her old ones. So first we'll see everything go down, and then everything will come back up. The first thing we'll be watching will be her neautrophils and then after awhile her lymphocytes. The main focus right now is neautrophils and Katlyn's are doing pretty good. The kind of think of 500 as a milestone or a safety. 500 isn't high, but it's a start.

Everything is fine though. We're just keeping ourselves really busy trying to keep Katlyn healthy.