Saturday, March 22, 2008
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.