Friday, August 31, 2007

Bone Marrow Aspiration Today

Here's some pictures of our little princess............

Here are some pictures of our little firefighter.....

So Katlyn had her bone marrow aspiration this morning and there were no complications. I don't know why I always get so stressed out when Katlyn is put to sleep. I just don't feel at ease until someone comes in the waiting room and says she's doing okay. No matter how many times we have gone through it, it doesn't get any easier. Each minute takes an eternity.
Anyways, two of the doctors took a look at Katlyn's slide of bone marrow and did see there was an abnormality there, but that it looks like it has improved since Katlyn has come here. That was very uplifting news for us. I couldn't sleep barely at all last night and I know Johnathan didn't sleep at all.
So she received a shot of GCSF tonight and we will follow her counts through the weekend to see how it does. If all is good on Tuesday (Monday's a holiday), than we will be free to go back to Canada. We'll just have to wait on the plane to come and pick us up.
The doctor also let us know that the patient before Katlyn (the first in the protocol) had to get shots of G twice. He's doing really great now and is back home in Argentina.

Thursday, August 30, 2007


Katlyn will be heading to the OR at apprixmatley 10:00 a.m. in the morning for her bone marrow aspiration. She will be put asleep for the procedure. I'm pretty sure that everything is going to go great and we won't get any surprises. As soon as they prepare the slide her doctor will examine it for adnormailites, and if all is clear they will give her the GCSF and we can go back to Canada. Timewise it's all dependant on when they make the slide. They may do it either tomorrow or Tuesday, as Monday is a holiday. And then after that we will just have to wait for the plane to come and get us. Also Katlyn will have some bloodwork in the morning and hopefully all looks well.
Please keep our girl in your prayers. I will update her blog just as soon as I get a chance.
Also, Katlyn is really growing up so fast. It is so amazing. She is in the process of being switched from formula to milk, and is doing great. She had been on lactose free formula, and now is switching to regular whole milk and there has been as bad effect. If anything things look better. Also, Katlyn is pretty much eating entirely all by herself. We are just so proud of her. She is a big girl now.

Day 99

This is us posing for a picture with our favourite nurse in the whole United States, Gene.

This is Katlyn getting a visit by Toffee, one of the caring canine at the hospital. This is a fantastic program, and Katlyn just loves those dogs. Especially on this peticular day. She had quite a bit more time than usual because a photographer needed some pictures. It was so funny because she always refers to a canine as a "dog," but on this day she way saying "doggy, it's a doggy."

Wednesday, August 29, 2007

Day 98

So we got somewhat bad news yesterday. We will not be coming home this week. Yesterday Katlyn's numbers dropped a bit so her doctor examined her blood smear himself and by looking at her blood it still looks the same as it did when she first got her and he examined it. He told us the safe thing to do would be to do a bone marrow aspiration on Katlyn to make sure there isn't any known problems. They believe that something is going on with Katlyn but it's unclear what that is because they haven't got it all figured out yet. So they will do the bone marrow aspiration like they have a few times already and haven't found any problems. The thing is since Katlyn's gene therapy, her bone marrow should be different. So if they don't find any known problem they will be giving her an injection of GCSF, which will stimulate Katlyn's bone marrow to produce a greater number of cells. They hope by doing this they will give Katlyn a boost and as she starts to fall and level out, she'll stop dropping at a higher number. She has received GCSF before and the first couple of times it seemed to work great, but every time they gave it to her it seemed as though she would drop faster and wouldn't settle at a higher number.
They don't expect to see any known abnormalities with her bone marrow but they are trying to keep Katlyn's safety in mind. If there was a problem and they gave her the GCSF, there could be consequences. So that all said and done, if there are no problems and she ends up getting the G, we could be going home next week.
This is very frustrating for us. Throughout Katlyn's diagnosis this keeps happening to us over and over again. It is part of the journey but it is so hard because we just don't know when it's safe to get happy and excited about something. If it don't rain it pours as they say. The great news is Katlyn is still doing fantastic. She had her research blood drawn yesterday as well, so probably by the time we're ready to go we should know what her ada level is.
It's so hard to say why Katlyn is taking so long to climb back up. First of all, I'm not a doctor or a scientist, so I have no idea other than what the doctors tell me, and even they aren't completely sure. She has two doctors and it seems like they both have their own ideas about whats going on with Katlyn. The one with whom I spoke with yesterday is still sticking with his theory all along. He thinks that because Katlyn received such a small number of cells that things are going to take time. They had no choice but to give her the small number of cells because that was all they had collected.
So Katlyn is neutrophenic again, meaning her neutrophil count is below 500. I'm so glad we never took off our isolation gowns, gloves etc. No matter what anyone says, we will not take them off until we know that Katlyn is safe. She is just too close to that 500 mark.
So we're not really sure when it is that we'll be able to go back to Canada. It would be nice so that we can actually start getting things ready for Katlyn to go home so that she can have a great quality of life. It seems harder and harder everyday being stuck in that room. She should be able to go outside like a normal child. It really saddens me that she has been robbed of all that so far in her life. I really would do anything to be able to allow her to live like a normal child and take all the sickness away. It's so frustrating because we are completely powerless. We are doing all that we can do to make Katlyn's quality of life great, but we can only work within these restrictions.
Hopefully some day soon our girl will be able to venture outside and be able to experience all the things she deserves so much. I love Katlyn so much. I'm so proud of her for being such a strong person through all of this. She has been through so much and she just keeps trucking. She really is the bravest person I have ever known. I love you so much Katlyn.

Tuesday, August 21, 2007

GREAT NEWS!!!!!!!!!!!!

First of all Katlyn's numbers were great today. Her neautrophils were 546 and her lymphocytes were 114. The doctor came in this afternoon with some very exciting news. he notified us that he was speaking with Katlyn's doctor that had been in Italy and they both agree that it is time for Katlyn to go back to Canada. We are so excited. Katlyn's monthly research is on Thursday as well as her dose of IVIG, but anytime after the dose of IVIG she can go home.
I contacted Dr. Issekutz at the IWK to see if he you could a flight together for Katlyn's trip home. He said it usually take a week to get it arranged but that he too agrees that it's time for her to come home. He has been brought up to date by Katlyn's doctor here of her progress and said he's not sure how long Katlyn will have to stay at the IWK. However, once we get back to Canada we can start working all of those details out.
This is so exciting. Finally. We are definitely going in the right direction and everyday Katlyn is getting stronger and stronger. Someday very soon Katlyn will be able to be home, and we very much look forward to that day. Hopefully maybe she'll be home for her second birthday and be able to have some freedom.
We still have a long road ahead of us, but I think the hardest stuff is already behind us now. We will definitely hit some bumps along the way but everything is going to be alright. Our girl is doing alright and that's all that matters.
So as soon as we get home we have to work out the details of where Katlyn is going to live. We know one things for sure, we are going to try and make everything as safe for her as possible, but it definitely looks like we'll be living in Moncton. The water is one of the biggest benefits of living in the city and we'll be a lot closer to the IWK, and I will also have my mom there for support. I think it will be a great move to help us get back on our feet and make things as safe for Katlyn as possible.

Monday, August 20, 2007

Day 89 post transplant

Again I need to apologize for not writing as often as I should and would like to. It has been insane since the last time I wrote. I have barely got any sleep and it's all because if a unwanted visitor taking a stroll through our room at the Children's Inn the other night. I was laying there reading my book droning in and out, when something dark on the wall caught my eye. I jumped up like I've never jumped before. There was a huge bug on the door and I was pretty certain it was a cockroach. Not 100% though, as I have never had an encounter with one before. So the first thing I thought was that no one is going to believe me and I'm going to have to go to sleep with this huge bug in this room. So I quickly taped the bug in my room. Trust me when I say I didn't get too close and that's where the zoom came in handy. Trust me when I say that bugger moved fast. So after getting some footage I ran downstairs to get some help. The security guard let the manager on duty know and followed me up to our room where we met the manage. The security guard said it defiantly was a cockroach and he squashed it with my shoe. As soon as he said it was my face went completely red and tears filled my eyes. At that very moment I became even more home sick. I've never heard tell of a cockroach in Canada.
So the suspect he was just by himself and was just passing through. I think he might have came through our neighbors window because they leave it open all the time. So that has been keeping me up at night. I still can't shut off the light or television when it's my turn to go to sleep at the Inn.
So Katlyn is doing extremely well. All of her numbers are up. Her neautrophils were 624 on Thursday which is fantastic and we're hoping they will be up again tomorrow. Also, her lymphocytes were at 98 and they need to be at 100. And finally her T-cell proliferation was 18,000 and it needs to be 10,000. So that was very uplifting news. So One of Katlyn's doctors is currently in Italy on vacation so when he gets back they are going to talk about when it is that Katlyn can go home and then will get in touch with her doctor at the IWK. I really hope it's soon. We have so much to do to get a home ready for Katlyn when she can finally go out in the real world and we really can't do anything from here.
We are going to move to Moncton because there is city water and that will solve that problem. We are hoping we can live with my mother but we need for someone to take a look through her house to see if it's safe and what needs to be done. And I'm guessing a lot of fundraising is still going to be needed. We still have such a long road ahead of us. We are going to get Katlyn through it though, no matter how much work we need to do.

Monday, August 13, 2007

Sorry that I have been busy lately an unable to write on Katlyn's blog as much as I would like. We seems to just get busier and busier everyday. The great thing is our days do go by really fast and before you know it it's time for us to go to bed. So all of Katlyn's research blood has come back and things are looking very good. We had a meeting with one of Katlyn's doctors, because he will be in Italy over the next couple of weeks, and what we heard was very promising and uplifting news. The showed us all of Katlyn's progress since back when she was still the PEG ADA and all the numbers are very consistent. What they are telling us is that the gene therapy seems as though it's working and they have evidence of it working. However, Katlyn is just going slow so it's really hard to say when she will be to the point that she can actually leave this room and go back to Canada.
Her neautrophils have dropped slightly to 450, but if you look at the history of her neautrophils they should go back up at anytime and even go higher this time. Overall though Katlyn does seem to be going up. Each time she drops she drops at a higher level than before and at her highest points, she keeps getting higher and higher. It's a very slow progress but Katlyn is coming along great. Her t-cell proliferation has gone back up and is 5400. It's very possible that there was an error in the test that indicated that her proliferation was at 600. Also her ada activity remains the same at a good level. Besides that we have got some good news about Katlyn's liver enzymes (ALT and AST) have both returned to normal levels. This great because if they remain at normal levels Katlyn's doctor will be switching her anti fungal med back to an oral med instead of IV. So that would mean that Katlyn wouldn't have to be trapped and hooked up for an hour and half each day. She would be free.
I find as Katlyn is getting older she is becoming much more aware of her surroundings. I think that she understands now that there is a lot more to this world than just this hospital room. When we're looking out the window at the birds she gets this quietness about her and looks back and forth form the window to the outdoors to the hallway. It is just so hard. It really breaks my heart so much. I'm starting to notice she wants out. I don't think we've ever had her wanting it until now. I just want it for her so much. She is really going to love it out there. What a day that will be.
Besides that Katlyn's creative edge is really coming out. She Absolutely love colouring everything from paper to the walls, her toes to her face. She is having a blast. Just the other day she made a little book for Johnathan and colored on every single page and even glued cheerios to one of the pages.
So that's about it for any new news. She is doing great. Things are going slow but everything is moving in the right direction.

Saturday, August 4, 2007

Here is Katlyn having a visit with a therapeutic dog. They have come to visit her twice now and she just loves it.
Our little monkey.
This is Katlyn wearing Mrs. Potato Head's earring as her own. I was in hysterics.

Katlyn is doing very well. Some of her research blood is starting to come back now. So far things are looking good. Her ada activity is still about the same which is great. Her neautrophils were down a bit as of Friday, to 499, and her lymphocytes 83, but we know she's going to go right back up. As most of you would know from following Katlyn's progress, she does bounce back and forth. Each time she goes higher and drops less and less. So overall it's looking great and Katlyn's numbers are going up.

I had a talk with one of Katlyn's doctors about her t-cell proliferation, and he said he has a theory as to why he thinks it went from 7,000 to 600. He said that Katlyn's toxic metabolites had increased just before that blood was taken, so he thinks that maybe those cells were sick and not able to function properly. He said it takes the cells about two weeks to die off, so we may get some good news this week. Katlyn's toxic metabolites are back down and as a result, if her doctor's theory is correct, her t-cell proliferation should be up. Here's hoping.
She is doing fantastic though. On Tuesday the doctors and some of the nurses were trying to convince us to remove the reverse isolation precautions. We thought about it all day long and hard a hard time with that one. We had both come to the same conclusion that we were okay with not gowning ourselves, but didn't really trust anyone else enough to remove the isolation precautions. Basically we were told that it would be really hard to enforce something like that if we weren't practicing it ourselves, so we decided that the gowns will stay. We are just way too uncomfortable with it. One reason being that we feel Katlyn isn't to that safe point yet.
We have had pretty hectic week. Sometimes it seems as though it just never ends. For starters, John found out that he has lost his job. So that was kind of a blow and besides that we have been so busy between the hospital and the Children's Inn doing a lot of work. I'm going to leave it at that because I don't want to discuss it, but I also don't want to forget it.