Tuesday, September 9, 2008

So since the last time I've made an entry Katlyn's Chemotherapy has been put on hold. I guess the biggest reason being that the doctors want to make sure they are making the right decision with her treatment. There is a clinic at Sainte-Justine Hospital in Montreal that deals with DFSP. Because they have the most reported cases of children diagnosed with this cancer, her team of doctors at the IWK and NIH made a decision that they should have a look at Katlyn's case. They have already requested photos of Katlyn's tumors and we're just waiting to see what the next step is. It's possible they may want to personally see our little girl, or it may be they agree with Gleevic being our best option. Or maybe they'll be able to give their recommendation just from speaking with her doctors and reviewing the photos. Who knows??? But until they make a decision we have no choice but to sit back and wait.
I'm not really sure myself what would be the best treatment plan for Katlyn. She has at least 12 maybe 13 of these tumors, so surgery seems unrealistic at this time. She is only two-years-old and I don't like the idea of her having so many large holes in her body. We're talking about three cm borders around the tumors and deep. Gleevic seems like a good idea to control the tumors, maybe shrinking some and making some disappear. Maybe then surgery would be a lot more appealing. But on the same hand Gleevic could make Katlyn's counts drop. Although her counts are far from normal, we have waited 16 months for them to get where they are today. I can see why this is such a difficult decision for her doctors. There has never been a reported case of multiple primary tumors like Katlyn before. I do know however, that because of how careful everyone is being they will make the right desicion. God will help point us in the right direction and he will give Katlyn the strenghth to beat the odds once again.
When something like this happens to your child I think it really puts your faith to the test. There has been so many times I have been so angry losing all faith. From what I have seen with Katlyn is a blessing and a miracle and definitely makes my faith stronger than ever. The big guy will help us through this difficult time.
It is really setting in that our little girl has cancer. I've tried my best to educate myself about DFSP, the same way I did with her SCID...and truth be told it does help. I can sit back in the dark or I can familiraize myslef with what is going on here. I rather know everything I can. Cancer is a scarey word, but the more you educate yourself I think the better you can deal with the facts. I contacted the cancer society and they gave me a phone number for the cancer hotline. They are a lifeline, available with information and support anytime I need it.
Don't get me worng though. It still scares me and saddens me that after all Katlyn has already been through in her short little life, she still has to deal with this. I do have a lot of confidence in her doctors at the IWK and NIH, and I feel they will be there for Katlyn in everyway...just like they always have. Katlyn's doctors are the best and I am so grateful to all of them for helping Katlyn surpass all she already has and and helping again with her DFSP.
Katlyn is clinically doing very well. Her counts are still about the same, but don't seem to drop quite as low as before. Her neautrophils average around 1500 and her lymphocytes around 200. All in all, she is getting strong everday and someday she will be deemed healthy.
The house is comeing along nicely. There is currently a large whole in the ground where our house is soon going to be. I think it is going to go up pretty quickly. We learned last evening that we will be using insulated concrete. This is great news, since the block is a lot more energy efficient. It's my understanding that it is concrete surrounded by foam, to basically seal our home. John understands it more than I do. I just know that he is extremely excited.
I have done a little fundraising for our home with habitat for humanity so far and it's really difficult to understand that all the fundraising is being done for our home. All the volunteers are there to help us. What a great bunch of people. I know I will continue to work with habitat for a long time to come. It's so much fun working with such terrific kind people for such a wonderful cause. I look foward to not only haveing our home built, but helping with the next home as well.