This morning we brought Summer in to Children’s for some endocrinology labs and a check-in with the Oncologist.
Over the last couple of weeks, Jason and I had started to get a little concerned about Summer. She would have a couple of days where she was pretty darn irritable (pretty normal for a teething almost two-year-old) acting tired all the time (growth spurt time?), and constantly complaining of hunger with no real appetite for eating (again, normal toddler behavior – their appetites can fluctuate quite a bit). There was nothing majorly wrong, but a few little things that were enough to worry us once we took them all into account. If she didn't have a tumor, we wouldn’t be thinking twice about it and would just chalk it up to Summer being a teething, growing toddler.
Just when I’d put a call in to the HemeOnc nurse, Summer would be back to her normal self the next day. After a few rounds of this cycle, where it seemed like she was just out to prove me wrong, she started displaying the same behavior but with a fever added. Yesterday, after my third conversation with the nurse in two weeks, they decided we should bring her in to see the doctor just to be safe.
We were to bring Summer in for the endocrinology labs I wrote about after her last appointment sometime before the 28th anyway, so they found an early morning HemeOnc appointment for us today and we got to take care of everything at once.
We don’t have the lab results in yet, but I’ll post again once we have them. They’re testing hormone levels and other indicators of pituitary problems that could be caused by tumor growth – you can read more about what they’re testing for in my previous post. It was just a simple blood draw this time around.
For the HemeOnc appointment, we met with Dr. Leary, whom we had met during our hospital stay but isn’t Summer’s main oncologist. She asked a lot of questions and checked Summer out. Neurologically, Summer looks good, and she felt really reassured after seeing her. They aren’t equipped to test her vision in that office, but Jason and I haven’t noticed any change in vision. Her peripheral does seem to be a little off, but we knew that would be the case after her VEP test.
We have our own little home checks for Summer’s vision too. I’m always asking Summer to put coins in her money jar, and I get her on the swings at least once a week (three times in the last three days, in fact). These are things she couldn’t, or didn’t want to, do right before we found out about the tumor.
Dr. Leary explained that Summer’s behavior changes are likely the result of her body fighting viruses that just aren’t presenting any major symptoms. We did see the fever in the most recent round, but no other symptoms of a virus like a runny nose or cough. She explained that kids have been exposed to about 100 viruses by the time they reach age 10. That’s 10 a year on average, but she also thinks that more of it happens on the younger end of that 0-10 age range. Most kids don’t appear to be sick that often, but their blood shows the evidence. We just don’t see the illness every time.
She said that Summer’s normal days in between the bad ones are a strong indicator that this is the case. We should worry if she ever gets to the point where she’s consistently tired and cranky without any good days to break it up.
We spent the rest of the appointment talking more about the surgery and future treatments – Dr. Leary was great about answering the little questions that have popped up for us since we had last seen Dr. Geyer.
I had always wondered how exactly Dr. Browd had drained the cyst. I wasn’t sure if they had hacked it to pieces, leaving it virtually no chance of filling back up, or if they’d essentially poked it with a needle and it could easily fill back up. She explained that they punched a bunch of holes in it, so it’s not likely that it would fill up again anytime soon, if ever. That was reassuring to hear, since we knew the cyst could fill up much faster than the tumor would grow. I always worry that the cyst will fill up in between MRIs and cause problems that won’t be detected right away, but it sounds as though that probability is pretty low.
We also talked about what would happen if the cyst is the part that comes back faster. Radiation will not reduce the size of the cyst. It will stop it from continuing to grow and re-fill, but it wouldn’t take care of any problems that the filling cyst could potentially cause (like the vision changes we saw before). So, if the cyst fills up but the tumor isn’t growing, or isn’t growing at an alarming rate, radiation would NOT be an immediate necessity. They’d likely do another surgical procedure to drain it again and buy us more time until radiation.
Jason and I both felt much better after having seen the doctor, but we’ll still be counting the days until her next MRI (late July/early August) when we can see what’s going on in that little head of hers!