How do I even describe our day yesterday?
We met with our oncologist at Stanford yesterday morning. He gave us the official diagnosis: congenital glioblastoma multiforme. This is an extremely rare type of tumor, only seen in a few babies every year. It is highly malignant and aggressive, meaning it spreads quickly and is hard to eradicate. He gave us a copy of a study he was a part of, and it discussed the grim reality we are facing - most babies with this tumor are gone within weeks after diagnosis.
He discussed the "menu" of treatment options: surgery, chemo or both. It was quite obvious to us that chemo alone will not be effective against such a large tumor. The neurosurgeon we had been working with had never presented surgery as a viable option. However, the oncologist suggested we visit another surgeon across the bay who might be willing to look at Scarlett's scans and give us his opinion. He made a quick call, and we suddenly had an appointment that afternoon with the neurosurgeon at Children's Hospital of Oakland. The oncologist got us a CD-ROM of her MRI and sent us on our way, telling us to call him once we have made a decision.
As we drove across the bay, we started reading over the surgery report we were passing to the surgeon. It was sickly fascinating to read the exact details of Scarlett's surgery, from the types of blades and placement of blue towels to the color of the tumor as it pouched out of the skull. It ended with "no complications."
The neurosurgeon looked at Scarlett's MRI and surgery report briefly before coming to speak to us. He immediately launched into his plan: a radical surgery to remove every speck of tumor he could, followed by chemotherapy at Stanford. The surgery is risky and long; 20 hours at least, and possibly continued in a second surgery depending on how she reacts. A few weeks of recovery in the hospital before beginning regular chemo treatments. He wants her admitted by the end of the week, with surgery on Monday or Tuesday.
He said it was our only chance to save her. He feels that, unless we go forward with surgery, chemo is a waste, not to bother.
We were shocked. We had been prepared for no option. We had not expected a chance.
We have consulted with our other doctors at Stanford, and they agree we should go forward. Today we will schedule her surgery for the first days of 2011.