Big Decision
We have one of the biggest decisions to make and that is how to go about treating Kylee's cancer. Typical treatment is radiation to the entire head and spine. With Kylee being so delayed we are a little worried about doing that and so were several of the Dr's. Then we saw a psychologist who saw Kylee for about 10 minutes never once awake during those 10 minutes and asked me about 20 questions if I was lucky. Based on that he decided that Kylee was done developing and that we should go ahead with the full head and spine radiation. I said I completely disagree. Do you know anything about 1P36. Do you know that many of these children learn to do lots of things other kids do but at a much slower rate. So you want to tell me at the age of 3 she is done. REALLY are you SERIOUS. Well needless to say he doesn't want to see us again. Can't imagine why...maybe because I would show up with lots of data to show that my daughter isn't done. Show him how much progress she made in school in just a few months with a tumor growing in her head. So with that being said Jason and I just don't feel right about doing the full head and spine radiation. We feel like she has lots of progression in her and just don't want to take that chance. Unless they would give me some guarantee on Wednesday I don't think they will be changing our minds.
Appointments
Wednesday we head back down to see the genetic dr and to meet with oncology one more time. After that I think we have to make our decision and start. They said they would like to start the process at least 1 month from the surgery date and that will be on Monday. So not much time.
Thank you
We continue to receive so much support both emotional, financially and physically. We could never be able to thank everyone enough for everything you have done for us. This is a very difficult time for our family but we will get thru it one step at a time.
Kylee is going to kick cancer princess style.....she is going to kick cancers butt and she is going to look good doing it :)
2 comments:
I love your postitive attitude. You are an awesome mother and I know you guys will make the right decision...Kylee is in God's hands and he'll help guide your family and medical staff in the right direction. I love the way you handled the psychologist...I'm glad you stood your grounds. I hate doctors like him who acts like they know it all then feels intimidated and defensive vs grateful for the info. Thanks for keeping us updated. We will continue to pray for your sweet love.
God bless,
Sherry C. (mom of Kaylee 23mo/1p36 & Allison 6 yrs)
Oh my heart aches for your family. Hang in there you were absolutley right fighting that doctor. Stick with your gut feel on all of it. You know her better than any doctor. You will be in our prayers.
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