Wednesday, October 31, 2007

Thanks to the NIH and Children's Inn

I would like to thank the NIH for the most obvious thing first of all. Thank you so much for accepting our little girl into the protocol and giving her a fighting chance at life. I think that everyone has agreed that the gene therapy is working. It may be slow coming, but Katlyn's immune system is getting stronger and stronger everyday. I really hope that Katlyn's doctors at the NIH realize what they have done for her. With a bone marrow transplant, the outcome was questionable and very scary. You have saved our little girl's life. Each of you have a part in that, and we thank you from the deepest depths of our heart. We look foward to working with you over the following years to watch Katlyn's progress.
I'm so glad that Katlyn was able to benifit from her treatment, but also be able to help children that come after her with this diagnosis. Participating in a research study is very difficult because you have a lot of unanswered questions, but Katlyn's doctors did their absolute best in trying to provide us with as much information as possible.
We also thank you for trying to work with us to make our stay as comfortable as possible. We understand that our practices were not what you were used to, but I think that you tried your best to help put our minds at ease. Some of the nurses that worked with Katlyn are some of the most fantastic people we have ever met, and we are going to miss seeing you and will look foward to seeing you when we come back for Katlyn's checkups.
I don't really think I could ever let the Children's Inn know how thankful we are to them either. You gave us a support network and leaning post when we needed it most. You really took care of us in so many different ways. We loved all your hugs and kind words over the six months we spent there. You were there for us when things got stressful and always did everything you could to take the stress off our shoudlers as much as possible. I think everything you do is amazing and everyone who has a part in making the Children's Inn what it is, is so special.
Thank you to everyone at NIH and the Children's Inn who had a part in Katlyn's treatment and helping to make our stay as comfortable as possible.
Some of you really touched our hearts and we will never forget you.

Friday, October 26, 2007

I am happy to update Katlyn's blog with the news that we are back in Canada. YEAH!!!!Katlyn is at the IWK Children's Hospital in Halifax, N.S., for an unknown amount of time. We know one thing for sure. We still have to get things ready for her. Katlyn needs a safe place to live first. So right now we are looking at my mother's home to decide if that would be safe enough. If it isn't we have to find an apartment in Moncton, along with new jobs and the whole deal.
Katlyn is doing great though. She seems to have transitioned very well. When we came back here, it almost felt as though we never left. They were definitely waiting for us with open arms. We will be returning to the NIH on Nov. 26, for Katlyn's research blood.
Today is a very exciting day because John's mother, father, two grammies and super special daughter Haley, will be coming to visit. We have missed them so much. It will be very interesting to see how Katlyn and Haley interact with each other. I think it's going to be a blast. My mother will be coming to visit on Sunday, and I can't wait. We have missed everyone so much. It will be so refreshing to have people we love surrounding us.
Katlyn's neautrophil count as of Wednesday was 740, so it's looking like she may be ready to leave the GCSF behind (knock on wood). It has now been over two weeks since she has received her last injection. We are still waiting to hear about some of the research blood that they drew before we left. I'm thinking we should get some of the results at anytime now. Katlyn is on a double isolation right now, the first being her condition and the second because she came from another hospital. They have tested Katlyn to see if she has the antibiotic resistant super bugs. It's their policy to do this will all patients coming from another hospital. It shouldn't be much longer and she will lose that isolation.
Her doctor here has been fantastic in allowing Katlyn to still continue with her very open diet. She is allowed to get meal trays from the kitchen here. He even OK'd her stuffed animal, which she was very pleased with.
It's so great to be back. I LOVE CANADA!!!!!!!!!!! It's very nice to look at the big picture too, and see that that chapter of Katlyn's life is behind us now. That light at the end of the tunnel just keeps getting brighter and brighter. Someday soon we will be able to take Katlyn out of the hospital and that day is get closer.

Friday, October 19, 2007

So Katlyn is doing very well and just to let you all know her burn has cleared up very well. In one spot on her face, it must have been where the burn was the worse, the skin dried out and we were a little scared that it might start peeling off and scabbing. So we stopped using the burn cream and started to apply some special cream that we got from Canada (Eucerin Glycerin- not anywhere in this Country). So the rest of the dry skin eventually came off and it looks fantastic. She has one tiny little red spot, which I think is going to fade out. Luckily she never got it her eyes, developed an infection or is going to have any scarring.
She is doing FANTASTIC, her new word by the way. Katlyn's last t-cell function came back at 28,000 and her research blood is going to be drawn a bit early, on Monday Oct. 22. So that means that we will be returning to Canada on Tuesday. We are not waiting on any test results, so it should be a go ahead. We are extremely excited. The last week has been really wonderful for us because Katlyn has been staying at the Children's Inn every night and only coming back here every second day. We can tell she really loves it too. She actually get pretty upset when her she rolls up in her little red car in front of her hospital room door. She has seen what it is like to be in a warmer, more homey setting.
Her speech is coming along very nicely. I actually don't think there is anything she won't say. New words are coming out all the time. We are actually going to get her hearing tested as soon as we get back to Canada, because we have our suspicions that it may be a little better than her last hearing test (which was done a long time ago now). It will nice to check it anyway.
So we are looking forward to going back to the IWK. Although Katlyn will still be hospitalized, we are very excited to be closer to home. As soon as we get home we are going to plan a visit with Katlyn's sister Haley, all her Grammies and Grampy. We are so excited. We will not have to be back until Nov. 26, and then after that Katlyn's appointments will change to every two months. I'm going to post a bunch of pictures of our girl because I know I have been slacking in that area. We have just been so busy having our little girl at the Children's Inn, and having a great time

Sunday, October 14, 2007

It was a pretty tough weekend for our little sweety. On Friday we were at the clinical centre and all set to come over to the Children's Inn with Katlyn. We had Saturday completely off, which meant that for the first time in over a year, Katlyn would not have to go to the hospital all day. So we though. Katlyn was at the door anxiously waiting to get out with a couple of her toys in her hands, including her giggly wiggly and a Halloween flashlight that we had recently found for her. Anyway I had to put a mask on her so I took the toys our of her hands and she forgot all about them, so they were left behind. When we got to the Children's Inn we took of the mask to find that Katlyn's cheeks we red. It was windy outside, so we thought it could be possibly that.
She was fussy, but also very tired and went for a nap. When she woke up, she had these very defined red marks on her face. Upon taking a closer it look, it looked like a chemical burn to me. I lightly wiped at it with some baby soap and water, and she freaked out. We rushed Katlyn back up to the Clinical Centre to get it looked at. The doctor came in and we were all scratching our heads trying to figure out what could have made such a mess of her face. Katlyn was fussing so I grabbed her giggly wiggly toy, which was covered in an oily substance. I then quickly grabbed the flashlight, which was completely covered in it. We opened it up to find the inside was also covered. The batteries had leaked, resulting in a chemical burn on Katlyn's face.
Friday night was a very long night. Katlyn was very uncomfortable and I felt as though I only got minutes of sleep. I had to apply some ointment to her face all through the night to prevent infection and to soothe the burn. Also we had to give Katlyn some benadril because it looked as though her body was having a reaction to the chemical. The Yesterday the burn looked a bit better and hadn't blistered. We have to be very careful with it so that it does not get infected and it scares us.
Now we're Sunday and again the burn looks a bit better. Hopefully it heals up without any infection and no scarring.
She's been a trooper though. Even though it hurts for us to wipe at it and apply the lotion, we are still able to, even though she gets upset. I can only imagine how much it hurts. So we can't take her outside right now because the sun on the burn could make it worse. She is now back at the Children's Inn with us, but Poison Control and the doctors check on her regularly.
What a scare. This toy was made in China and put on the shelf by the store where I purchased it. I am now working on getting them to rectify the situation. I hope to get the toys pulled from the shelf for starts. I need answers and I'm going to their corporate offices for some. If I don't feel as though they have made their best effort to rectify the situation I will be seeking some legal advice and possibly going to the media. That should not have been on the shelves for starters, and who knows how many parents have bought that same flashlight for their child.

Thursday, October 11, 2007

No Nap for Katlyn

Today I was putting Katlyn for a much needed nap when I noticed one of Katlyn's doctors and a nurse at her window looking in. They stood there for a sec and then barged in. It was obvious that I was putting my little angel for a nap, but it was obvious they didn't care. Why they didn't care? They were coming to give us some fantastic news. Katlyn's t-cell function test results came back today and was an all time high of 28,000. YEAH!!!! The doctor told us that we could go back to Canada, we could stay at the Children's Inn, whatever we wanted. So here we are tonight with our little sweetie at the Children's Inn. We are in our glory and Katlyn, although very sleepy, is too.
So now we are faced with a decison of wheather we should stay here until the end of the month when her research blood is drawn, or go back to Canada for two and half weeks and come back. The thing is the government will be sending a special private aircraft to pick Katlyn up, and we don't want to put her in danger by sticking her on a commercial flight so soon afterwards. So we are checking to see if it is possible for the next research blood to be drawn in Canada, as a one time exception. I'm sure we will be able to id that is even an option, but there are rules and we need to find out if this is one of them.
Regardless, right now we are very happy. We have our little girl at the Children's Inn with us, and it feels really great. She had spent two nights here but the doctors felt it was in Katlyn's best interests to stay in the postive pressure room at the hospital because of her numbers. However after the results came back today they felt comfortable allowing her to come here. While Katlyn is here we don't allow her to go in any of the common areas. She is only in our room, which we have thourghouly cleaned from top to bottom. Besides that she goes outside and she will now make daily visits to the clinical centre, across the street.
It's hard to say right now when we will be coming back to Canada. Based on her numbers, she is ready to go now. However, we just want to make sure that first and foremost we put Katlyn's interests first.
She is doing great though. We still do have a long road ahead of us, but Katlyn is getting better and that's the most important thing. When we get back to Canada, Katlyn will be back at the IWK until she her ready clinically and we have a place safe enough for her to live. We have so much work to do, but we will get there.

Monday, October 8, 2007

Happy Thanksgiving

This weekend has been incredible. Yesterday was the Talladega Nascar race so Johnathan and I got the huge idea that we would clean our room at the Children's Inn from top to bottom and bring Katlyn over. She had a blast. It was so amazing. It was really nice to feel normal for the day. We had no worries really, it was actually pretty easy. As soon as Katlyn came in the room she pulled her socks off and took off, running back and forth. It was funny. She seems to like it here. I also cooked Katlyn's supper for the first time ever. I made chicken, potaoes and vegatbles. I was so nervous. I really think I washed my handss like 50 times. I knew her chicken was done cooking at a certain point, but I still cooked it for a little longer, just to make sure.
It was so nice for us to all be eating supper at the same time. It was so special. When it came time to bring Katlyn back to the hospital we didn't want to very badly. It felt so strange. It almost felt as though we had done something wrong and were only able to visitation with Katlyn. It was not a pleasant feeling.
This morning I discussed the idea of Katlyn spending the night with us at the Children's Inn, and the doctor was in favour of the idea. She said she felt very comfortable with us taking Katlyn and she knew that we were careful enough that she would be safe. So we were allowed to bring Katlyn to the Children's Inn again today.
We didn't have a nice turkey dinner and yes we are still not home, but today was so great. I don't know how I could come close to describing it. Basically we feel a little normal. We feel as though we had some privacy for once and weren't under a microscope all day. It was so nice to have our little girl running around playing and getting into everything. What joy!!!!!!!!
Now she's asleep and we are going to join her shortly. It's so nice to be able to sleep in the room all three of us together for once. A little bit of normalcy goes a long way. We will have to take her back early in the morning to meet with the doctors. We don't know if this will be a regular thing, or just a one shot deal. It's so great though and we know that someday soon, things will be normal. Katlyn is doing very well right now and she is going to get a little better everyday.
Happy Thanksgiving to Everyone.

Saturday, October 6, 2007

I know probably a lot of you have been waiting for on an update about if we're back in Canada or not. And for those of you who know we're not, you're waiting to hear why. It's actually rather complicated, but here goes. Katlyn's t-cell proliferation test came back and was 8,000, and she needed to be 10,000 in order to be discharged. We were extremely upset about the decision about not going home. You see, on one hand we have been told that there is a lot of probability of error with such test and they don't even necessarily know what this test means because it's not a commonly done test. On the other hand we have been told that we are unable to leave three times because of this test alone. Because Katlyn's t-cell function was so close to 10,000, we felt it wasn't enough to keep her here. Actually a lot of people were in agreement. Katlyn will not be literally going home. She will still be in isolation at the IWK in Halifax, N.S..
Now here's where it gets tricky. Because the doctors taking care of Katlyn are the ones who set up the protocol and all the guidelines for discharge, officially they have to stand by that. It does make sense. Where would they draw the line. What if the next child was say 7,000. They set those numbers up for a reason and they should stand by them. So we are still at the National Institute of Health. For how long? Who really knows. We know that they would like to keep Katlyn here to monitor her progress for as long as they can. We know that we are going to base our decisions about when we leave on Katlyn and what's best for her. If being here is the safest thing, then we'll have to stay here. Ultimately we would like to get Katlyn out of the hospital altogether. A hospital is not the best environment for an immune compromised child. At this time however, we don't have a safe place set up. Our hands are kind of tied right now. We are looking at the possibility of living with my mother, but we are still unsure if that's the best plan. We need to look at the cost of preparing the house, and if it's at all doable first of all, and if the fund raised dollars are going to be able to cover it. If it's a large costs it's doubtful that they will because there just isn't that much. We have been going at this for over a year now and to tell the truth, it has been a huge financial stress for us. Other than that we might have look at finding an apartment that will be safe enough for Katlyn to live. We have to make the smartest move for Katlyn. We have come to far to make any silly decisions. Besides that we will need to look for a new source of income. We have so much to do before Katlyn will be able to officially go home.
At this time I would like to thank my friend Sandy who is busy right now trying to organize a fundraising even for Katlyn. She seems really busy at it and I'm sure it's going to turn out to be a huge success. She's planning on having a raffle. Also a big thanks goes out to Duane from Duane's furniture in Woodstock, N.B., for donating a very nice wooden rocking chair for the event.
Katlyn is doing very well as usual. She is loving the time she gets exploring the outdoor. Today was a hot day so we waited until this evening before going out and it was great fun. Katlyn ran around with her little flashlights. I think this outing gave Katyln a new perspective on things a bit. Also when we came back I was undressing Katlyn from her dirty clothes and getting her ready for a bath. I asked her if she had fun and she immediately gripped on to me tightly, giving me one of the biggest hugs ever. She just kept saying "thank you, thank you." Then when Johnathan came in she blew some kisses his way again saying "thank you, thank you." It was so cute!!!
So tomorrow is a big day for us because we are going to begin potty training Katlyn. It seems like she's ready and we are able to devote our time 100% right now, so it's seems perfect. Hopefully she won't give us too hard a time. It's hard to say, but I think that a little girl who knows how to call 911 several times and program the hospital bed so that if get out of it the alarm will go off, is definitely smart enough. We love you Katlyn.

Wednesday, October 3, 2007

Monday, October 1, 2007

Day 131 Post Transplant

Today was a pretty wonderful day. Katlyn's neautrophils went up a bit on their own and her lympocytes also increased a bit. She was able to go outside, so of course that is where we spent most of our day. It was an adventure. Katlyn was the most excited I have ever seen her when I told her she could go outside. It seems as though every time we go outdoors, she gets more and more comfortable out there. Today she was all over the place exploring. She was hammering things with her sticks and now has a new found love for rocks. She played and played with rocks forever. She counted them, then counted them again. She scraped them along the walkway, so that she was drawing a little picture. She had so much fun. I think we spent about 5 hours out there today.
Tomorrow is IVIG day and that means it is going to not only prevent Katlyn from going outside, but also keep her very close to her IV pole, restricting her mobility and freedom.
So Wednesday we'll find out what Katlyn's t-cell function is and then we'll go from there. She is doing great though. I really think the gene therapy is working. Someday soon Katlyn is going to be able to lead a normal life.
I would also like to thank everyone that comes on here and reads Katlyn's blog and keeps us in their prayers. Having a sick child is a very stressful and heartbreaking situation to be in. Some days I find I have lows, whereas other days I have this happy buzz. It really is a rollar coaster we are riding on. But thank you to everyone who does continue to supprt us through this very difficult time. We really do need all of the help and support we can get, and we do appreciate every bit of it.
Thank you all.