Who was Sadie?
Sadie was our daughter. At 15 she was diagnosed with a very malignant brain tumor. Despite radiation and chemotherapy the tumor continued to grow,
and she passed away 13 months later.
Why this website?
During Sadie's illness we scoured the Internet searching for information about brain tumors, treatments, and, once she was terminal, other people's final days.
All the personal stories we found were very comforting to us: not because they offered us hope, but because they helped us understand what Sadie was going through. This
site is our way of contributing to others walking this frightening path. We hope Sadie's site helps make the journey a little less lonely.
What kind of tumor did Sadie have?
We aren't sure. Her MRIs suggested glioblastoma multiforme (GBM), but her biopsy was inconclusive. After a second and third opinion, her medical team
concluded that she had either GBM or a supratentorial PNET. The biopsy seemed to favor PNET, and that's what they treated her for. Her post-treatment MRIs, and her ultimate outcome, seemed to indicate it was GBM after all.
Comment or question?
Feel free to contact us.
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 us 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.