Back Where We Started

So over the last two years, Julianne has been scouring the Internet for any and all treatment options for Isabella.  As I’ve written, her tumor is extremely rare and very few people have worked with it before.  Just to show how rare, she only found one case study that referenced her particular tumor type where the patient responded to chemotherapy, even after recurrence.

As we got the news of Isabella’s recurrence, we have been working with our oncologist on different types of chemo treatments that we can try (informally, they’re called cocktails as they mix and match several types of chemotherapy to see what gets the best response).  Of course, we brought up that case study for the single patient and our oncologist informed us that she knew the doctor that worked on that case study and that he had just moved to Tufts Medical Center in Boston.  We contacted him and he agreed to see us and look at Isabella’s case.

We met with him for a couple hours two weeks ago where we basically went through our entire history of treatment and he briefly looked at the latest scans.  The good news is that he still hasn’t ruled out radiation necrosis.  We also spoke about what our options are if it is decided that it is tumor.  He mentioned that although Isabella’s tumor type may be rare, it appears to be of a type that responds to chemo, even after recurrence.  So we were inspired that we should never give up when treating this tumor.

So here we are, more than three months after a routine follow up MRI showed some new areas of concern in Isabella’s head.  Back then, we weren’t sure if it was tumor or radiation changes, and today, we’re still not sure.  We still don’t have a treatment