Friday, July 3, 2015

Pride and Oncologist

"Pride cometh before a fall." Words spoken so often they are now a cliche. Why? They are true. We have been met with great and fierceful resistance by our Oncologist specifically but also by our Genetics doctor on referrals and second opinions. We were told outright last week to stop getting second opinions and trust the team they have assembled at Childrens.

The girls at Stanford

At Childrens they had Gracie as a risk for quadriplegic, brain tumor, cancerous death. The terms DIPG were tossed out along with suggestions that chemo might be in her future. We were told of brain surgeries that would remove bone that were necessary and needed to happen as soon as possible. So soon in fact that the Oncologist did not want us to leave the hospital with out talking to the surgeon on the day of the MRI.

They should know by now that I am a well educated, well informed, well connected mother. That I never do anything with out a second opinion, that I am not vague, that I will fight for my child. You do not tell me no. So I packed up the car and took my babies to the best doctor on the west coast.

Guess what. He was wrong. Gracie does not need to be rushed into surgery. She can wait and have another MRI in three months to see if there is improvement or not. She does not have a DIPG or brain tumors. She does have the same optic nerve tumors as Emma and other issues requiring therapies and tests and monitoring but she will not die or become a quadraplegic. The sky is not falling.
The American Girl store trip before appt

What if I had trusted in their team? What if I did blindly follow? Gracie would be undergoing an unneccesary and risky brain surgery. Not cool. Makes you wonder if there have been any other mistakes? Ya, us too. Stanford will be going through Emma's records and test results with a fine toothed comb. I want answers and I want them from the best.

You can bet that there will be a conversation at chemo this Monday and perhaps more.

Moving forward there will be more doctor appointments for Gracie. First to a very specialized eye doctor at Stanford to evaluate her optic nerve tumors, we are hoping she will not go blind like Emma. While we are there he will see Emma as well. Second, Gracie will begin several different therapies. Our hope is that her issues will become unnoticeable. Emma is also starting Occupational Therapy for her prematurity issues. The drive to Stanford is brutal. It took over four hours for us to get home. It will be really rough to cart the kids back and forth often but it is the best thing for the girls so it is what we will do.

To sum it up our trip to Standford was fruitful. It gave us hope, something I felt I lost several months back. For the first time in two years I feel like I have a chance of seeing all three of my children to survive to adulthood, that makes me cry happy tears. The war is not won but we have gained ground. You are going down cancer dragon. If God is with us, who can be against us?

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