Seattle Children’s Update

by Stephanie

So we spent a LOT of time today in Seattle. 

Here is what we know.  They don’t really know what it is.  It appears to be an Optic Glioma.  But it doesn’t fit the bill 100%.  It still could be a Hammertoba (That probably isn’t the correct spelling).  Or something else.  So tomorrow at 9:30am they are going to do a biopsy.  First to figure out what it is because second, they don’t feel like they have the time to wait and try something that doesn’t work.  Her sight has been effected drastically and they don’t want it to be further damaged.  SO, hopefully Monday we will have the results.  With either of the above options radiation or chemotherapy look like the best options. 

With radiation: Her pituitary gland would be destroyed.  So she would be on meds for that the rest of her life.  It would start being effective right away, so more of her site would/could be saved.  It would cause some damage to the rest of her brain, mainly memory and reasoning. 

With Chemo: It takes longer to become effective.  She has to go in once a week for a year for the meds.  They would insert a devise into her chest that allows them to put the drip into rather than doing an IV every week.  The medicine only effects the tumor, nothing else.

To us it comes down to brain vs. sight.  Right now brain wins.  We will see

Either way, she will loose her hair. 

The school is helping us set up a 504 plan for her.  This will help with tutors, and extra aids they might need to help her. 

We will keep you updated as we go……