Monday, April 21, 2008

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.

Sunday, April 6, 2008

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.

Saturday, April 5, 2008

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.

Friday, April 4, 2008

With all honesty I am having a very difficult time right now. In the past I have found this Blog to be very helpful, so I guess trying to vent a bit might help. I am so absolutely utterly terrified right now. The position that we are in right now is just tearing me right up. There is absolutely nothing I can do. Nothing at all. The future is all I can think about. I think it is so hard right now because there are so many unknowns in our future, and not knowing if your daughter is going to be okay is so difficult.
Katlyn holds everything in my heart and sole. She is what makes me breathe and smile. She really truly is my everything. I'm sure people in our situation would feel the same way too. We are so close to so much danger and there is absolutely nothing we can do about it. I just want Katlyn safe. I need her here with me. Katlyn I just love you so much. I would trade places with you right now if I could. I really hate seeing my baby girl go through so much. It's hard.
She is only two-years-old and she has been through more than most adults. It just seems as though it's very difficult for her to get past all this sickness and live a normal healthy life.
I know the decision about what the plan for Katlyn will be, hasn't even been decided yet, but I'm just so scared.
We need a miracle. God please give us the strenghth to get through all of this. I know my baby girl is strong and I want to be right along side her, like I should. I'm Katlyn's mother. She is going to be okay. Katlyn is a fighter.
The photographer that was taking pictures of Katlyn's skin was so kind to take a couple family pics for us. They are beautiful. Well, except for my hair. They were long days at the hospital, but who cares about my hair. I just love the pictures.

So we just got back from spending the week at NIH and right now feel nothing but confusion, fustration and worry. They are thinking that these spots on Katlyn are something called Dermatofibrosarcoma Protruberans or DFSP. These type of tumors are very rare and so far they have not seen a patient keeping getting more, like Katlyn has. I think there's about 10 or so of them now. Usually this tumor takes like 20 to 30 years to start becoming a growth. They mentioned that with Katlyn that could be difference between them taking so long to begin that process. Once they do start growing, they do grow very quickly and there is concern that they could metastasize to other parts of the body, the most common place being the lungs.
At this time they are still uncertain about what we are going to do to remove and control these tumors. Katlyn's doctors will have a metting in two weeks with the tumor board and hopefully a decision can be made so we can start the process of getting Katlyn better. While we were there Katlyn met with a surgeon, dermatologists and several oncologists. They will also be present at this meeting. It's possible Katlyn may undergo radiation, chemotherapy or surgically removing them, or a combination. In the past they see the most sucess with removing them, with a less chance of reoccurence.
The trouble is that Katlyn has so many of these. They think it's possible that this type of tumor could be linked to her condition. So far, they have found 5 other patients with ADA SCID who have had DFSP as well. All the other patients have had stronger immune systems than Katlyn's is. The tumors were found after their treatment and the immune system had started to restore itself. Some believe the immune system does play a role in tumor growth, and that the immune system is very important. Katlyn's doctor mentioned the possibility of starting Katlyn back up on PEG ADA, to help her immune system now. PEG ADA is not a long term fix and tests have shown the effects of PEG ADA do wear off. If they were to use PEG ADA, there is a great chance that it would basically void the gene therapy that Katlyn had. They do not know if a second time at gene therapy is a option or not. At this time they are not doing it multiple times, and Katlyn having these tumors could disqualify her anyhow. Her doctor also mentioned a bone marrow transplant might also be an option.
We are so stressed right now. We are so scared. I don't want anything bad to happen to my sweet little girl. I don't want her to have to go through anything else, with all that she has been through. But more importantly, I just don't want to lose her. It almost seems as though similar emotions that we had in the beginning are coming back, but this time are worse. We now know with experience, the kinds of things we are looking at. There's just no other way to put it. WE ARE SCARED!!!
Since Katlyn has been sick, I have really been able to see the power of prayer. Please keep our little girl in your prayers.