Surgery Tuesday, Boston the week after Christmas

After my last post, I got a call from Dr Geyer to fill us in on the tumor board's discussion about Summer yesterday afternoon. He had talked to them about periodically draining the cyst up until (and probably during) radiation to keep it small. The smaller the area to be radiated, the better.

In their meeting, Dr Browd suggested instead converting her Ommaya reservoir into a permanent ventriculoperitoneal (VP) shunt that would continuously drain into her abdominal cavity and prevent the cyst from filling up at all. The board agreed that this was a good idea - not only will it keep the cyst at its smallest for radiation, it will alleviate the trauma caused to her brain by the cyst repeatedly growing and shrinking as it fills and is drained.

Dr Geyer gave us a heads up that they were recommending this so we wouldn't be surprised when neurosurgery called to schedule the surgery, but didn't have any details about the surgery itself. He assumed it would be similar to her prior surgeries. I was pretty skeptical at first - I wasn't sure that it was really worth another invasive surgery and all the risks that go with it - so when the neurosurgery scheduler called this morning to set up the surgery, I asked her to have Dr Browd call so we could talk it through.

I spoke with Dr Browd this afternoon and he explained the surgery in a little more detail. He will re-open her scalp along the same incision line (probably not the entire thing, just a smaller part around the reservoir), pop off the Ommaya reservoir and attach tubing. The tubing will be fed down behind her ear, down her neck and into her abdominal cavity, all underneath the skin. He will make a minor incision at her belly button to help guide the tubing down into her abdominal cavity. He wouldn't need to open her skull at all.

The recovery is quick - she'll likely go home the next day, unless she is having trouble managing pain, in which case they might keep her an extra night. After talking to Dr Browd, we felt much better about the surgery and have decided to go through with it. It will provide us some relief, not having to stress about the cyst filling up again, and it will make radiation safer and more accurate without the cyst size continually changing.

We'll have some pre-op appointments on Monday, and the surgery itself will be Tuesday, probably early afternoon. We'll find out the scheduled time at the appointments on Monday.

I also spoke with Anne at Mass. General, and we now have a loose timeline laid out. We will fly out to Boston the week after Christmas for a few days of preparatory appointments. Then there will be a break (a week to a week-and-a-half) before radiation actually starts. During that time, they build custom equipment specifically designed for Summer and her tumor. We haven't decided whether Summer and I will come home during that break or not. The actual treatment will then start the second week of January and continue for six weeks.

I'll have more specific dates and an answer from Christopher's Haven on whether they'll have a place for us sometime tomorrow.