Monday, November 5, 2012

Wait and Wait

We heard from neuro-oncology today.  Scarlett's case was discussed at tumor board - a team of doctors from oncology, neurosurgery and other specialties that consult on all the brain tumor patients - and they overwhelmingly feel that we need a biopsy before we can effectively treat whatever this is.  Because this growth is not behaving like the type of tumor she had before, they don't want to jump to conclusions and treat with the big guns (radiation) unless it is absolutely necessary.  A biopsy, where her neurosurgeon could remove at least a portion of the growth and send it in for analysis, would give us a much more specific target to shoot for.  If he can get it all out, and biopsy shows it is lower-grade than the previous tumor, then she may not need any further treatment.

The neurosurgeon hasn't gotten back to anyone yet, so we're still not sure what his take is.  If he thinks he can safely get to it, he will remove whatever it is soon, and we will determine next steps based on biopsy results.  If he thinks it is too small, we will likely wait two months for another MRI.  If there is continued growth, the biosy moves forward; if no growth, we wait another three months.

Waiting is my least favorite option, even though it is the easiest on Scarlett for the time being.  It feels powerless, and I prefer to feel like we are in some kind of control here (though, really, we never are.)  The doctors will make their decision based on the best information they have, and we have to trust that they know the best road. 

Either way, Scarlett is still her wild little self.  She has recently learned to go down the two steps from our kitchen to living room; today she worked really hard to go up those same steps with just a little help.  There is just no containing her anymore.  She also got her second haircut this weekend.

This weekend, Chris and I will attend our first pediatric brain tumor conference.  The Pablove Foundation is hosting their first Pediatric Brain Tumor Symposium this weekend at Children's Hospital Los Angeles.  We were lucky enough to be able to get a scholarship through the foundation for a hotel room at the JW Marriott LA Live, so it should be a great weekend.  Scarlett will stay home with Grandma and Grandpa, so it will be our first baby-free weekend in two years, and the first traveling we have done in many years.  It's not much of a vacation from our stresses, since we'll be talking brain tumors all weekend, but we will enjoy it nonetheless.


April said...

I am sorry you are having to play the waiting game, but it is actually kind of a relief to know this is growing so slowly. Ty and enjoy your baby-free weekend. You two need some time alone together too.

child of God said...

Waiting just stinks! Praying for patience

I hope your weekend will be full of new information and a bit of rest.

Praying and praying!

Unknown said...

I'm sorry you have to just wait :( I am still praying for you and your family. ((hugs))

Anonymous said...

All I can say is hang in there. Easier said than done. We are currently waiting for our Scarlett's MRI on the 27th so I feel your pain. Waiting sucks but what can we do, right? Sending positive thoughts your way!!!