I've been wanting to write this post for a while, and couldn't think of a better time than on Thanksgiving. Of course that didn't happen, and here I am getting around to it five days later...
I'm part of an email support group for Craniopharyngioma patients and their caregivers. Lately it's been pretty active, as there are unfortunately three new members who were recently diagnosed with the same tumor as Summer. I can't give any specifics, but between their stories and those who reply with their own, I've been reminded of how bad it could have been for us.
There are a whole bunch of scary things we avoided by pure luck. Well, luck and the help of our amazing team at Seattle Children's. I've been reading about three-month long stays in the ICU, life-threatening conditions caused by brain tumor removal surgeries, significant short-term memory loss and hallucinations, among other things.
The problems many of these families face are the direct result of aggressive surgeries to remove the tumor. It makes me so angry to hear these stories knowing what I know now - that the outcomes of aggressive surgery and minimal surgery combined with radiation (like Summer had) are virtually identical, except for the huge quality of life problems that come with the former. But apparently, not all doctors know that. In fact, it seems it's often the Craniopharyngioma 'experts' who recommend aggressive surgery, simply because it's how they've been doing it for years and years.
Thankfully, Summer's neurosurgeon knew better. We are so lucky that he was the one on call that night exactly one year and seven months ago, when Summer had her first surgery. We didn't have time to research anything before jumping right in, since there was literally an hour and a half between diagnosis and surgery. We simply took his word for it that minimal surgery, with the main goal of decompressing the cyst, not removing the tumor, was the way to go. I don't think we even asked if there were any other options. We were too emotional and in too much shock to do anything but try to absorb what he told us. Thankfully, his recommendation seems to have been the right one for us. I am thankful for that every day.
It's not often I have time to sit and reflect on everything we've been through since Summer's diagnosis. And honestly, most of the time I try not to because it's just too much. But this time of year, and with these reminders of how lucky we are, how could I not?
I hope you all had a wonderful Thanksgiving! We have some appointments coming up tomorrow and Thursday, so I'll write a medical update post later this week.
Tuesday, November 29, 2011
Tuesday, September 27, 2011
2011 Run of Hope
This past Saturday, we walked in our second Run of Hope, a fundraising event benefiting Seattle Children's Hospital and the Pediatric Brain Tumor Research Fund.
We owe a huge thank you to everyone who helped us raise so much more than we hoped! Team Summer raised $8,599 - much more than our goal of $5,000! The event raised $199,070 total. For more information about the PBTRF and what this money goes toward, visit their website: http://www.pbtrf.org/
Here are some photos from the big day:
We owe a huge thank you to everyone who helped us raise so much more than we hoped! Team Summer raised $8,599 - much more than our goal of $5,000! The event raised $199,070 total. For more information about the PBTRF and what this money goes toward, visit their website: http://www.pbtrf.org/
Here are some photos from the big day:
Thursday, September 22, 2011
Growth hormone update
Summer's growth hormone results finally came back and the numbers were low, as expected, so we are moving forward with the growth hormone process. It sounds like it's pretty much a done deal other than the hoops we're required to jump through to get insurance company approval.
The endocrinologist knew of one additional test the insurance company would require at this point, a growth hormone stimulation test, which I just scheduled for November 10th (the earliest available!). The test will be similar to the cortisol stim tests she's had before - they'll inject a medication to stimulate growth hormone production and then draw blood at several intervals to measure her body's response. The tests can range from 1.5 to 5.5 hours, depending on the stimulating agent they use, and the scheduler wasn't sure which one applies for Summer. Let's hope 1.5 hours...
After that test, assuming the results still indicate we should move forward, we'll hopefully get approval from the insurance company and Summer will start growth hormone about a month and a half later. The growth hormone will help her body grow properly, but it also has other benefits. Most people report that it helps with energy levels (like Summer really needs any help in that area...), and it's also expected to increase her strength and help with progress in motor development. It's certainly worth it, but we're definitely not looking forward to the daily injection it will require!
The endocrinologist knew of one additional test the insurance company would require at this point, a growth hormone stimulation test, which I just scheduled for November 10th (the earliest available!). The test will be similar to the cortisol stim tests she's had before - they'll inject a medication to stimulate growth hormone production and then draw blood at several intervals to measure her body's response. The tests can range from 1.5 to 5.5 hours, depending on the stimulating agent they use, and the scheduler wasn't sure which one applies for Summer. Let's hope 1.5 hours...
After that test, assuming the results still indicate we should move forward, we'll hopefully get approval from the insurance company and Summer will start growth hormone about a month and a half later. The growth hormone will help her body grow properly, but it also has other benefits. Most people report that it helps with energy levels (like Summer really needs any help in that area...), and it's also expected to increase her strength and help with progress in motor development. It's certainly worth it, but we're definitely not looking forward to the daily injection it will require!
Tuesday, September 13, 2011
New blog layout...
Today was Summer's first day of preschool! When I gave her teacher the blog address the other day, it got me thinking that after almost a year and a half there's a lot of information on this blog. It's been my way of keeping track of all of the details and sharing them with anyone who is interested. But, it's not exactly easy to get up to speed.
I've added a new tab to the page called "Get caught up," which gives the short version of what we've been through so far for anyone who is new to Summer's story. I'll try to keep it updated as I update the main blog.
I've added a new tab to the page called "Get caught up," which gives the short version of what we've been through so far for anyone who is new to Summer's story. I'll try to keep it updated as I update the main blog.
Thursday, September 8, 2011
3 month MRI update
Well, we made it - after an entire three months without an MR, Summer had a scan yesterday morning. It went without a hitch, and the results were good. There was no change from her last scan in June.
They also did some blood work today, some of which we were able to review with the Endocrinologist yesterday afternoon. Lately, Summer's been sleeping horribly (much worse than her newborn brother, Archer) - taking an hour to an hour-and-a-half to fall asleep at night, and waking up three times on average each night - so I had been a little concerned about her thyroid levels being off. They were on the high end of normal, but still within the normal range. The Endocrinologist suggested a slight modification to her medication to see if that will help, but if we don't see a change over the next couple of weeks, we can assume it's probably something else.
Everything else came back normal so far, although we're still waiting on the growth hormone results which is the one we expect to see a problem with. Her height, although she is growing, has decreased relative to other kids her age and she is now in the 10th percentile. We expect a call from the Endocrinologist in the next few days to go over the results and figure out next steps.
From prior conversations, we know that there will at least be an X-ray of Summer's hand to determine expected bone growth, but there may be other tests too depending on what the insurance requires. We've been told that growth hormone is often a hard sell for the insurance companies and we might have to bend over backward to prove she needs it. Our insurance company has been very accommodating so far, and I'm hoping that trend continues.
Overall Summer is doing really well. She is very happy to have a brother (and a mom that can more easily crawl around on the floor with her again). We haven't seen even the slightest trace of jealousy from her, which has been a pleasant surprise. The first thing she asks for every morning is to "look at baby Arch," and we often spend the first 30 minutes of the day all cuddled in bed together.
Right now we're preparing for her 3rd (!) birthday on Saturday. Next week, things will be getting busy as she starts preschool two days a week, and ballet starts up again next Saturday. I'll try my best to get another post in next week when we know more on the growth hormone front.
Also, don't forget - the Seattle Run of Hope is coming up fast! The date is Sunday, September 25th, and we'd love to see you all there! If you can't join us for the walk, please help out Team Summer by making a donation here. We were in second place for a while, but have been bumped down to fourth. Help us make it back up! We can't think of a better cause, AND first prize is a trip to Boston, which would take care of our trip for follow-up next summer.
They also did some blood work today, some of which we were able to review with the Endocrinologist yesterday afternoon. Lately, Summer's been sleeping horribly (much worse than her newborn brother, Archer) - taking an hour to an hour-and-a-half to fall asleep at night, and waking up three times on average each night - so I had been a little concerned about her thyroid levels being off. They were on the high end of normal, but still within the normal range. The Endocrinologist suggested a slight modification to her medication to see if that will help, but if we don't see a change over the next couple of weeks, we can assume it's probably something else.
Everything else came back normal so far, although we're still waiting on the growth hormone results which is the one we expect to see a problem with. Her height, although she is growing, has decreased relative to other kids her age and she is now in the 10th percentile. We expect a call from the Endocrinologist in the next few days to go over the results and figure out next steps.
From prior conversations, we know that there will at least be an X-ray of Summer's hand to determine expected bone growth, but there may be other tests too depending on what the insurance requires. We've been told that growth hormone is often a hard sell for the insurance companies and we might have to bend over backward to prove she needs it. Our insurance company has been very accommodating so far, and I'm hoping that trend continues.
Overall Summer is doing really well. She is very happy to have a brother (and a mom that can more easily crawl around on the floor with her again). We haven't seen even the slightest trace of jealousy from her, which has been a pleasant surprise. The first thing she asks for every morning is to "look at baby Arch," and we often spend the first 30 minutes of the day all cuddled in bed together.
Right now we're preparing for her 3rd (!) birthday on Saturday. Next week, things will be getting busy as she starts preschool two days a week, and ballet starts up again next Saturday. I'll try my best to get another post in next week when we know more on the growth hormone front.
Also, don't forget - the Seattle Run of Hope is coming up fast! The date is Sunday, September 25th, and we'd love to see you all there! If you can't join us for the walk, please help out Team Summer by making a donation here. We were in second place for a while, but have been bumped down to fourth. Help us make it back up! We can't think of a better cause, AND first prize is a trip to Boston, which would take care of our trip for follow-up next summer.
Friday, July 29, 2011
Quick update - next MRI scheduled
Just wanted to give a quick update. Summer has been doing really well! We haven't noticed anything suspicious, and I've managed to make it a whole two months without pushing for a new MRI. I'm pretty proud of myself for that!
It certainly helps that we've been very busy, eagerly anticipating the arrival of Summer's little brother Archer who should be making an appearance any day now. Summer has been going to ballet once a week, and is getting ready to start pre-school in the fall.
She'll have an eye exam in a couple of weeks to see if we can catch her on a more cooperative day for a visual acuity test, but other than that we've got nothing on the books until her next MRI which was just scheduled for Wednesday September 7th.
It certainly helps that we've been very busy, eagerly anticipating the arrival of Summer's little brother Archer who should be making an appearance any day now. Summer has been going to ballet once a week, and is getting ready to start pre-school in the fall.
She'll have an eye exam in a couple of weeks to see if we can catch her on a more cooperative day for a visual acuity test, but other than that we've got nothing on the books until her next MRI which was just scheduled for Wednesday September 7th.
Thursday, June 23, 2011
Ophthalmology and Endocrinology updates
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.
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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