HAPPY TRANSPLANT DAY!!!!!!!!!!!!!!

It's been awhile since I have updated Katlyn's blog, but there has been reason. Last week we had a visit at NIH and we were very happy to see that Katlyn's neautrophils were climbing and staying within normal range. She reached an ultimate high of 3600. We were very happy about this. Katlyn received her IVIG last Tuesday and everything went well with that. On Wednesday Katlyn was brought into the OR where she was scheduled to undergo four biopsies on those spots I have mentioned. Everything with the surgery went very well. A couple of hours after the surgery we were notified that Katlyn's neautrophils would probably drop because she was given a type of medication that Katlyn has been shown to be sensitive to in the past. It is standard practice for a patient to be given something during surgery to reduce the chances of infection. Katlyn apparently has been given this medication in the past and it has caused her neautrophils to drop possibly. You see, Katlyn was having a problem with her neautrophils anyway, so they didn't know if it was an effect of the medication.
So we checked Katlyn on Thursdasy morning and she had indeed dropped down to 600. By that evening she had gone up to 800 and so we came home on Friday morning. You see, 500 is the safe mark and they would have kept Katyln is she dropped below that. So we checked her again on Saturday and she climbed back up to 1400. The newest count was yesterday and she had dropped. We thought the effects of the medication were over, but a count of 470 says otherwise. So now we have to keep Katlyn even safer. We can't go outside if it's windly, or around freshly mowed grass. We have to watch her very closely and take extra care and caution right now. I will be taking her again for bloodwork on Monday and hopefully things are looking better.
On the plus side, Katlyn is feeling great. A couple of her steri-strips had fallen off one of her spots, but while I was at the hospital yesterday they fixed it. The nurse also took a look at all of the other spots and said they looked good.
Now here's the very exciting part. Katlyn toxic matobolite level was down to 0.8%. That is what kills off her cells and why she has no immune system. Because Katlyn has a defective ADA gene, her body doesn't usually filter those toxins. Obviously, Katlyn is having ADA activity because thos toxins are being moved out. This is great. This shows her gene therapy is working and it's only a matter of time and her cells will come up stay up. I beleive that someday soon, Katlyn will be healthy.
Katlyn is happy and well. The 26th marked one year since her transplant, and I just can't belive it's been a year. In some senses it's been a long time, in some other ways it passed very quickly.

Happy Mother's Day

Katlyn is doing well. I took her for just routine blood work on Friday and the doctor called me that afternoon to ask how Katlyn was doing. He probed me with questions as to how she was feelings. Initially, I was a bit worried about the nature of his questions, until I realized he was asking because Katlyn counts were very good and he just wanted to be sure it wasn't because she was sick. He told me her neutrophil count was incredible, at 2500. This is incredible. For those of you who have read Katlyn's blog all along, you know that Katlyn has always had problems with this number. She had to be at 1200 in order to participate in gene therapy, and it took us 8 months of trying different things to get her to that point. A count of 2500 is amazing because she has never ever been that high and that count is very very normal.
Secondly he told me that Katlyn lymphocytes count was about 170. She has been running around 100, so this is also progress. Like I have mentioned, we still have a long way to go. A normal lymphocyte count for Katlyn would be around 4000, but thinking back to when Katlyn was first diagnosed at 6 months old...she had no lymphocytes. All of this news is very encouraging for us. On May 26 Katlyn will be 1 year post gene therapy, and it's nice to see that she is still going up. She seems to take jumps every onece in ahwile and when she takes these jumps, she goes higher and higher. The last jump I believe brought her up to about 1200. Whenever we get news like this it helps reaasurre us that Katlyn's gene therapy is working.
So we will be heading to Maryland a bit earlier this month. We will be travelling down on Monday the 19th and staying for about a week. This time, Katlyn will be spending her time in the hospital as she will be having surgery. They are going to biopsy three of her tumours, because they feel they need to find out more information about these tumours. As I mentioned before, the type of tumour that they found is a very rare type of tumour and a patient has never had many like Katlyn. We have counted 12 marks in all so far. So they will be checking one of her chest which feels as though there is a node in it. There is also one on the back of her leg that seems to be changing in appearance. And the third one will be one that we have noticed very recently. They want to take a look at all of these and compare them. Hopefully we'll find that none of them are tumours at all. Time will tell what all these marks on our daughter are and I remain sure of myself that my little angel is going to do great. Katyln is a fighter and she is going to get through this as well.
Mother's Day was so great. Johnathan and I took Katlyn outside for a nice little picnic in the park and then we went for a little drive. Once we came home we played outside for a while, rolling down the hills and playing hide-and-seek around the trees. It was very fun. Recently, Katlyn and Haley helped me to plant a couple of flower pots and I noticed they sprouted yesterday. It was pretty neat because it ended up kind of being a Mother's Day gift will out it meaning to be. I also got two very nice summer outfits which I absolutely love. And the greatest Mother's Day gift of all was looking at Katlyn and seeing how happy she is and how far she has come. I am so proud of her. I am so happy and proud to be Katlyn's mother.
In closing of this post I would like to mention my mother and John's mother. They has been so great through all of this. They have helped us in every possible way they can. We are so lucky to have them. My mother is very far away from us, but she is always helping us. Wheather it's an ear to cry in or going on a long trip to Halifax with me, she is always there. Thanks MOM. Johnathan's mother is also very supportive. Thanks for everything you do. Wheather it be picking us up water or something else we need when your out and about or listening to us when we just need to vent. You are incredible women and we are so very lucky to have you as our mothers. Thanks for everything you do!!!!!!!!

I love the Colonial Inn in Moncton, NB

I know I know. It has been a few days since we have been back from our trip to Halifax and it is taking me a while to update Katlyn's blog. Well, I'm happy to announce the reason for my tardiness is because Katlyn and I having been spending most of our time outside. The weather has been just absolutely beautiful and so we have been taking full advantage of it. Katlyn has been flying her kite as well as playing with her chalk and on her bicycle. She enjoys walking with her father to work and stopping to take in just about everything along the way. I know that most two-year-old children are very curious anyway, but with Katlyn's isolation I think she is even more curious of the world around her. She literally asks about everything at least 12 times. I love it. I have longed for the day when my little girl would be able to walk along and ask me what things are and be able to pick up sticks and rocks. It does sadden me that Katlyn is still not able to play with children and we can't go to the park and stuff like that, but I try my best not to focus on that stuff. Instead, I try to focus on what we are able to do now compared to last year. Last year, she was not even allowed outside and now we are spending most of our time out there.
So about the trip. This time Johnathan had to work so I took Katlyn on the long trip alone. We thought it would be a good idea to break up the trip by stopping Moncton before landing in Halifax. I don't really care for driving at night, especially with all the animals. So I set off on Tuesday to Moncton, stayed the night at the Colonial Inn and set off early Wednesday morning for Katlyn's IVIG in Halifax. It was about 3 hours away and we made it on time for her appointment. Mind you, I have never driven to Halifax before in my life. I did very good though. I actually feel quite a bit more confident about it now and I think I will take up driving the trip more often now. My mother works at the Colonial Inn and we are forever grateful to my mother who spent all the time she did getting Katlyn's room ready. The room was in tip top shape by the time we got there and we brought one of Katlyn's HEPA machines for safety. The manager of the Colonial is an angel. Anita, I cannot thank you enough. You are a great person and you helped us so much. Thank you!!!!!!! As well I would like to thank the rest of the staff at the Colonial for making our stay so great. You guys really make a person feel welcome!
So on Wednesday my mother came with Katlyn and I to Halifax. It went very smoothly. While we were there Katlyn got her routine blood work done, neautrophils 1100 and lymphocytes 100. She then got her IVIG infusion most of the day with no complications. During that time we met with a dermatologist who let us know that the tumor board at NIH did meet and they came to the decision that more information was need about these tumors. So anyway, there is talk about getting another biopsy. The dermatologist made a great point. She thinks that instead of just getting a sample biopsy, we should just take one. That way we will not have to worry about such tumor anymore. I like this idea because the tumors are not that big anyway, and I think it would be less of a hassel to just remove the whole thing. The type of surgery that may be used to remove a tumor is called Mohs surgery which decreases the chance of recurrence with these tumors. The lucky thing is we have a Mohs surgen in Saint John, which is only a couple of hours drive away. YAY!!!!!!!!! So we'll have to wait and see overall what they all decide.
Besides that, we had kind of been forced to wait five weeks for Katlyn to get her IVIG this time. All her levels came back fine, and if they did I knew this meant we could probably wait 5 weeks and instead of four before giving it to her again. I had been talking with Katlyn docotr this morning and he mentioned we may even wait six weeks. This is great news and I am very excited. So anyway I better go because Katlyn is having her lunch and then we are once again heading for the great outdoors.
Thanks a lot again to the Colonial Inn. I just love it there.

This is Katlyn about 10 minutes after leaving the for our long ride to the airport.
This is Katlyn under her plastic shield at the airport
This was Katlyn's room at NIH this time.
This is Katlyn's old room where she spent 8 months. It's strange seeing it from the outside and empty.


I am so happy to report that I am feeling a bit better today. I just realized that we have no idea what is going to happen, and I was just spending way too much time moping around. Katlyn is a very strong little person. We have seen her overcome so many obstacles already and she's going to get through all of this too. Besides that, we still don't know exactly what will be taking place. Every since Katlyn was first diagnosed, a bone marrow transplant has always been a possibility. There is a possibility that she still might not have to have one.
Also, it's possible that all these marks on her body may not be the same thing. They know for sure that one is because they biopsied it, but the remainder are still unknowns until the same is done.
I have faith that everything is going to be okay. For now, I'm going to try and focus on the now. Katlyn is doing well otherwise, so I need to focus on that. The weather seems to be getting milder, so I think I'm just going to try and spend as much of our time outdoors as possible. Katlyn is pretty anxious to learn how to ride her bicycle anyhow.
On Wednesday we will have to take Katlyn to the local hospital for her RSV shots. Luckily they are the last ones for this year. YEAH!!!! No more shot in her legs. I'm sure she'll be very happy about that. Also, on the 16th Katlyn will have an appointment at the IWK. If Johnathan works, I will need to take Katlyn on my own. I have never driven that fall on my own before, but I'm sure I'll be fine. I may need to stop a lot to help Katlyn, but it's okay. We have a couple of ideas on how to make the trip even better anyhow.
Besides that we will anxiously await the news from NIH about Katlyn. She is scheduled to go may at the end of next month, but they let us know that that date is subject to change at any time.
Please keep our little girl in your prayers because there is a lot of power in prayers.
Thank You.
This is a model of the Clinical Centre. I think it would be impossible to get a picture of the real thing. It really is that big. It is the largest brick building in the world.
Here Katlyn is talking to the fish in one of the CHildren's Inn's very beautiful fish tanks
These rainbows on the floor are reflextions from one of the windows. They are everywhere at the Children's Inn. Katlyn is fascinated with them.
On the way home, we stopped for a break and Katlyn asked me if I wanted to go for a ride. When Johnathan got back in, the blinkers were going and the wipers and heat were on.

This morning I woke and decided that I was going to try my best to focus on today. I have a very beautiful little girl and right now nothing is going on but worry. Maybe if I can just try my best to put all that stuff in the back of my mind for now, it may be a little easier. I know it will be difficult to do when all I can do is think about all the things we have been told. Last night was a very difficult night for for both Johnathan and I. He is currently working days, and he had such a hard time falling asleep, even though he had to wake up at 4:30. I didn't have an easier time either. I was very restless. The sleep I did get was filled with strange dreams. I really hate these feelings. I just want to know that everything is going to be okay and my little girl is going to be okay.