Saturday, March 22, 2008

Happy Easter

Katlyn is doing very well. She has actually just been upgraded from her highchair to a big girl arrangement. I turned around yesterday to find that Katlyn was about to climb out of her highchair. I was right there!!! She decided she wanted out, and as independent as she is, she was getting out. Luckily the change was simple. Katlyn highchair transforms into a little table and chair for a toddler. She really seems to like sitting there. She doesn't constantly say "Help!! I'm stuck!!!" It has been normal terrible two-year -old stuff around here. Katlyn has been really putting me to the test lately. It is actually very exciting to see what she will come up with next. I love it. She is very excited for the Easter bunny tomorrow. She knows chocolate will be available, and she's game.
We were suppose to be leaving for Maryland on Monday but that has recently changed. We will be leaving on April 1 instead. When we get there Katlyn will be meeting with a multidisciplinary team which includes a dermatologist, pathologist, oncologist and a surgeon. These specialist combined, make up the tumour board at NIH. When we get there, these specialsts will review all of the facts about these little skin marks that Katlyn has. They will also examine her and then have a meeting to discuss what they think they are seeing. It is possible that Katlyn may have a type of tumour that has never been documented before, including all patients not just SCID.
So we have no idea how long we will be staying at NIH this time. We don't know if Katlyn will be having these removed, and if so when? We are planning on staying until Friday, April 4 at this point. That however, is subject to change at anytime. We could be leaving sooner or maybe later.
This is putting a lot of stress on us right now. I think they believe that these tumours are benign. The scary thing is that immune compromised people are more likely to develop cancer than someone who is normal and healthy. So if these marks are in fact tumours. We would want to deal with them as soon as possible, because we do not want them to become malignant.
The part of all of this that is the hardest to believe, is that these marks have been present on Katlyn from before she was diagnosed and she has been getting more and more of them. It scares me to think that because they seemed so insignificant, they were almost not biopsied. Because Katlyn is immune compromised, doctors felt that checking them would pose a greater risk to Katlyn's life than just leaving them. Fortunately, one was biopsied and now we can work at fixing this problem any way we can. We are very lucky Katlyn's doctors are so great. We know they will take care of her, find out as much information as they can, and will do what needs to be done to make sure Katlyn is safe.
I will post as much information about what's going on just as soon as we learn something new.

Saturday, March 15, 2008

We just recently came back from a checkup to the IWK and will be leaving on the 24th to go to NIH. I thought now would be a great time to update about what has been going on. As I had mentioned before, Katlyn's skin had been sent to the expert in spindle cell tumors at Harvard. Well, apparently the expert says he does not think they are spindle cell tumors, but he does not know what they are. So at this time we still have no idea what the marks on Katlyn are. We only know that NIH sent her slides to Nebraska, the reason is still to be seen. Hopefully we'll have some answers when we get to NIH.
Since my last time writing on Katlyn's blog, her research blood results have come back. It seems as though Katlyn is making milestones with her counts now. She was at an all time high of 1500 neautrophils. Katlyn has never been that high on her own, without any drugs to push her counts up. The very exciting part about this number, is that 1500 neautrophils is a normal number. Katlyn has always had trouble with her neautrophils, so this is very exciting for us. Neautrophils will help Katlyn protect herself from bacteria.
Also, Katlyn's lymphocytes have been staying around 200, which as I mentioned before is the highest Katlyn has ever been. A count of 4,000 would be normal for Katlyn, but Katlyn used to have no lymphocytes at all. This is definitely a start. These cells will give Katlyn what she needs to fight a virus and such.
The ADA gene is still present in Katlyn as well. She is measuring 17%, which is where she has been. And the t-cell proliferation was around 17,000. This is the number that kept us in Maryland for so long. Katlyn had to be 10,000 in order to leave isolation.
All of this news has been very exciting for us. It is very encouraging to see things that we have never seen before.
Katlyn is doing extremely well. She is growing and learning at a normal pace, just like any other 2-year-old. She is keeping us very busy, expecially now that she has entered the terrible twos. I love it!!!!
We are starting to get in a routine around here, which makes it a lot easier to get things done. John works constantly and we miss him, but I know he just wants to take care of his family. And he is doing a great job at that.

Saturday, March 1, 2008

Update on Skin (well sort of)

Katlyn oftem picks up large items and carries them around. She's very strong.

My little lady

Playing with her little house

Just being adorable

I'm very sorry that it has taken me awhile to update Katlyn's blog. Johnathan is on nights right now, and it makes it extremly difficult for me. The computer is in the living room, where John is sleeping and I do not want to make noise and wake him up. As anyone with children knows, whereever you go your child follows. Katlyn is a very loud child, and I love it that she's so vocal. I just want daddy to be able to get his rest as well. Katlyn is eating her lunch happily right now, so I thought I would take a few minutes and update what has been going on.
As I had mentioned before, NIH had sent Katlyn's skin slide away to Boston to be analized by who they consider to be the expert in the world on spindle cell tumors. Well he took a look at the biopsy and said in his opinion it wasn't spindle cell tumors, but he had no idea what is was. I'm not really sure what to think of all that. I got the message from Katlyn's doctor in Halifax from her doctor at NIH. I think the best thing to do is just wait until we get back to NIH to discuss it and we'll know more what to make of it. Apparently they sent Katlyn's skin slide to Nebraska, but I don't know why or who is in Nebraska. I'm really just trying my best to put the whole thing out of my mind and just try to focus on day to day life.
As far as Katlyn's counts go she has been running about the same number recently, always around 200 lympocytes and recently being her highest of 218. Unfortunatley when we last checked Katlyn's lympocytes have dropped to 90. We were surprised by this result and hoping that it woudl have been higher. So we will take Katlyn for bloodwork on Monday and hopefully it has gone back up.
It seems as though this whole process is just taking so long, which it is. It's interesting though. I was taking to a doctor that had looked over Katlyn when she was first diagnosed and he was very surprised that Katlyn was doing so well. He said that she has come a long ways. A lympocyte count for someone Katlyn's age should be around 4,000 and like I mentioned she has been around 200. Well he said that Katlyn had none when he last saw her. I didn't know this. GO KATLYN. We still not heard anything about her research blood results, so we may just find out at her next appointment at the IWK. She we go there on the 12th and then to Maryland on the 24th. It is going to be a busy month.
OUr days are pretty much routine now. It is a hard adjustment with John changing from ddays to nights, but we're getting used to it. We are so proud of him. He has been working at his new job for a about a month now and he's got three raises already. Way to go Daddy. He does seem to enjoy it there too. We do miss him though since he works 12 hour shifts and when he is home he is sleeping. He just wants to take care of his family the best he can, and for that we are extremly thankful. Thanks so much Daddy.
Katlyn and I have been doing a lot of new things lately. She started to climb up the stairs yesterday. We have a lot of stair up to our apartment and she walked up all of them all by herself (I was right there though in case she lost her balance). Also Katlyn has been baking a lot with me and just recently made cupcakes all my herself. I did all the measuring and she added all ingredients to the bowl and with my assistance we mixed the cupcakes up. It was so cute. She had flour all over the place. She carefully lined the muffin trays and we put them in the oven. She was very surprised when they came out and thrilled when she learned she was going to be able to decorate them. SHe had complete control of icing and sprinkles. It was bliss. Also Katlyn has been helping me make supper too. I find it works great in making her interested in what we are going to have. One day she helped me prepare a shepard's pie and she did really good eating it for supper.
Other than that, Katlyn is just trying to be a normal 2-year-old. She runs around, plays in small tight spots and makes life so much better.
We love you so much sweety.
Katlyn in her apron and ready to start cooking

This is the Dora and Deigo rescue centre that Katlyn and I built. She loves it.

Katlyn's first brown bagged lunch

Digging for her sandwhich that she helped me make