How fast time flies!
I can't believe Summer is three months post-op today. Then again, some days it seems like it all happened ages ago.
No major news to report - we're still dealing with a bit of random moodiness and crankiness, especially when routines are broken or on very active days. The fatigue-laden days are a thing of the past (knock on wood!). We haven't been able to get any definitive answers on why any of that is/was happening. It could be simply that she's almost two!
For the past few weeks, Summer's sleep patterns have been seriously disrupted - apparently this is a common complaint for Craniopharyngioma patients. She wakes up frequently, about three times a night on average, and is completely wide awake. I'll hear "Mama! Mom! Ya hear me? Come get me!" in a far-too-cheerful voice over the baby monitor. She's very polite in the middle of the night though, always asking for a "bottle, please" or "Monsters, please." If only we could get her to remember those manners during the day!
In fact, we had an hour-long (no joke!) tantrum the other day when she refused to say please in demanding her binky. 10 minutes in, I realized I couldn't give in or we'd be paying for it for years, so she screamed for an hour before finally getting it herself. Poor little thing had a sore throat the rest of the day. I wonder where she got that stubbornness from? ;)
Obviously, she continues to be quite spunky. Lately, she has taken to kicking Jason and I out of her room so she can play by herself. If I follow her in there, she'll open the door and say 'Go Mama. Go first.' and shoo me out the door so she can close it behind me. The teenage years don't seem so far away when she does things like that!
We're anxiously awaiting her next MRI on August 11th, and will post an update with results that afternoon.
Thursday, July 29, 2010
Thursday, July 1, 2010
Our funny child
Summer has had some serious spunk the last few days. She's kept us laughing constantly, and I thought I'd share some light-hearted stories with you, since most everything else I post is of a much heavier nature. Hopefully it will make you laugh too, and give those of you who have never met Summer an idea of what she's like.
The little thief
Jason brought Summer outside with him while he was working in the yard the other day. After a too-quiet minute or so, he turned around to look for her. During his search - a very brief one, since our yard is fully fenced and not exactly huge - he noticed that his very large can of Arnold Palmer, which he'd left open on the front porch, was also missing. He walked in the house to find Summer sitting on the couch, sipping his drink, like it was the most natural thing in the world. Upon seeing him, she exclaimed "mmm...it's delicious!"
I wish I could have seen that tiny girl climb up on our couch with an opened can of iced tea/lemonade, without spilling a drop!
Renaming things
Summer has decided, now that she's nearing two, that she's simply too mature to call Jason and me 'Daddy' and 'Mommy.' Out of nowhere, she started referring to us as 'Mom' and 'Dad.' There's no way she could be growing up that fast! We weren't expecting such formal titles for at least a couple more years.
I sat her down for a serious conversation, and set out to explain that our names are 'Mommy' and 'Daddy,' at least for now. Those of you who have (or have had) kids this age know how quickly these conversation can turn into negotiation. Now I'm 'Mama.' She never reverts - from that point on, it's been 'Mama' with not a single slip back to 'Mommy.'
We're still working on 'Dad.'
Among other things she's recently renamed are:
Driving back from the mall the other day, I passed some goldfish crackers back to Summer to snack on in her car seat. She's normally quite chatty in the car, so after a moment of silence I tilted down my rear-view mirror to sneak a peek at her. In that short time, she'd managed to pull off her shoes and socks, and was busy wedging goldfish in between her toes. Once one foot was done, it looked like she was wearing the foam toe separaters used during a pedicure. I asked what she was doing and just got a huge, goldfish-crumb filled smile back in response.
Playground etiquette
Summer has been very interested in the other kids at the park lately, and she's beginning to learn playground etiquette. For a while, we had a bossy little thing on our hands. She was constantly trying to direct the other kids, saying "come on! I'll show you!" or "follow me!" all the time. After a few rounds of getting frustrated that the five-year-old kids weren't listening and obeying the every command of a not quite two-year-old, she gave up on the bossiness and now will just join in whatever activity the other kids are doing.
Last night, she was in a loop with a pair of three-year-old twins - up the ladder, down the slide, up the ladder, down the slide - and was having a great time. The twins were getting ready to lap her, but Summer was quick to stand up for herself, telling the girl who tried to pass her on the ladder, in a perfect scolding tone, "wait your turn!" I think maybe she's heard me say that just a few times... :)
No! Monsters!!!
Jason, Summer and I sat down on the couch to watch a movie together last night. She tends to latch on to one thing at a time, and her most recent favorite is Monsters, Inc. We thought we'd try Toy Story 2 to see if Summer might be interested in branching out a little.
The second the movie started playing, and she realized it wasn't Monsters, Inc., she burst out yelling "No! Monsters!!!" We tried talking to her about what was going on in the movie - "Oooh, look! A puppy! Do you remember that puppy? You saw him at Target..." - to distract her and see if we could keep going with Toy Story. We tried hard - Jason's sanity was at stake after seeing Monsters, Inc. many, many times - but it was to no avail. After a few minutes, she started a chant: "Monsters! Monsters! Monsters!" until we finally gave in and swapped out the DVDs. Some battles just aren't worth it!
The little thief
Jason brought Summer outside with him while he was working in the yard the other day. After a too-quiet minute or so, he turned around to look for her. During his search - a very brief one, since our yard is fully fenced and not exactly huge - he noticed that his very large can of Arnold Palmer, which he'd left open on the front porch, was also missing. He walked in the house to find Summer sitting on the couch, sipping his drink, like it was the most natural thing in the world. Upon seeing him, she exclaimed "mmm...it's delicious!"
I wish I could have seen that tiny girl climb up on our couch with an opened can of iced tea/lemonade, without spilling a drop!
Renaming things
Summer has decided, now that she's nearing two, that she's simply too mature to call Jason and me 'Daddy' and 'Mommy.' Out of nowhere, she started referring to us as 'Mom' and 'Dad.' There's no way she could be growing up that fast! We weren't expecting such formal titles for at least a couple more years.
I sat her down for a serious conversation, and set out to explain that our names are 'Mommy' and 'Daddy,' at least for now. Those of you who have (or have had) kids this age know how quickly these conversation can turn into negotiation. Now I'm 'Mama.' She never reverts - from that point on, it's been 'Mama' with not a single slip back to 'Mommy.'
We're still working on 'Dad.'
Among other things she's recently renamed are:
- 'Bankley,' her favorite blanket which has been 'blanky' until recently
- 'Meece' for Miso - or Sophie, for that matter. She often calls them both 'Meece'
Driving back from the mall the other day, I passed some goldfish crackers back to Summer to snack on in her car seat. She's normally quite chatty in the car, so after a moment of silence I tilted down my rear-view mirror to sneak a peek at her. In that short time, she'd managed to pull off her shoes and socks, and was busy wedging goldfish in between her toes. Once one foot was done, it looked like she was wearing the foam toe separaters used during a pedicure. I asked what she was doing and just got a huge, goldfish-crumb filled smile back in response.
Playground etiquette
Summer has been very interested in the other kids at the park lately, and she's beginning to learn playground etiquette. For a while, we had a bossy little thing on our hands. She was constantly trying to direct the other kids, saying "come on! I'll show you!" or "follow me!" all the time. After a few rounds of getting frustrated that the five-year-old kids weren't listening and obeying the every command of a not quite two-year-old, she gave up on the bossiness and now will just join in whatever activity the other kids are doing.
Last night, she was in a loop with a pair of three-year-old twins - up the ladder, down the slide, up the ladder, down the slide - and was having a great time. The twins were getting ready to lap her, but Summer was quick to stand up for herself, telling the girl who tried to pass her on the ladder, in a perfect scolding tone, "wait your turn!" I think maybe she's heard me say that just a few times... :)
No! Monsters!!!
Jason, Summer and I sat down on the couch to watch a movie together last night. She tends to latch on to one thing at a time, and her most recent favorite is Monsters, Inc. We thought we'd try Toy Story 2 to see if Summer might be interested in branching out a little.
The second the movie started playing, and she realized it wasn't Monsters, Inc., she burst out yelling "No! Monsters!!!" We tried talking to her about what was going on in the movie - "Oooh, look! A puppy! Do you remember that puppy? You saw him at Target..." - to distract her and see if we could keep going with Toy Story. We tried hard - Jason's sanity was at stake after seeing Monsters, Inc. many, many times - but it was to no avail. After a few minutes, she started a chant: "Monsters! Monsters! Monsters!" until we finally gave in and swapped out the DVDs. Some battles just aren't worth it!
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.
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!
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 http://www.firstgiving.com/teamsummer 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.
Also, don't forget to check out http://www.firstgiving.com/teamsummer 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 http://www.pbtrf.org/
You can join Team Summer or donate here: http://www.firstgiving.com/teamsummer
Find out more about the Research Fund, and the amazing stuff they've helped accomplish, at http://www.pbtrf.org/
You can join Team Summer or donate here: http://www.firstgiving.com/teamsummer
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! :)
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! :)
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