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… →

From the diary

My eldest child has a brain tumor. In fact, she has several probably cancerous areas spread throughout her brain: one very large ball in the right hemisphere, and smeary areas elsewhere. We don't yet know exactly what she has, and making a diagnosis has turned out to be hard. Her neurologist describes her situation as "atypical, unusual, and baffling."

Though a definite diagnosis has eluded us, one thing is certain: my fifteen-year-old daughter has aggressive primary malignant brain tumors. The pathologist at Johns Hopkins grades them as 4+ on a 1-4 severity scale. They are not PNETs or germ cell tumors. The doctors feel they are probably gliomas of some kind. Alas, gliomatosis cerebri is still in the running.

The written report from Johns Hopkins arrived yesterday. My daughter's tumors have the radiologic signature of gliomatosis cerebri, but Johns Hopkins felt it could also be supratentorial PNET. The good news is that some people do survive s-PNET. Pretty much no one survives gliomatosis cerebri.

Read Sadie’s story

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.

Update: new research since Sadie's death has defined a "GBM with PNET-like components" variant.

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.