A little more about Wednesday's appointment and what's next

As I mentioned in my brief post on Wednesday, the MRI showed no change to the tumor mass but an increase in cyst volume since the last MRI on 10/4. The cyst was still nowhere near as big as it was in August before her second surgery, thankfully.

During the appointment, we looked at the scans and reviewed the blood work results that had come back so far. Her thyroid function was slightly elevated, as it has been for all of the labs over the past six months. This could mean that she has lost some pituitary function and her thyroid is working a little harder to compensate, which is exactly what it's supposed to do.

Her growth hormone indicator levels had not yet come back, but I suspect they'll be low considering that she hasn't grown or gained weight in quite a while. Where she used to be 65th percentile for height and 10th for weight, she is now off the charts on the low end for both. Growth hormone production is something we knew she'd lose eventually - whether from the tumor itself or radiation - so this is not really a surprise at all.

Her neurosurgeon, Dr Browd drew just over 4mL of fluid out through the Ommaya reservoir while we were there. As a point of comparison, they drew 10mL out before the first Interferon treatment, and 1 - 1.5mL prior to each Interferon injection. The last time they drew fluid out was 10/11, and they then injected 1mL of Interferon back in, so the cyst had produced about 3mL in three weeks and two days.

There's a possibility we haven't given it enough time, and that perhaps the cyst produced 3mL of fluid in the first week or two after treatment and has since stopped. However, the more likely case is that it simply didn't work. Summer will have a HASTE MRI  (a very quick MRI with no anesthesia - comparable to the quality of a CT but with no radiation exposure) on Monday 11/15 to confirm whether or not the cyst is continuing to produce fluid.

We'll have quite a few appointments over the course of the next few weeks:

Tues 11/9 - ophthalmology at Bellevue (just dilation and check-up, no VEP)

Wed 11/10 - tumor board will review her case, and we'll meet with Dr Geyer to review tumor board discussion

Mon 11/15 - HASTE MRI, then review of scans with the nurse practitioner

Wed 11/24 - endocrinology with Dr Pihoker

We'll also be coordinating with Children's to send everything over to Boston again and they'll review Summer's case again on the 17th.

Dr Browd, indicated that his preference would be to send her for radiation now, since this cyst has repeatedly shown us it won't act the way we want it to. There are a few other options on the table though, so we'll see what they recommend after the board meets on Wednesday. It wouldn't be the first time we got ourselves in the radiation mindset and found something else to try first.

As always, I'll post more when I know more.