The news is...no news.

We didn't learn anything definitive from this morning's scan.

The cyst is slightly smaller than we saw in her last scan on 11/3. While it's always good to see the cyst smaller, that doesn't really come as a surprise to us since Dr Browd drew 4mL of fluid right after her last scan. What we can't tell is whether the reduction in size is equivalent to 4mL of fluid, or if it re-accumulated some fluid after the draw.

If you read my last post, you'll know that we anticipated this might be a problem. Dr Geyer had thought that if it had been filling up as quickly as it has done in the past, we would have been able to see it. Perhaps it's slowing down, but it's really impossible to know at this point.

So, we'll have another HASTE MRI on 12/8 that will give us a better apples-to-apples comparison.

The HASTE MRI was very quick. And thank goodness for that - Summer hated the entire 30 seconds of it. But after that, she calmed right down. Apparently the entire thing was MY fault because the second she was done she said "All done. I can see my daddy now please?" From leaving Jason in the waiting room to walking back out to meet him, we were probably gone 2-3 minutes total.

Last week, we got a call from endocrinology to go over her lab results from 11/3. Everything looked normal (even her growth factors, amazingly enough), except her thyroid stimulating hormone (TSH) is still high, which means her thyroid is not functioning at 100%. This is a little bit contrary to what we'd heard before (from the HemeOnc nurse), but I figure we should trust the endocrinologist to know best about the endocrine function...

The TSH is pretty borderline high, but we've been monitoring it for six months now and it's continually high. Since good thyroid function is especially important for brain development at this age, they decided we should start her on some thyroid medication. She takes half of a tiny pill first thing every morning. Piece of cake. They'll retest her TSH levels after she's been on the medication for a couple of weeks, just to make sure it's working.

They also asked us to come in for another stim test - I'm not sure that I wrote about the actual test itself last time we had this done, but it was horrid. Assuming it all goes well, it shouldn't be too bad, but it didn't go very well last time. She'll have an IV injection to stimulate cortisol production, and then blood draws (theoretically from the same IV...but that didn't really work out so well last time) every 30 and 60 minutes to see how she's responding. That test will be this coming Wednesday, and we'll get the results back at our endo appointment on 11/24.

More waiting...

Dr Geyer called us this morning to relay the discussion from yesterday's tumor board meeting. As I suspected, we're going to have a few more days of uncertainty about next steps.

We want to make sure the Interferon treatment actually failed before moving on to radiation. There wouldn't have been any point in trying Interferon if we weren't willing to give it the time it needs to work.

On Monday, Summer will have the HASTE MRI to check cyst size again. At that point, if they see noticeable growth, we'll probably head for radiation. If not, it may be that the Interferon treatment did work after all, and we'll continue to monitor with frequent scans.

While we agree this is the right approach, I have one concern about it - they drew fluid out of the cyst right after the MRI last week, so we don't have an apples to apples comparison point for cyst size. Will they really be able to tell whether there is any increase in fluid by comparing the 11/3 MRI with the 11/15 MRI? Seems like a little bit of guess work will be involved since they'll have to factor in the 4mL they withdrew.

I mentioned this to Dr Geyer and he thinks they will be able to tell, especially if it's filling up as quickly as it has in the past. But, this is a relatively short time frame between MRIs--not even two weeks--so I'm not sure I'll be satisfied with the results if, come 11/15, they see no change.

Given that bit of uncertainty, if the scan shows no change, we're going to push for the next MRI to be sooner than six weeks out. Since the cyst accumulated ~3 mL in less than four weeks, I don't want to wait any longer than that for the next scan.

I'll post more after our appointment on Monday.

Ophthalmology appointment and the waiting game

Summer's ophthalmology appointment was this morning. Summer was not exactly in a mood to put up with their tests, but they at least got some of what they needed. She's really not a morning person. No idea where she got that from... ;)

Now that she's a bit older, they use a different test to check her visual acuity--how well she sees when she's focused on something. This was more like the standard eye chart test, but with pictures instead of letters and only one appearing on the screen at a time.

She refused to let them test each eye individually, but with both eyes together she got up to 20/50 before giving up--not, I don't think, because she couldn't see the shapes, but because she was cranky and frustrated.

Even 20/50 is an improvement from her last eye exam, and well within the normal range for her age. I'm guessing her vision is even a little better than that.

They dilated her eyes and could see no swelling on the optic nerve that would indicate pressure from the cyst, so that's good. As before, the nerves showed a little pallor which indicates some damage, so unfortunately they haven't magically repaired themselves. Her left eye appears to be slightly worse than the right.

They asked us to come in in two weeks for another eye exam when she's (hopefully) feeling a little more co-operative, and they sent us home with a few eye patches and a chart to practice with.

We also received a call from HemeOnc to cancel our appointment with Dr Geyer tomorrow afternoon. He wanted more time to talk to the different providers in more depth after Tumor Board, so he's going to call us Thursday morning instead.

The scheduler also mentioned that they are waiting for the HASTE MRI results too, so although she didn't come out and say it, I got the distinct impression that we should expect much in the way of a firm plan when we do talk to Dr Geyer on Thursday morning.

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.

This darn thing is persistent

The tumor mass showed no growth, but the cyst did. It is not as big as before the last surgery, but it's definitely bigger than her last scan a month ago.

Dr Browd drew out a little more than 4mL of fluid today to shrink it back down. They will talk about her at tumor board next Wednesday to come up with a recommendation for next steps.