Radiation and chemotherapy begin

March 2006

On March 20, Sadie had surgery to implant a Port-A-Cath in her chest. Two days later she began 6.5 weeks of radiation therapy, combined with daily carboplatin and weekly vincristine. She did not receive treatments on weekends or holidays.

Sadie received targeted radiation to the top right tumor site for five days, then 22 days of full craniospinal radiation (covering her entire head and spine), then five more targeted treatments. Her last day of treatment was May 5.

Early side effects

March–April 2006

The first little clumps of Sadie’s hair began to fall out about two weeks into treatment. (Radiation / chemotherapy)
Sadie gradually felt more and more nauseated; about four weeks in she began vomiting, at first once a day but up to four or five times a day by the end. (Radiation / chemotherapy)
Sadie’s skin on her head and along her spine became red and started peeling, much like a sunburn. (Radiation)
Sadie developed ‘chipmunk cheeks’, acne on her face and chest, and stretch marks over much of her body. (Dexamethasone)
Sadie lost nearly twenty pounds during treatment. At the end she was barely eating: one french fry or one sip of milk on a good day. (Radiation / chemotherapy)
Sadie’s short-term memory started to worsen; she would forget recent visitors, what she last ate. (Radiation / tumor)
Sadie stopped having periods during treatment as a result of the assault on her bone marrow. They resumed (briefly) nine months later. (Radiation / chemotherapy)

Treatment ends

May 5, 2006

Sadie was worn out by the end of treatment, too tired even to celebrate making it so far on her last day of therapy. But we were all happy to mark the start of her recovery and begin counting down to the next MRI. Had her treatment worked?

Read on… →

From the diary

She’s had two blood transfusions in the past week for her very low red blood cell count. They’ve given her more energy. She’s lost weight; I can feel sharp hipbones under her pants. Anorexia has kicked in as promised: she hasn’t eaten in four days. We worked very hard to get seven peas, two bites of chicken, two bites of stewed apple, and one bite of rice into her over the course of the day.

Her memory was shockingly bad today. We’ve noticed lapses in her short-term recall, and she’s talked about it some herself. But today was worse than we’d seen before.

She got a DuoDerm patch at the base of her spine, to protect the skin there. It’s starting to get red from all the friction of moving around in bed. Her back is peeling like a hefty sunburn; her scalp is mostly peeled out.

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.