I was given a lot of "advice", telling me the correct way to feel, act, and respond toward God. But parents need to handle these situations in whatever manner they can. There is not a "right" or "wrong" way.
I saw many parents truly acting out the phrase "placing it all in God's hands". They had a peace that God would work all things out, and guide the doctors to make the right decisions.
I never questioned their peace. It was real. I could see it in their eyes. Unfortunately, I never experienced it. What I felt was an intense fire, a need to fight. I needed to act. I needed to battle this monster for my son. I needed to talk to every doctor, every patient, every researcher. I needed to understand the options, understand the treatments, argue and debate the different scenarios. I could not accept that the closest hospital was automatically the best hospital...that the oncologist on call was the best doctor...that the insurance approved protocol was the best procedure. I needed to find the best options. Several people told me this showed a lack of faith, that I needed to trust that God has provided the best doctors. They said I needed to stop searching and questioning. I received intense criticism for my actions, much of it from people very close to me.
But I do not think I was wrong. Nor do I think this was a lack of faith. You need to follow your heart. There are times when God wants us to sit back and trust. But there are also times when He expects us to fight. The correct answer is known only by you. No one can tell you how you should respond.
My faith went through a lot of changes during this experience. Many have told me that they know God's will, but I believe they are deceiving themselves. Many have accused me of losing my faith. But I disagree. My faith is not the same as before, but I would suggest it is actually much stronger. And I would suggest that it is much more real.