I posted this on the forum that I mentioned yesterday....
Let me start by saying that this is a hard decision... No, it is the hardest. I'm sure you get it.
A few things have factored into what Tom and I have decided. We will go ahead with treatment as planned for Rachael.
1. I could seek 2nd, 3rd and 4th opinions and I would still be in this same place of having to decide because there will not be a consensus.
2. This is MY child and though I know it isn’t “easy” for someone else to make a decision for her, I'm the one who wants her here until she is old more than anyone else. Studies and experts and other survivors may not agree on what is the best course, but the doctor who has met her and looked me in the eye has said that this will give her the BEST SHOT. I spoke with him tonight and he told me that even if it gives her until 2012 until re-occurrence instead of 2011 we will have one more year not only with her, but also one more year for research to catch up with the disease.
3. She is five. Quality over quantity looks different when you are 50, 60, 70 or five. We want quantity and because of her age, she has a better chance of the quality not suffering like it might if she were older.
4. I had peace about the decision to go with the prescribed treatment until I began questioning it. I believe in questioning and researching and learning as much as one can before making any decision - and even more so for one so monumental. Having said that, every ounce of peace I had went away when I started questioning it. After speaking with her doctor, hearing what he had to say and deciding to continue with his recommendation the peace has returned. I can only believe, with hundreds of people praying for us, that this peace is something to be trusted.
Being a parent who believes in co-sleeping, extended breastfeeding, delaying immunizations, avoiding medications and eating whole foods (when the kids would eat them anyway!) the decision to have her lymph nodes removed and then giving her interferon is not one I go into lightly. I wish it were cut and dry but it is not. We have to make the best decision we can and like Catherine said, we can't look back. If we don't do this, I KNOW I will continue to look over my shoulder.
I thank you all for your prayers, well wishes and support.