That's what the Ophthalmologist told us when we went in for Summer's check up on Wednesday. There will still be holes in her vision, specifically in her peripheral, and we suspect red/green color blindness...but considering that Summer was virtually blind when we discovered this tumor, we'll take it!
The ophthalmology appointment was surprisingly uneventful. Jason and I, on the way in, were talking about how these are our least favorite appointments because something about them just really sets Summer off. She does really well with all the other doctor's appointments, but for ophthalmology she's usually quite uncooperative, and fights every step of the way.
This time around, she did great! They even managed to get a really clear picture of her optic nerve using an HRT, something we've tried to do unsuccessfully two other times. This website about the HRT says: "One problem is that, even though the test only takes a couple seconds to perform, any patient movement (including moving the eye, blinking, or moving the head) will disrupt the laser's path, impairing the quality of the image." As you can imagine, it's really tough to get a three-year-old to hold her eye completely still for any period of time, but Summer managed!
We also saw Endocrinology on Thursday to talk some more about Growth Hormone now that her stim test shows her levels are definitely low. That test itself, which we did a few weeks ago, was not fun - we spent about 4 hours in the infusion center; it took two attempts to get the IV in, and the drug they use gave Summer nausea and vomiting. But it was a necessary evil, according to the insurance companies.
We went over the benefits and risks of growth hormone therapy again, and agreed to move forward. Without it, Summer will still likely grow, but growth hormone will help her grow the right way - with the appropriate bone density and body composition.
On Thursday, they did an x-ray of Summer's hand to measure her 'bone age,' which they'll use to help determine her dose. It's my understanding that they'll take these x-rays periodically throughout her treatment as well as a way to monitor her growth and the effectiveness of the treatment.
From here, we decide which hormone delivery system we want to use - there are TONS of options, and of course the brochure for each one of course makes it out to be the best and easiest system out there - and then we'll get final insurance approval. Depending on how long that takes, we're looking at starting the injections near the end of this year or early in January.
Once the final insurance approval comes in, they'll bring us in to the clinic and show us how to administer the injections, which will be given once a day at bedtime.
On Thursday of this week, we'll have Summer's 3-month MRI so I'll post again soon!
Sunday, December 4, 2011
Tuesday, November 29, 2011
Thankful
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.
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, 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.
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.
Friday, April 29, 2011
One year later...
Today is the one year anniversary of Summer’s diagnosis. As my friend Casie said, anniversary is too happy of a word to mark such an event, but I can’t think of anything else to call it.
So much has happened in the last year. Most of the time it seems much longer than that, like we’ve been dealing with this forever. It’s so normal for us now, that I can’t really remember what it was like to not know this brain tumor was a part of our lives. To worry about “little” things like ear infections and colds instead of cyst re-accumulation, tumor growth, hormone deficiency and shunt failure.
I commented to someone the other day that this next baby probably won’t get nearly as much sympathy from us for the minor things. Like shots? I used to get so stressed out about Summer’s vaccinations when she was a baby. Now? Pfft. Big deal.
Over the past few days, I’ve been reading back through my earliest posts on this blog. It’s amazing how much you can forget in just a year. I’m glad I wrote it all down as it was happening.
Here’s the roll call of what we’ve been through in one year:
- 5 surgeries total - two craniotomies, one reservoir to VP shunt conversion, port-a-cath placement and port-a-cath removal
- Intracystic Interferon therapy – the chemical therapy injected directly into the cyst
- 28 days of proton radiation
- Countless appointments, blood tests, MRIs, CT scans, VEP and vision tests
It’s a lot! Thankfully, Summer has come through it all with flying colors.
We have yet to make it six weeks without a doctor’s appointment, and this six week stretch I was getting optimistic about has turned out to be no exception. I forgot she had a dentist appointment yesterday, and we have an appointment at Children’s on Wednesday for a study we’re participating in.
The study is to try out a new comprehensive care plan, with the goal of better co-ordination and communication between primary care physicians and the specialists at Children’s for patients with “complex medical needs.” When I first got the invitation to participate, I actually chuckled a little bit – it’s strange to think of Summer as someone with “complex medical needs.”
Of course she’s been through a lot, but on a day to day basis, she’s just a normal kid. We’ve been very lucky in that way. She’s retained every bit of her personality - the smarts, humor, stubbornness and sass we always knew she had.
What the nurse told us after Summer woke up from her very first surgery is absolutely still true: "this girl does what she wants!" Just ask her ballet teacher. She constantly interrupts class, wagging her finger at the teacher and saying things like “Hold on. I just need to make a phone call.” Or “Wait, I’m going to go eat dinner.”
So what do you do when a year goes by and your kid is doing as well as Summer? You celebrate! I haven’t had the time or energy to plan very well this year (they SAY you’re supposed to have tons of energy in your second trimester, but chasing after Miss Energizer Bunny drains every ounce it). Maybe next year we’ll have a party.
For tonight, I think the three of us will have to go get ice cream cones at the drive in or a mini cake with lots of frosting from the bakery. Maybe both!
Monday, April 18, 2011
Great MRI today
Summer had a HASTE MRI this morning. Jason went in with her for the scan, and she didn't enjoy being strapped down to the table but calmed down as soon as the machine started going. The scans at Childrens are SO much faster than the ones in Boston - 10 seconds, vs 5-7 minutes - so it's much easier to get through.
We saw the neurosurgery nurse practitioner immediately afterward to have her shunt magnetically reprogrammed, and she told us the scan looked great.
After picking up the obligatory lollipop at the gift shop, we met with the oncology Nurse Practitioner, Cory, to review the images in detail. The cyst looks nice and small, and her ventricles are now a normal size for her age; they were compressed previously because the cyst was pushing everything around in her head.
I always feel a little awkward asking for scans before they're "due," but Cory was very reassuring. She gets that we've been through one heck of a year and that we're going to be a bit overly cautious until we've had a few of these good ones under our belts. It was such a relief to have a peek at what's going on in there!
Summer will have a full MRI on June 2nd (6 weeks out) to check in again. Assuming no complications before then, that means we have a six week vacation from doctor's visits! That might very well be the longest break we've had in a year.
We saw the neurosurgery nurse practitioner immediately afterward to have her shunt magnetically reprogrammed, and she told us the scan looked great.
After picking up the obligatory lollipop at the gift shop, we met with the oncology Nurse Practitioner, Cory, to review the images in detail. The cyst looks nice and small, and her ventricles are now a normal size for her age; they were compressed previously because the cyst was pushing everything around in her head.
I always feel a little awkward asking for scans before they're "due," but Cory was very reassuring. She gets that we've been through one heck of a year and that we're going to be a bit overly cautious until we've had a few of these good ones under our belts. It was such a relief to have a peek at what's going on in there!
Summer will have a full MRI on June 2nd (6 weeks out) to check in again. Assuming no complications before then, that means we have a six week vacation from doctor's visits! That might very well be the longest break we've had in a year.
Friday, April 15, 2011
MRI on Monday
I just realized it's been a month since I posted last, so I thought I'd share a quick update.
Summer has been doing mostly well over the last month. She was sick for about a week, which prompted us to start a stress dose (3x what you would normally need) of hydrocortisone to help her body cope with the illness. It was as a precautionary measure the endocrinologist recommended because her cortisol levels hadn't been tested in a while. If her body wasn't naturally producing the cortisol it needed, this type of flu-like illness could have been very dangerous for her. Luckily, her levels ended up being just fine on their own, and we were able to wean her off the medication last week.
A few days before she got sick, Summer started sleeping poorly, was especially irritable, and not interested in food at all. At the time, we didn't know she was getting sick, so this concerned us a bit. We also hadn't heard back from Dr MacDonald about Summer's last scan (from March 4th), and how it compared to the most recent scans done in Boston (our doctors here at Childrens only had one from early January to compare to, so we were interested to see if it had changed since the mid-February scans from Massachusetts General).
It turned out that the records never made their way to her, so I requested them from Childrens again. We had gone back and forth with Dr Geyer about the time frame for the next scan and were originally going to wait three months unless Dr MacDonald wanted one sooner. Since Dr MacDonald hadn't yet received Summer's most recent scan and we were getting a little worried about the irritability, I decided it was time to push for scheduling her next MRI. I sent an email to our team at Childrens outlining our concerns, and we now have a HASTE MRI on Monday morning (4/18) to check the cyst size.
Since Summer has recovered from being sick and is back off the hydrocortisone, her behavior has mostly returned to normal. We also heard from Dr MacDonald that the overall cyst size was stable, with some minor increases and decreases in various pockets of the cyst. I'm no longer terribly concerned about what the scan will show, but we're keeping the appointment for the peace of mind.
I'll post on Monday to let you all know what we find out.
Summer has been doing mostly well over the last month. She was sick for about a week, which prompted us to start a stress dose (3x what you would normally need) of hydrocortisone to help her body cope with the illness. It was as a precautionary measure the endocrinologist recommended because her cortisol levels hadn't been tested in a while. If her body wasn't naturally producing the cortisol it needed, this type of flu-like illness could have been very dangerous for her. Luckily, her levels ended up being just fine on their own, and we were able to wean her off the medication last week.
A few days before she got sick, Summer started sleeping poorly, was especially irritable, and not interested in food at all. At the time, we didn't know she was getting sick, so this concerned us a bit. We also hadn't heard back from Dr MacDonald about Summer's last scan (from March 4th), and how it compared to the most recent scans done in Boston (our doctors here at Childrens only had one from early January to compare to, so we were interested to see if it had changed since the mid-February scans from Massachusetts General).
It turned out that the records never made their way to her, so I requested them from Childrens again. We had gone back and forth with Dr Geyer about the time frame for the next scan and were originally going to wait three months unless Dr MacDonald wanted one sooner. Since Dr MacDonald hadn't yet received Summer's most recent scan and we were getting a little worried about the irritability, I decided it was time to push for scheduling her next MRI. I sent an email to our team at Childrens outlining our concerns, and we now have a HASTE MRI on Monday morning (4/18) to check the cyst size.
Since Summer has recovered from being sick and is back off the hydrocortisone, her behavior has mostly returned to normal. We also heard from Dr MacDonald that the overall cyst size was stable, with some minor increases and decreases in various pockets of the cyst. I'm no longer terribly concerned about what the scan will show, but we're keeping the appointment for the peace of mind.
I'll post on Monday to let you all know what we find out.
Wednesday, March 16, 2011
Catching up
Today Summer had her port-a-cath removed. As a refresher, that's the access port they placed in January for the daily administration of anesthesia while we were in Boston. Since they no longer need it, it was time to have it removed. Jason and I were glad to see it go - it was pretty disconcerting to feel this big lump under her skin every time we picked her up.
The surgery went well and was very quick. It was only about 35 minutes after they took her back before we got the page telling us they were finished and closing up. 30 minutes or so after that, we talked to the surgeon briefly, and we saw Summer about 20 minutes later. She was awake already and NOT happy.
I'm not sure if she was in pain or just having a bad anesthesia wake-up (they can vary widely in reaction), but she was furious. I'm talking all-out screaming, flailing around, temper-tantrum-of-your-nightmares kind of stuff that lasted for a good 30 minutes before she finally calmed down. It was the most intensely angry reaction she's had to anything so far - Jason and I were shocked - but once she calmed down, it was like a switch had been flipped. She was talking normally and politely, asking if she'd get to see the doctor again, like nothing had ever happened.
She hasn't seemed to be in much pain today - the oxycodone is working well for her. She'll be on that for a day or so, but should recover from this pretty quickly and should only have pain at the incision site.
After two weeks, I think we've fully adjusted to being home. We miss our Boston friends, but are glad to be back! We've had a great time catching up with family and friends, and getting back into our normal routine. Summer's been in a "mommy needs to do it, not daddy" mode for the past few days, and I'm guessing that's part of adjusting to me being at work during the day instead of home with her. Otherwise, she's been coping with all the changes amazingly well.
Summer has had one MRI since being back. It showed the cyst being smaller than the last scan Children's had on file, but that scan was outdated so it's hard to say what the real results are. We're waiting to hear from Dr MacDonald in Boston once she is able to review a copy since she has Summer's most recent scan. Assuming there's no change in cyst, it will probably be another 2 1/2 months before her next one.
She's still not exhibiting many side effects from radiation, which we are grateful for. I've heard reports from some of the other parents of major headaches and continued fatigue, but Summer doesn't seem to be experiencing any of that.
She has had some hair loss, which is mostly noticeable on her right temple where her hair is short from her December surgery. I pointed it out to Jason one day, and apparently it really freaked her out - she's been having meltdowns about it from time to time ever since. Jason and I have had to reassure her numerous times that it will grow back. Poor kid - we'll have to watch what we say around her about the medical stuff while she's in this sensitive stage.
One of the questions Jason and I get asked most is: So, did it work?
The answer is: We don't know, and we won't for some time - maybe years. The tumor is not expected to shrink in size at all, so we won't have any indication of the cells dying off. We'd know sooner if it didn't work because they'd see growth in the tumor mass, but Summer's tumor (the mass part) is so slow-growing that it might take a year to tell if there really has been growth or not.
Unfortunately, we won't ever really be certain that the radiation worked on the cyst. We'll know if it didn't work only if her shunt also fails and stops draining the cyst, which would result in it filling up again. But if there's no change in the cyst, it means that either the radiation worked or the shunt is still working.
I think that's about all I have to update you all on now, but I'll post again when we hear back from Boston - hopefully in the next couple of days.
The surgery went well and was very quick. It was only about 35 minutes after they took her back before we got the page telling us they were finished and closing up. 30 minutes or so after that, we talked to the surgeon briefly, and we saw Summer about 20 minutes later. She was awake already and NOT happy.
I'm not sure if she was in pain or just having a bad anesthesia wake-up (they can vary widely in reaction), but she was furious. I'm talking all-out screaming, flailing around, temper-tantrum-of-your-nightmares kind of stuff that lasted for a good 30 minutes before she finally calmed down. It was the most intensely angry reaction she's had to anything so far - Jason and I were shocked - but once she calmed down, it was like a switch had been flipped. She was talking normally and politely, asking if she'd get to see the doctor again, like nothing had ever happened.
She hasn't seemed to be in much pain today - the oxycodone is working well for her. She'll be on that for a day or so, but should recover from this pretty quickly and should only have pain at the incision site.
After two weeks, I think we've fully adjusted to being home. We miss our Boston friends, but are glad to be back! We've had a great time catching up with family and friends, and getting back into our normal routine. Summer's been in a "mommy needs to do it, not daddy" mode for the past few days, and I'm guessing that's part of adjusting to me being at work during the day instead of home with her. Otherwise, she's been coping with all the changes amazingly well.
Summer has had one MRI since being back. It showed the cyst being smaller than the last scan Children's had on file, but that scan was outdated so it's hard to say what the real results are. We're waiting to hear from Dr MacDonald in Boston once she is able to review a copy since she has Summer's most recent scan. Assuming there's no change in cyst, it will probably be another 2 1/2 months before her next one.
She's still not exhibiting many side effects from radiation, which we are grateful for. I've heard reports from some of the other parents of major headaches and continued fatigue, but Summer doesn't seem to be experiencing any of that.
She has had some hair loss, which is mostly noticeable on her right temple where her hair is short from her December surgery. I pointed it out to Jason one day, and apparently it really freaked her out - she's been having meltdowns about it from time to time ever since. Jason and I have had to reassure her numerous times that it will grow back. Poor kid - we'll have to watch what we say around her about the medical stuff while she's in this sensitive stage.
One of the questions Jason and I get asked most is: So, did it work?
The answer is: We don't know, and we won't for some time - maybe years. The tumor is not expected to shrink in size at all, so we won't have any indication of the cells dying off. We'd know sooner if it didn't work because they'd see growth in the tumor mass, but Summer's tumor (the mass part) is so slow-growing that it might take a year to tell if there really has been growth or not.
Unfortunately, we won't ever really be certain that the radiation worked on the cyst. We'll know if it didn't work only if her shunt also fails and stops draining the cyst, which would result in it filling up again. But if there's no change in the cyst, it means that either the radiation worked or the shunt is still working.
I think that's about all I have to update you all on now, but I'll post again when we hear back from Boston - hopefully in the next couple of days.
Friday, February 25, 2011
The big day!
Last night, we picked Jason up from the airport. He flew back out to Boston (thanks Uncle Jimmy!) to be here for Summer's last treatment and help us get back home.
Here's Summer patiently waiting for him at baggage claim:
She didn't spot him in the crowd of people, but once I pointed him out, she jumped out of the stroller and ran to meet him.
Today, Summer finished her final radiation treatment. Her last session this morning went well, and she was in good spirits for her bell ringing. I managed to keep the tears in check, which is quite a feat since I could barely keep from crying when complete strangers would ring the bell. It's a very simple, but emotional thing.
Below are some photos from the last day, and a video of the bell ringing toward the end of the post.
Summer's last day happened to also be a Toy Friday. This is the toy cabinet she got to choose a toy from each Friday. Nurse Rachel, who usually sets it all up, was on vacation, so it's a little less organized than usual but Summer didn't care one bit. Today she chose a giant coloring book.
When we walked into the prep/recovery room, there was a surprise waiting for Summer. Her bed was decorated with a congratulations banner and gifts:
This lucky girl gets to take home her very own monkey puppet, which was one of her favorite toys to play with each day:
After Summer woke up from treatment, we went out to ring the bell. She was pretty anxious to do it - she's been talking about it a lot since she saw Casey ring the bell on Wednesday.
We'll head back over to the proton center on Monday to say goodbye to Nurse Rachel, but Summer couldn't leave today without saying goodbye to Dr Nick, her favorite anesthesiologist:
Here's Summer patiently waiting for him at baggage claim:
She didn't spot him in the crowd of people, but once I pointed him out, she jumped out of the stroller and ran to meet him.
Today, Summer finished her final radiation treatment. Her last session this morning went well, and she was in good spirits for her bell ringing. I managed to keep the tears in check, which is quite a feat since I could barely keep from crying when complete strangers would ring the bell. It's a very simple, but emotional thing.
Below are some photos from the last day, and a video of the bell ringing toward the end of the post.
Summer's last day happened to also be a Toy Friday. This is the toy cabinet she got to choose a toy from each Friday. Nurse Rachel, who usually sets it all up, was on vacation, so it's a little less organized than usual but Summer didn't care one bit. Today she chose a giant coloring book.
When we walked into the prep/recovery room, there was a surprise waiting for Summer. Her bed was decorated with a congratulations banner and gifts:
This lucky girl gets to take home her very own monkey puppet, which was one of her favorite toys to play with each day:
After Summer woke up from treatment, we went out to ring the bell. She was pretty anxious to do it - she's been talking about it a lot since she saw Casey ring the bell on Wednesday.
We'll head back over to the proton center on Monday to say goodbye to Nurse Rachel, but Summer couldn't leave today without saying goodbye to Dr Nick, her favorite anesthesiologist:
I don't think it's really hit that she's done, but maybe by the time we get home on Tuesday night. We'll see.
Thursday, February 24, 2011
A tour of Gantry 1
At the Proton center here, there are two machines running each day. Every one of Summer's treatments has been in Gantry 1, and today I stuck around a little longer than usual after they put her under to take pictures and watch the process.
FAIR WARNING: some of these pictures may be difficult to look at. They're not gory or graphic by any means, but there are pictures of Summer under anesthesia and wearing her mask, strapped onto the table. Despite everything she's been through in this room, she is never afraid to enter, so that tells you she has no idea that any of this is happening.
This first photo was taken on a different day, but nurse Rachel is on vacation now so we had to get one in early. Each treatment begins with Rachel walking Summer and I down to the gantry.
Summer's favorite part of treatment is visiting with the dancing turtle, who dances to Funky Town:
This is the gantry team - the people who run the actual treatment:
This is Summer's form-fitting mask. It helps to position her head exactly the same way every day. Unfortunately we can't bring it home with us because it absorbs some of the radiation. It would be interesting to keep and look back at to see how tiny Summer was at this point:
In these next photos, Summer has just been put under anesthesia. She's sitting on the table and they're fitting the mask on. Click on the photo to open a larger version.
Once they have the mask on and Summer all wrapped up and strapped to the table, they move the table out into position so it's hanging out inside the machine. Here, the control reads "Target position reached":
This is the part of the machine the actual radiation beam comes out of. The plastic piece on here is designed and contoured specifically to treat Summer's tumor. The divots controls how far the rays will go before stopping.
She has three sets - one for each of the treatment fields. Here's the next one that will replace the one shown above when they move on to the second field:
These are the monitors in the radiation room - you can see images of Summer's head on the two monitors on the far left.
But, nobody is in the room while the actual treatment is happening. They all move out to this control room where they can monitor Summer's vitals and see everything that's going on in the gantry.
Here's a close-up of the monitor that shows Summer, all wrapped up and ready to go:
Normally, I leave the gantry as soon as Summer goes under and I lay her on the table. It was very interesting to see the whole prep process. I wish I had asked to stay and watch sooner! It's hard to believe tomorrow will be her last day.
Wednesday, February 23, 2011
A visit with the Hamiltons
My Aunt Sue, Uncle Mark, and cousins Alexis and Lauren came to visit Summer and I last week. They arrived on Thursday evening and stayed through Sunday evening. I hadn't walked or eaten as much in our entire time here as we did over those few days; we had a great time!
On Friday my second cousin, Father Dan Moloney, came by for a visit. Summer took to him very quickly and had him playing hide and seek in the apartment until the Hamiltons joined us and we headed out to a nearby Italian deli for lunch.
Friday was one of the warmer days we've had in Boston since we've been here, and we took full advantage of it with a long walk.
After Dan went back to the seminary, we started up Charles Street, which is a fun street to walk. It's full of cute shops and row houses.
Here are Summer and Alexis in one of the shops:
At Boston Common, we played a bit in the "Frog Pond." It was still quite icy and slick on the ground, but that didn't stop Summer from having fun!
From Boston Common, we headed over to Quincy Market and Faneuil Hall:
There, we came across the balloon man:
He spoiled Summer a little:
Saturday was my birthday, and I had a fabulous day. We ate a delicious lunch at PF Changs, had pedicures at the mall (in amazing massage chairs) while my aunt and uncle watched Summer, then hung out at the apartment for the evening.
Summer took a long nap and let us grown-ups watch an entire movie without interruption. Then we ordered in some Indian food for dinner and baked a birthday cake, thanks to the birthday in a box my mom sent. Good thing Alexis paid attention to the balloon man, because she showed us how to make our own balloon shapes with the balloons that came in the box.
Summer loved trying on all the hats at one of the mall kiosks:
On Friday my second cousin, Father Dan Moloney, came by for a visit. Summer took to him very quickly and had him playing hide and seek in the apartment until the Hamiltons joined us and we headed out to a nearby Italian deli for lunch.
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| Photo credit: the Hamiltons |
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| Photo credit: the Hamiltons |
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| Photo credit: the Hamiltons |
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| Photo credit: the Hamiltons (Left to Right: Fr Dan Moloney, Summer, Uncle Mark, Alexis, me, Aunt Sue, Lauren) |
After Dan went back to the seminary, we started up Charles Street, which is a fun street to walk. It's full of cute shops and row houses.
Here are Summer and Alexis in one of the shops:
At Boston Common, we played a bit in the "Frog Pond." It was still quite icy and slick on the ground, but that didn't stop Summer from having fun!
From Boston Common, we headed over to Quincy Market and Faneuil Hall:
There, we came across the balloon man:
Saturday was my birthday, and I had a fabulous day. We ate a delicious lunch at PF Changs, had pedicures at the mall (in amazing massage chairs) while my aunt and uncle watched Summer, then hung out at the apartment for the evening.
Summer took a long nap and let us grown-ups watch an entire movie without interruption. Then we ordered in some Indian food for dinner and baked a birthday cake, thanks to the birthday in a box my mom sent. Good thing Alexis paid attention to the balloon man, because she showed us how to make our own balloon shapes with the balloons that came in the box.
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| (Photo credit: the Hamiltons) |
On Sunday, we had a delicious brunch at Cheesecake Factory and wandered through a mall I hadn't been to yet on our way back to the subway.
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| (Photo credit: the Hamiltons) |
Summer loved trying on all the hats at one of the mall kiosks:
From there, we took a little stroll through the Harvard campus, but we didn't stay out for very long because it was so cold that day. Summer had it pretty good though:
Shortly after we got back to the apartment from Harvard, it was time to say goodbye as the Hamiltons headed to the airport and back home. We definitely had a lot of fun and made the most of their time out here!
On Sunday evening, we got together with a couple of Christopher's Haven families for dinner. The kids provided great entertainment to accompany the yummy Omaha Steak dinner. I am really going to miss this group when we're all gone home!
The kids: Casey, Summer and Spencer
And the moms:
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| (left to right: Denise, Diane, me) |
I know I've said this before, but we really will be a little sad to leave our new friends behind. Casey finished treatment this morning and will be heading home tomorrow. It's hard to believe we'll be the next ones to go!
Congratulations Casey! We will miss you guys.
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