Sadie's brain tumor

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.

Unexpectedly stable

September 22, 2006 - January 19, 2007

Sadie amazed everyone by remaining stable for nearly four months. We kept analyzing every little headache, every moment of aphasia, every tiny little departure from her usual routines for signs the end was approaching. After all, she'd been given a prognosis of weeks rather than months.

Some good news

December 6, 2006 and January 3, 2007

Nine months after radiation and chemo shut her periods down, Sadie had some vaginal spotting: a sign her body was well on its way to complete recovery from treatment. Exactly four weeks later she bled again, a little more than the spotting on December 6, but not yet a full-blown period.

A surprising MRI

December 29, 2006

Sadie was so stable we began to wonder what was going on in her brain. We requested another MRI, three months after her last one. It showed something unexpected and remarkable: the two existing tumors hadn't changed at all. That explained Sadie's stability. Her doctor told us to decrease her dexamethasone to 6 mg per day (from 9 mg), since the tumor apparently wasn't creating additional pressure.

It wasn't all good news, however. Sadie had developed a new tumor, this one on the back of her medulla oblongata. Her doctors and we assumed it was a progression of the existing cancer, connected to the existing tumors by tendrils too faint to see on the MRI.

New symptoms

January 19, 2007

After so many months of stability, Sadie began to decline at an alarmingly rapid pace. Over the past few weeks she'd mentioned increasing double vision and a sense her aphasia had gotten worse, and her appetite had decreased somewhat. But these changes were too subtle to trigger warning bells for us. On January 19, however, Sadie suddenly got worse: she started vomiting, at first once every day or two, then twice, then three times. Within a couple of days she was sleeping nearly all day, eating next to nothing, and barely able to stand with support.

Sadie's doctor prescribed the maximum dose of Zofran (ondansetron), 8 mg three times a day, to help her vomiting. It worked for 36 hours. Then it helped for increasingly short periods of time: 6 hours, 5 hours, 3 hours. Her doctor increased her dexamethasone to 9 mg per day, and combined with the Zofran this kept her vomiting at bay, though she still felt nauseated in waves throughout the day, sometimes asking for a bucket but not throwing up.

The end of Sadie's tunnel was coming into view.