MRI results

The MRI itself went well. Summer had to get a finger poke in the morning for endocrine labs, which is never fun, but that was the only time she really got upset today. They made her sleeping gas strawberry scented, which she seemed to enjoy - she was still talking about it when she woke up after the MRI.

The results of the MRI, however, are mixed. The good news is that the mass portion of the cyst doesn't seem to have grown much, if at all. The bad news is that the cyst has grown significantly. It looks to be about three times bigger than it was before her surgery, when she was practically blind. We're not sure how it could possibly not be affecting her vision now, but somehow it doesn't seem to be.

Jason noticed that the cyst seems to be thinner than before, more like a deflated balloon, so perhaps it's not putting as much pressure on the brain and optic nerves, even though it's spread out and touching more of the surrounding tissue than before.

The tumor board at Seattle Children's Hospital meets Wednesday afternoons, so thankfully we won't have to wait long to find out more. They'll talk about her then with all the relevant doctors (oncologists, neurosurgeons, radiologists, endocrinologists, etc) and get back to us later today, probably sometime after 2:30 or 3pm.

It sounds like they will recommend surgery in the next couple of days to drain the cyst, and possibly to install a shunt with a reservoir that will collect the fluid and make it easier to drain as needed in the future.  We are under the impression that this will be a less invasive procedure than before, but the neurosurgeon will tell us more once they decide on the best course of action.

Dr. Geyer, her oncologist, also mentioned the possibility of a more aggressive surgery to remove more of the cyst wall and the tumor. I shared with him the advice I received from Dr. Merchant, Chief Radiation Oncologist at St Jude's, which is to avoid such a surgery because it has a much higher risk of affecting her quality of life, and didn't necessarily provide more benefit than radiation without the more aggressive surgery. Dr. Geyer agreed.

We also talked with Dr. Geyer about the protocol Dr. Merchant is developing for proton therapy on children under the age of three, and the possibility of us participating in that group. He felt that there probably (he hasn't reviewed the protocol since it's not out yet) isn't a difference in the radiation treatment itself, or a very minor difference, but that there definitely is benefit in the more intensive monitoring that likely comes with the study, and that they could learn from Summer (since she's in a very small minority of children diagnosed with this type of brain tumor so young). It would be great to know that they can use what they learn from her to help other kids in the future.

Dr. Geyer did mention that it might be prudent to move forward with radiation now, but that we have time to think about it since the mass itself doesn't seem to have changed much. Regardless, the cyst needs to be drained now. He didn't give a definite recommendation on the radiation front, and said again that they'd talk it over at the tumor board.

I emailed Dr. Merchant all of this info just a few minutes ago, so we'll see what he has to say as well. I'll post again after we hear back from the tumor board this afternoon.