Monday, June 28, 2010

Lab results

The endocrinologist called with Summer’s lab results from the tests we had run last week. Everything came back mostly normal.

Her sodium levels were normal, which indicates she still doesn’t have Diabetes Insipidus.

Her thyroid was slightly elevated, which is not an actual concern. If her thyroid levels had been affected by the surgery or tumor, we would have seen the opposite problem – her thyroid would have been low. An elevated thyroid level is common in someone who is or has been sick, which Summer had been the few days prior to the blood draw.

Her unstimulated morning cortisol level was in the normal range, so nothing to worry about (in theory) there. More about that later.

They tested two indicators of growth hormone, and one came back ever-so-slightly low, while the other was fine. The endocrinologist isn’t worried about this just yet because the ‘normal’ range is very loosely defined for Summer’s age group. Depending on whether she is going through a growth spurt at the time or a number of other things, the level might be a little high or low. We’ll just continue to monitor her growth closely, and keep checking her against the height and weight curves she’s been on to date.

So, her lab results came back with no major red flags. However, the endocrinologist was a little concerned about the fluctuating activity, fatigue and overall crankiness levels we had seen the oncologist about last week. She said that the cyclic nature of her behavior changes could be attributed to illness, as the oncologist explained, but it could also be a problem with her cortisol levels.

You’ll remember I said above that her cortisol level was in the normal range. Well, unstimulated, it is. But it could be that her body isn’t stimulating the production of additional cortisol when it needs it to deal with stress (not just stress as we adults think of it, but stress from too much physical activity, illness, or not getting enough sleep, etc).

We saw a huge example of this over the weekend. Summer played hard for two hours at a Gymboree birthday party, and then absolutely crashed afterward. She didn’t want anybody to look at or talk to her, except me, and was a complete wreck for about an hour and a half until she finally fell asleep. We’ll keep an eye out for these patterns over the coming week, and then we’ll check in with the endocrinologist to determine whether we need more tests.

I’m anxious to bring her back to her play class at MyGym because she loves them so much, and is always singing the “Hi, hi how do you do” and “Goodbye” songs to me, but we’ll need to get this stress-level stuff sorted out first. It would be too hard on her (and me!) to deal with that sort of aftermath every weekend.

The test they’d likely run would be the stimulation test like the one they did a few weeks back where they injected something into her body that should stimulate cortisol production, and then draw blood after 30 and 60 minutes to test the levels and see how she’s responding. It’s not a fun test, but a necessary evil.

If she does have a cortisol problem, we can supplement it with pills as needed to help get her what her body isn’t producing.

In other news, Summer continues to LOVE the swings and pretty much never wants to get off of them. She also now loves to jump off of things (eek!). I think these are pretty good signs that her vision is at least holding steady for now.

Wednesday, June 23, 2010

Labs and a visit with the Oncologist

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!

Monday, June 21, 2010

A fun Father's Day at the cabin

Jason managed to get a Saturday night off, so we spent the night and the cabin and hung out for Father's day. Here are a few of my favorites photos from the day. There will be many more to come on facebook once I get through them all - I'm a little snap-happy!

Also, don't forget to check out to see how we're raising money for the Pediatric Brain Tumor Research Fund. I'll be making special Team Summer t-shirts for everyone who walks with us.

Thursday, June 17, 2010

Team Summer - please join us!

I just signed up for the Run of Hope Seattle, benefiting the Pediatric Brain Tumor Research Fund for Children's Hospital in Seattle. Please consider joining Jason, Summer and me on the 3k walk to raise money for this great cause!

Find out more about the Research Fund, and the amazing stuff they've helped accomplish, at

You can join Team Summer or donate here:

Monday, June 14, 2010

Sometimes uneventful is great!

Summer had an endocrinology follow-up appointment this morning. Nothing major to report, just a little more information about additional testing and the potential for Summer to develop pituitary issues in the future.

The doctors asked lots of questions about things like Summer's appetite, thirst mechanism, urine output, activity level, etc., and seemed pleased with our answers. Our discharge summary showed Summer would be getting a few tests done today, but that didn't end up being the case.

The doctors asked us to come back early in the morning in about two weeks for those tests, as it's better to test before 8am. We don't have to make an appointment, but will just head in to the lab around 7:30 one day in the next couple of weeks and they'll do a few tests at that time.

They'll look at her thyroid function, growth hormone (indirectly measured by levels of IGF), and cortisol levels. For those who don't know, cortisol is released by your body to help cope with stress. If the initial cortisol test comes back with a value of less than 10, they'll have to do another stim test like the one she had several weeks ago. I hope that doesn't happen or that we get a different nurse because it was a disaster of a test.

They'll place an IV and administer medications through the IV that will trigger the stress response in the pituitary gland, which is to release a hormone that tells the adrenal gland to make cortisol. They'll then test the cortisol levels after 30 and 60 minutes by drawing blood back out of the IV. That's the part that didn't go so well last time, but I know better now. If they can't get blood out of the IV in the first try (or maybe I'll give them two), we'll get a regular blood draw with a needle from another vein. The IV is supposed to make it easier by reducing the number of pokes, but when you have to take it back out and squeeze blood out of the IV site, it ends up being a lot more traumatic! Poor Summer ended up with a seriously bruised foot, and an extra needle poke anyway last time.

If the results from the stim test show a cortisol level below 16, she'll need some hormone replacement therapy. If it's between 16 and 18 (it was 17.3 at the last, flubbed test), she'll only need to receive doses of synthetic cortisol during times of high physical stress - if she broke a bone or had a high fever. If it's above 18, she's considered in the clear.

The catch is that any of these test results (which have been great so far) could change at any time. For that reason, they'll continue to monitor her closely and check again every three months or so. Radiation therapy to that part of the brain also puts her at additional risk of developing some of those hormone problems in the months following treatment.

The great news is that they can replace any of the hormones she might end up not being able to produce on her own. The bad news is that she could end up on medication for the rest of her life. Not a huge deal, but a hassle none the less.

In other news, we got a $120,000 statement of benefits from the insurance company today. That puts the grand total, so far, at over $130,000 in medical bills. Luckily we have great insurance! :)