In the last two weeks, Summer has been seen by Ophthalmology and Endocrinology for follow-ups. Ophthalmology was on the 15th, so I'll start there. I don't know what it is, but there's something about those eye appointments that makes Summer exceptionally uncooperative right from the start, so that's always fun.
We started with a vision check, similar to the letter chart used for adults but with pictures on a TV screen. We were able to get her to cooperate enough to tell that she hasn't gotten any worse from the last time, but we couldn't tell for sure how good her vision actually is as she lost interest really quickly.
Using both eyes, her vision is at least 20/40 which is still within normal for her age.
Her right eye is significantly worse than her left. They can see as much by the coloring of her optic nerves (the nerves for the right eye are paler, indicating damage), and we've only ever gotten measurements as high as 20/100 on her right eye. It might be slightly better, but it's tough to get her to continue the test for very long when we have to hold our hand or a patch over her good eye. I can't really blame her, though - why would you want to have something covering your eye when it immediately makes it so you can't see as well?
We're going to practice at home, try again in August to see if she'll cooperate a little better, and we'll go from there. We talked about possibly having her wear a patch over her good eye from time to time, in an attempt to force the nerves on the right eye to work harder and improve. It doesn't always work, but it would be worth a try. I'm hoping we can sell that to her as "exercises" to make her eye better...we'll see how well that goes over. I'm not holding my breath.
They also tried to get an image of the nerves using a camera set up I'm pretty sure I've described before, although I can't find the post. The short of it is that she cooperated really well, but just isn't quite old enough to follow the very specific instructions (she has to stare straight at a specific dot or line long enough for it to get a picture without looking at anything else), so it didn't work. Maybe next time. That would give us the most accurate way to compare the actual state of her optic nerves from visit to visit.
They also dilated her eyes and looked at the nerves with a magnifying glass. Getting the drops in was a battle, but she did remarkably well with letting Dr Baran look into her eyes once they were dilated, so the appointment ended on an up note.
This morning we saw Dr Pihoker in Endocrinology to check in and review the lab results from the blood they drew back on 6/2 when she had her MRI. Summer was very cooperative and chatty at this appointment. We all really liked the doctor who came in before Dr Pihoker to do an initial check up and collect our questions/concerns. I wish I could remember her name!
Summer's thyroid levels look good, so we're medicating at the right levels at least for now, although that could change as effects from the radiation become apparent.
Her growth hormone factors, however, are low. We knew that one was only a matter of time. Summer now weighs 12kg (26.4lbs) and is 89cm (35") tall, so she has been growing and gaining weight at a reasonable rate, although not quite as quickly as they would probably see in a normal child.
They don't usually do anything about low growth hormone within six months after treatment, especially not when we've only had one low reading. They will test again in three months (during her next MRI in late Aug/early Sept) and assuming the levels are still low we would probably start growth hormone shortly thereafter.
We talked a little bit about what will happen at that time, including additional stimulation testing if required by the insurance company and an x-ray of Summer's hand to look at her bone growth and help calculate her target height. Unfortunately, there's no oral form of the hormone available, so Jason and I will have to be trained on administering daily injections...ugh. We were assured it's a small needle and people do really well with it. But considering that Summer is about as trim as they come, I'm sure it won't be fun for her and we'll have many battles about it for a while. I suppose it will be a good thing to start it while I'm home on maternity leave because it will probably take two of us to get the shot done until she gets used to it.
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Thursday, June 23, 2011
Saturday, June 4, 2011
Results from Thursday's MRI
Summer had an MRI on Thursday morning and, short of everything miraculously disappearing as if it had never been there, we couldn't have hoped for better results. The cyst is smaller than it was at her March 4th scan (stable from a HASTE MRI on 4/18), and the mass has actually shrunk by about 20%!
The doctors kept telling us it might not shrink at all, that if the radiation worked it would (hopefully) just not get any bigger. It's a good sign that everything is headed in the right direction, and that the radiation is working to control at least the mass portion of the tumor. In theory, the less mass there is, the less fluid can be generated for the cyst, but it still might be years before we can say anything even remotely definitive about the effect on the cyst.
As far as the MRI itself, Summer did extremely well with the pre-scan stuff - weight check (11.7kg or 25.74lbs, up 1kg in the last couple of months, after holding her weight at 10.7ish kg for an entire year), blood pressure, temp, etc and even asked for the anesthesiologist right when we got into the MRI triage area so she could tell him she wanted strawberry flavored gas. Jason and I can't help but laugh a little to watch this pint-size kid directing the nurses.
She went under very well, with no fuss about the face mask. Unfortunately, she didn't wake up quite as cheerful as she went down. This post is so late in coming because she was quite the handful for the entire rest of the day. Re-programming her shunt was a struggle, and we didn't get to have much of a conversation with the Heme-Onc nurse practitioner about the results. Luckily they were good results so we didn't have many questions!
Summer's next MRI will be three months out, but we'll have check-ins with ophthalmology and endocrinology in the meantime. I'm not really worried about her vision, given that the tumor and cyst have either been holding stable or getting smaller since her last eye exam. But I am especially curious to find out how her endocrinology blood work (drawn on Thursday) comes back, since we have been told it's only a matter of time before she stops producing growth and thyroid stimulating hormones.
After this clean scan I'm hoping for a bit of breathing room where I am not constantly questioning whether the shunt has failed or the cyst is growing. Last time, we made it about six weeks before I cracked and demanded another scan. I have a tough time trusting that certain changes (bigger tantrums, sometimes stumbling over words, etc.) are part of normal developmental phases and not because of the tumor. Hopefully it will only get easier as we have more good scans under our belt and Summer gets better at articulating what she's feeling.
The doctors kept telling us it might not shrink at all, that if the radiation worked it would (hopefully) just not get any bigger. It's a good sign that everything is headed in the right direction, and that the radiation is working to control at least the mass portion of the tumor. In theory, the less mass there is, the less fluid can be generated for the cyst, but it still might be years before we can say anything even remotely definitive about the effect on the cyst.
As far as the MRI itself, Summer did extremely well with the pre-scan stuff - weight check (11.7kg or 25.74lbs, up 1kg in the last couple of months, after holding her weight at 10.7ish kg for an entire year), blood pressure, temp, etc and even asked for the anesthesiologist right when we got into the MRI triage area so she could tell him she wanted strawberry flavored gas. Jason and I can't help but laugh a little to watch this pint-size kid directing the nurses.
She went under very well, with no fuss about the face mask. Unfortunately, she didn't wake up quite as cheerful as she went down. This post is so late in coming because she was quite the handful for the entire rest of the day. Re-programming her shunt was a struggle, and we didn't get to have much of a conversation with the Heme-Onc nurse practitioner about the results. Luckily they were good results so we didn't have many questions!
Summer's next MRI will be three months out, but we'll have check-ins with ophthalmology and endocrinology in the meantime. I'm not really worried about her vision, given that the tumor and cyst have either been holding stable or getting smaller since her last eye exam. But I am especially curious to find out how her endocrinology blood work (drawn on Thursday) comes back, since we have been told it's only a matter of time before she stops producing growth and thyroid stimulating hormones.
After this clean scan I'm hoping for a bit of breathing room where I am not constantly questioning whether the shunt has failed or the cyst is growing. Last time, we made it about six weeks before I cracked and demanded another scan. I have a tough time trusting that certain changes (bigger tantrums, sometimes stumbling over words, etc.) are part of normal developmental phases and not because of the tumor. Hopefully it will only get easier as we have more good scans under our belt and Summer gets better at articulating what she's feeling.