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The first signs of trouble

January 2006

Sadie stumbled on the stairs at school in early January. It seemed like she’d injured her right knee, so she started physical therapy. After four weeks her knee was getting worse, not better, and she was starting to have trouble with her right hand. On February 6, the physical therapist sent Sadie for an immediate MRI.

Multiple sclerosis

February 2006

The MRI revealed a large mass in Sadie’s right frontal lobe, as well as some smaller smeary areas in her left hemisphere. The radiologist felt it looked most like MS, not a tumor, based on the multiple lesions that were smeary and not solid. Sadie started on five days of dexamethasone, a steroid that should stop her current MS attack.

By now, Sadie was no longer able to stand and walk alone; her right leg wouldn’t cooperate with her. Her right hand was in better shape than her leg, but still impaired. Sadie moved over to the rehab wing of the hospital to try to recover as much functionality as possible on her right side.

Brain tumor

March 2006

After two weeks on the rehab floor, Sadie wasn’t improving. Her doctors ordered another MRI on February 27. Contrary to expectations, Sadie’s lesions had grown, which meant she didn’t have MS. Sadie underwent a biopsy of the top right mass four weeks after her first MRI.

Sadie’s pathologist identified the tumor tissue as very aggressively malignant (stage IV), but he wasn’t able to determine precisely what kind of tumor she had. In the end three different pathologists around the world took a shot at Sadie’s tumor; none could positively identify it. It contained characteristics of both a glioblastoma multiforme (GBM) and a supratentorial PNET.
Three weeks after the biopsy, we finally had a diagnosis (PNET) and a treatment plan.

Read on… →