Day 68

I know it has been awhile since I have been able to write. We have just been so busy with Katlyn. I don't mean busy clinically. I just mean that an 18-month-old child locked up in one room can keep you pretty busy. She is on the go constantly. She is talking a lot more now too. It's so cute. She'll talk a whole lot of rubbish and then at the end she'll and a few words that we can understand. I love it so much. She'll say....blah blah blah blah blah blah (really fast), turn off the light?" It makes me laugh every time. This week we have been focusing on barnyard animals with Katlyn and the noises they make and she is really taking off with that pretty fast. We have been teaching her them all along, it's just I decided that this week we were really going to focus. So, I found her some animals in one of the playrooms and a animal puzzle, which she really has taken to.

So we did get the results back for Katlyn's T-cell proliferation and it went down quite a bit. It had been around 7,000 and this time it was 600. Of course again this came as a huge punch in the stomach for Johnathan and I but after speaking with Katlyn's doctor about it, I think we feel a little better. He said that this test alone doesn't really change anything with Katlyn doing well. She is still moving along very nicely. Apparently this test is so variable that it could turn out that the next time the get the numbers they could be right up there again. He said that the test is done less frequently and it's really hard to determine what the results of this test means necessary because none of the other center's doing the gene therapy have published results of these tests. They know that the have gone down, but they don't really know any more than that. So they will be doing this test every two weeks. Besides that Katlyn's neautrophils as of Tuesday are still above 500. She was 618 I believe. Which is still great. She will be getting blood work again tomorrow. Her absolute lymphocyte count went down as of Tuesday to 50. The way I see it is that we want to be sure Katlyn is at a safe level with her numbers before we leave. There's no sensing in rushing to go back home when it would just put Katlyn in danger. So we have to wait for this proliferation test to be at 10,000, which just gives all the other counts even more time to get at the right levels, and for us to be that much more sure.
Now on the brightest side of things, they did get some very good results with Katlyn's research blood. When she came here, her toxic metabolite level was at 13% and as of the last time they checked, Katlyn was at 5%, since the gene therapy. That is fantastic. That means the ada enzyme is working in moving those toxic metabolites out of her body. It is going to take time for all of her numbers to come up but it does appear as though the gene therapy is working.
Katlyn's doctor said that with the tests that they are doing and the numbers they are seeing, it does indicate that the gene therapy is working. The way to be sure is by Katlyn going into the real world and seeing how she does. She will get there, but we just want to be sure that she's plenty strong enough. So we are going to take her slow. The child form Argentina was back today for a checkup and he has been at home playing with hos brother and living normal, and he is doing great. Pretty soon that is going to be Katlyn too.
It make me glow from the inside out to think about Katlyn being able to experience everything. She is going to love the world.
Oh yeah I almost forgot to mention that I gave Katlyn a haircut over the weekend. Her bangs were just in her eyes all the time and I just decided to do it. I actually did a good job and her bangs are really cute. And most importantly, they're not in her eyes all the time. She looks so grown up. It's so hard to believe that she is going to be 18 months old in a few days.

Day 63

So you may have noticed that I have added a little you tube window in Katlyn's blog. The songs that I add here are songs for my dear little Katlyn. I find that these songs completely hit the spot and I just want to have them together so I can let her listen to them. Also so I won't forget.

Katlyn is doing fantastic. Her neautrophil count was 652 yesterday which is a great sign. Although she has dropped a few times, time trend is in an upward curve. You can tell she feels great. She just has so much energy. It's just makes us so happy to see our little girl doing so great. Everyday you can really tell that she feels just a little better.

Her lymphocyte count was 108 too. The doctors want to see her over 100. The third requirement is to have her T-cell activity at 10,000 and as of the results last week, she was 7,000. We should get the results from last week any day now. It's a little more difficult to just look up the results because it's not even done here and therefore it's not in their computer. So, we're just waiting for the doctor to let us know. He said that as soon as Katlyn is 10,000 and her neautrophils are over 500, she will be able to go for a walk outside. I just can't wait. I know she is going to be so excited. You should see her now. Just outside her window is a little courtyard and she always wants us to hold her up so she can see the birds in the trees. She gets so excited when they take off. I can imagine that one we take her out those doors and that fresh air hits her, she will be so happy. And that moment is just around the corner. It's so amazing. I know we still have such a long road ahead of us, but we make progress everyday.

The doctor mentioned today that once Katlyn's T-cell activity comes back at 10,000 or above we can start to make plans to go home. It's incredible. I asked both doctors the same question; "If her neautrophils are over 500, her lymphocytes of 100, t-cell activity at 10,000 and there's ada activity, will you feel confident in saying the gene therapy is working?" Both doctors gave me fairly similar responses. They both feel as though it's already evident that it's working and really the true test will be in the future when she gets sick or gets immunized.

Isn't it incredible?

Besides that our life still remains stressful. Things are still not sorted out between the insurance company. Today I don't care though. I just look at my little girl and think nothing else in the whole world matters. Katlyn is doing fantastic and that is all that matters. The rest are just small details and they'll work out in the end.

Just to bring everyone up to date. Katlyn is doing fantastic. He neautrophils were up slightly on Driday bringing them to 496. It's slow but it is still progress. They will be doing some tests for anti-neautrophil antibodies just to make sure that say the IVIG isn't interfering and making things harder. Katlyn's personality is fantastic though. She is eating loads more and she's just a little power house running around the room. Lately, I've had to strong desire to paint Katlyn's toenails but Johnathan won't let me. So a few days ago I coloured them in with a purple washable marker. She loved it. It also helped for her to learn toes. Now she is always looking down at her feet and my feet saying "toes." Besides that she will be playing with a marker and will attempt to colour her own toes. So she'll have her toes all scribbled on. Oh well. It's washable and she is really enjoying herself. She actually very artistic. The walls at the hospital are completely covered in crayon, pencil and marker. Johnathan picked me up some magic erasers today because it was starting to look like a back ally in her room. I have never actually used one myself but they are great. It is magic!!! All that crayon comes right off without barely any effort.
So aside from things going really great with Katlyn we have been going through quite a bit of unrelated to Katlyn's health stress lately. The insurance company notified me the other day that they were not going to pay for anything related to me being sick with the kidney stone after April 20th. It's nice that they are paying for the stuff before the 20th, but the stuff after is still $7,000. It's insane. It really seems so unfair. We did everything that we were supposed to do in checking to make sure we had travel insurance before we came here, and learning what that meant for us. We wanted to be prepared just in case anything happened to either of us. When I got here and got sick, I kept the insurance company update to date all the time and they never gave me any indication that anything was wrong. It actually seems as though they just wanted to get away without paying for it. The only thing I can gather is they contacted John's employer and asked them what the status of their employee was, to which they probably indicated he was on a leave of absence, and in return he was taken off the policy. The unfortunate part is we were never notified. The amount of times I had checked to make sure everything was fine before I went for an appointment, and reassured that everything was fine and it still went wrong. We just got caught in some kind of unfortunate loophole. The hard part is paying that money back. Neither of us are working in order to care for Katlyn, and really we both are needed. We have been going on the generous support of our community. The Social worker here is looking to see what can be done on this end and my aunt is trying to work something out in Canada. It's really unclear as to what is going to happen, but we are trying to remain calm. Things are going to work out. The main thing is I'm no longer sick and Katlyn is doing so great.
I guess what they say is true. IT COULD BE WORSE, and it always can.
Those of you who have been praying for us, Thanks so much! Your prayers are greatly appreciated and needed to help us through all of this. Our girl is going to be okay. I can feel it in my heart. She is taking baby steps, but it is still progress and she's moving in the right direction. In the direction of getting better.

Katlyn's neautrophils have dropped again as of Friday. She was slightly over 300. I don't really know what to say about it. We're not really sure why, other than the fact that Katlyn has always had troubles with her neautrophils. I think that her body just needs to adapt to what's going on. Her body has never done any of this on it's own before and we just need to be very patient. Her monocyte count went up, which by my understanding is good. I believe they will soon turn into lympocytes. I have to talk to Katlyn's doctor tomorrow to know for sure. The doctor that was covering told me she wasn't an expert in this field, but she wasn't concerned. I'll just speak with Katlyn's doctor and see if I can't get a better understanding.
Katlyn is doing very well though. She back to eating well again. We had to basically go backwards with her food, feeding her basically only baby food. Although she still is eating some baby food, she's starting to venture into the solids again. I think that is a fantastic sign. She's very happy too. Always laughing, playing and just having a great time. Since she got her hearing aids back she has been talking a mile a minute. It seems as though there is something wrong with one of the aids, maybe the feedback button isn't turned on, so I'm going to send that one in to get fixed on Monday. It's amazing, Katlyn doesn't take them out anymore. Sometimes I see her reach up for one, but she's just pushing it into her ear. FINALLY!!!!!!!!!!
Katlyn doesn't have blood work again until Tuesday, so hopefully it's up and I have some good news to update. I do have good news though. Katlyn has had her gene therapy and there are small signs that it's working. As time goes on, we will see stronger evidence, but for now we know that something is working in her immune system. Her ada activity this early on is great.

A lot has happened since the last time I have written, not much worth really noting though. I have to write it anyway because I want to remember that it happened anyway. So we had been told earlier this week that Katlyn is doing great, which she definitely is. Once she had 3 neautrophil counts in a row we started to talk about when it might be time to go back to Canada. The told told us that Katlyn's lymphocyte count was a little borderline where he wants to see it, so he just wanted to watch it over 5 or 6 days to be comfortable letting us go. He said Katlyn T cell activity had to be above 20,000 and hers was 27,000, so she was okay with that. He thought we might be able to go back to Canada as early as next week.
Well, the following day he came into Katlyn's room and was very regretful to inform us that he had been mistaken about Katlyn T cell activity. He said that she's actually around 2,700 instead of 27,000 and that she can't leave until she's 20,000. He apologized profusely and I just know he meant it. It was an honest mistake and the most important thing is Katlyn wasn't harmed. She is okay and nothing has just as far as her doing well. It's probably going to take us at least a month before we can leave, but Katlyn is doing great and that's really all we can ask for. It's really out of our hands. If it would be dangerous to bring her home, we don't want to. That really is the most important thing to us, Katlyn being okay. And she is.
She is doing fantastic. As of Tuesday, her neautrophil count was 595. On Wednesday she was 510 and today was 437. I think the reason we're seeing a little decrease in numbers is because they're checking her everyday. She will be checked again tomorrow and I'm pretty confident they will be up. We will be going back to checking them every Tuesday and Friday again for sanity reasons. The reason why we were checking them every day, is so that her doctor could assess if Katlyn was in fact ready to go back to Canada. Now that we know we're here for a bit longer, we can just monitor the way we had been.
Katlyn finally got the ear molds for her hearing aids today. There had been a mix up with the mail so it took about three weeks for them to get here, which was a bummer. They are great though. Katlyn barely bothered with them all day because they fit so well. She even said at least a dozen new words today including "Home."

See what that girl is up to. Playing with buttons again.
Sneaky, Sneaky.

So the doctor came in this morning and gave us some very exciting news. The reason why Katlyn is immune compromised is because she has a mistype in her ADA gene. The ADA gene
produces an enzyme called adenosine deaminase that is essential for removing toxic metabolites from her body. Because Katlyn has a faulty gene, the toxic metabolites remain in her system and destroy lymphocytes, and thus is why Katlyn has no functioning immune system.
When Katlyn first entered the study her ADA activity was at an abnormal level around 0, where 60 units is normal. Some of the research blood that they took earlier in the week indicated that Katlyn now has 30 units of ADA activity.
When they inserted a new ADA gene into Katlyn's cells, the new gene should take over the old genes work and correct the problem. As her new ADA gene takes over, it should clean out the toxic metabolites and therefore her lymphocytes should be safe. Her doctor seemed very excited that Katlyn is showing signs that the gene therapy is working.
We are so happy. Katlyn seems to be doing very well. They weren't sure they'd actually see anything at this point, so this is great news. Our girl is going to be okay.
Clinically, Katlyn is doing very well. She is acting like a typical two-year-old, meaning the terrible two's have arrived. That child has become so expressionable all of a sudden. She can stick her bottom lip out almost a foot. Okay not a foot, but you get the idea. She has a lot of teeth now, I've really have lost count just so you get the idea. However, more are on the way. She seems to be drooling buckets again and she was a little fussy this evening. She great though.
Tomorrow morning Cole's mother Jenn and I have an interview with CBC Radio. It will be a taped interview, so I will let everyone when it will air, as well as have a link on her blog.

Day 45

Katlyn is doing very well. Her neautrophil count as of yesterday was 473, which is a very good sign because she didn't go down. Who knows how long it's going to take her to make her way back up, but I'm very optimistic that's that is what we are seeing. Each time Katlyn has her cells checked we will know more and more and be even more sure of ourselves. It's really hard to base her numbers on one blood count, instead we need to look at the whole trend. From what I've learned, watching over a week or so gives a better idea. So looking at the past week, gives me the idea that Katlyn is up. She's still a little below 500, but she'll get there soon.
I was talking to her doctor about whether or not they will give Katlyn's cells back to her. When she had her harvest done, the took some cells and set them aside just in case they needed them for anything. They are the only cells they have that haven't been exposed to the gene therapy. At 30 days the doctors have the option of giving Katlyn back her cells if her neautrophils aren't above 500 for three blood counts. Well her doctors seem to agree that at this point, giving Katlyn back her cells wouldn't have any benefit. They would like to keep them in case they need them down the road for anything.
Katlyn had some research blood taken on Tuesday and I haven't talked to the doctor about anything they've found yet, but he told the nurse to let us know that the ada activity was good and he would talk to us on Sunday. So I'm just patiently waiting to hear what he has to say tomorrow. I think it must be good. Any signs of ada activity worth noting would be a good sign, because that's what Katlyn is lacking. He had told us they weren't expecting to necessarily see anything this early. We'll see what he has to say tomorrow.
Another thing I found out was that Katlyn will be coming back here once a month for the research blood to be taken. So it will be a month from the Tuesday that just went by. I think we will probably be still here because we have to stay here for at least two weeks after Katlyn hits the 500 mark. Besides, we would like Katlyn to be exposed as little as possible, ideally not at all. The less plane trips the better, is the way I see it. It really wouldn't make sense for us to go home one week and come back the next. It think it would be in her best interest to wait it out.
So we are trying our best to get things at home all sorted out for when Katlyn goes back. We need to purchase hepa filters, a water purifying system, tear up carpets etc. etc. It's really quite a struggle since we don't know much about the hepa or water purifier. Besides that neither of us has worked in a really long time. I'm trying to do a little research to see if there's any funding available for the water purifier. It would be nice if we could find something, because from what I've seen so far, they are not cheap. It's not optional though. Katlyn must have clean water for both consumption and bathing in order to go home. Things will work out.

Day 43

Tomorrow is blood work day. I'll keep everyone posted. Oh yeah and CBC Radio called me this morning and asked me if I'd like to do an interview about Katlyn on Friday. I'm not sure but I'll post the information as soon as I know. Katlyn is doing very well. Her appetite has been a little off lately. I don't think anything is wrong, I think it's just either her age or a form of control. Who knows. We're managing though. We rotate her supper with spaghetti for one spoon and strawberry jello for the next.
She is getting smarter and smarter everyday. Today she had a great day and was full of so much energy. She started to say "oh, man."
The other day I was at the flea market in Bethesda and I came across this little wooden Buddha. So of course I had to bring it to Katlyn for luck. Well, she carries Buddha around with her everywhere. She loves him so much. This morning John woke up to Katlyn saying "hi Dad. Hi Buddha." It really is very cute. It's not lightest piece of wood and she lugs it around everywhere. Well, I guess Buddha weighs nothing compared to the flat of 12 bottles of formula that she was lugging around another day.

Day 42

So today is day 42 since Katlyn had her gene therepy and this are going very well. Yesterday Katlyn had a neautrophil count of 460 which is progress. Hopefully she keeps going up. We will find out more on Friday. If she still there or possible a little higher, then we moving in the right direction. Once Katlyn has four counts at 500 or higher, we are allowed to go back to the IWK. We just can't wait. I think we get more and more home sick everyday.
She is doing great though. You can tell she feels wonderful.

Pics

Katlyn getting in trouble.
Drawing on the fridge.

Running away from me with crayon.
See how silly she can be.
Really silly!!!!!!!!!!!!!
And a little bugger too!!!!!
Sneaking back in for more trouble. Probably to try and play with the plugs I imagine.


Sorry I haven't updated Katlyn's blog in a little while. We have been pretty busy and there hasn't been a whole lot to update. Katlyn had her blood work on Friday and her neautrophil count was 270. We're still waiting for her to take that leap and start climbing back up. I had a talk with her doctor about it and he feels that Katlyn is doing fine. They are learning that some
reason some children with ada scid have a problem with their neautrophils. It seems that some of them take a little longer to climb back up than other. He said it doesn't seem as though they have done any permanent damage to Katlyn's bone marrow with the chemo because her other counts are fine. The expect in such a case her hemoglobin's and platelets would be low and for Katlyn they are normal. When she had her harvest her hemoglobin's did drop for a bit, which they were expecting to happen anyway, but then they climbed back up and they're fine. So we just have to be patient and wait.
There is a 30 day rule. After 30 days if they see 3 neautrophil counts under 500, they have the option to give Katlyn her bone marrow back. Her doctor told us they were just going to see what happens and make a decision at that time. It may be that they might make an exception because they never took into account that sometimes they have a bit of a struggle with their neautrophils. If they ever do give Katlyn the cells back, it doesn't erase the gene therapy or anything like that. They are only going to do that if they feel it's in Katlyn's best interests.
On Tuesday Katlyn will have her counts checked again as well as her first research blood taken. This research blood will be used to measured a lot of different things including how much ada activity is detected in Katlyn's system.
We just keep praying, stay strong and try our best to make sure Katlyn stays safe. She's going to do great and this time next year she is going to have almost a fully functioning immune system. I just know it. Our girl is a little fight.
Oh yeah, I wanted to update my four-leave-clover count. On Saturday I found 7 four-leave-clovers and 1 five-leave-clover. I didn't even know there was such a thing as five. They are all on Katlyn's window though to give her good luck. I just think it's pretty neat how I found so many in one day. The total is 11 four-leave-clovers since we have been here and one five.

Today marks the anniversary of the day my younger brother was killed in a car accident. He was only 18 and the shock was unbelievable for myself and my family. This day is a very hard day for me and I know it especially hard for my mother. There isn't one day that doesn't go by that I don't think about him. Sometimes I wonder what it would be like to have him around now. I just know that he would love Katlyn so much. I feel he is watching over her though. I know this blog is about Katlyn, but I feel as though my primary reason for starting it was to look back on it some day with her. Although she will never have the opportunity to be able to know my brother, I want her to know how much he means to my family and I, and besides she's a part of him. He would love you so much Katlyn, I just know it.

GALLANT - In loving memory of Kurtis, who passed away July 1, 2004.

This month comes with sad regret,
Brings back a day we will never forget
The blow was great, the shock severe,
We little thought the end was near.
And only those who have lost can tell,
The pain of parting without farewell
No one knows the grief we bear
When the family meets & you're not there
You left so suddenly,our thoughts unknown
But you left us memories, we are proud to own
In our hearts forever Daisy, Mom, friends & family