Summer Claire

There is nothing benign about it

2012-02-29T07:35:00.006-08:00

Before the title gets anyone worried about Summer, let me start out by saying she's great. Nothing new to report, other than a drastic improvement in how she's handling her daily hormone injections. Her next set of appointments are on 3/15 and 3/21, so I'll have more info to share then.

Remember this post?

The one where I ranted a little about surgeons who go straight for the whole tumor? Well, here's why I get so angry:

Yesterday, I found out a little girl died from complications of this tumor and the conditions caused when you do too much damage to that area. She was seven years old. What's worse? She is the fourth kid from my craniopharyngioma community to die in the last three months. Four kids. My heart breaks for them and their families.

I will continue warning people when I can. And I will try to be more forceful with my warnings. I know it's hard to live with this tumor in your kid's head. Boy do I know. But what's harder is living with (or dying from) the complications of being too aggressive when research shows you may not need to be.

What else can I do? We'll continue to raise money for research to help come up with even better solutions. This year, the Run of Hope is on September 30th. I hope you will join us!

Happy New Year!

2012-01-01T12:29:00.000-08:00

One year ago today, we were on a plane for our first trip to Boston - the planning trip to get everything set up for radiation. It's hard to believe that was a year ago already!

Here's hoping we leave cancer treatments and surgeries back in 2011 and can move forward in 2012!

Since I've been a slacker the last few weeks, here's a quick December wrap-up:

Summer's MRI on 12/8 was stable! We'll continue with scans every 3 months until March of 2013, two years from the end of radiation.

Growth hormone therapy was approved, and we started injections the week before Christmas. It still takes two of us to get it done most nights. I have been able to give her the shot on my own a couple of times, but it takes all of my limbs to keep her still. I know it will get easier with time, but for now it's pretty awful.

Since starting growth hormone, Summer sleeps longer at night and doesn't seem to have much of an appetite (unless it's sugar you're offering). I noticed this morning that she already seems leaner. I'm not sure whether it's because she's growing taller or just eating less. We'll have another followup with the endocrinologist in March and I'm sure they'll check all her levels again at that time.

Other than that there's not much to report, thankfully! We hope you all had happy holidays and we wish you a great new year!

"No reason to think she won't see 20/20!"

2011-12-04T19:32:00.000-08:00

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!

Thankful

2011-11-29T17:04:00.000-08:00

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.

2011 Run of Hope

2011-09-27T12:35:00.000-07:00

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:

Growth hormone update

2011-09-22T10:11:00.000-07:00

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!

New blog layout...

2011-09-13T23:36:00.000-07:00

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.

3 month MRI update

2011-09-08T17:15:00.000-07:00

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.

Quick update - next MRI scheduled

2011-07-29T10:18:00.000-07:00

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.

Ophthalmology and Endocrinology updates

2011-06-23T15:46:00.000-07:00

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.

Results from Thursday's MRI

2011-06-04T20:54:00.000-07:00

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.

One year later...

2011-04-29T13:57:00.000-07:00

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!

Great MRI today

2011-04-18T13:59:00.000-07:00

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.

MRI on Monday

2011-04-15T16:17:00.000-07:00

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.

Catching up

2011-03-16T19:53:00.000-07:00

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 big day!

2011-02-25T18:11:00.000-08:00

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:

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.

A tour of Gantry 1

2011-02-24T09:41:00.000-08:00

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.

A visit with the Hamiltons

2011-02-23T19:58:00.000-08:00

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.

Photo credit: the Hamiltons


Photo credit: the Hamiltons (Left to Right: Fr Dan Moloney, Summer, Uncle Mark, Alexis, me, Aunt Sue, Lauren)

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.

(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.

(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:

(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.

MRI results

2011-02-16T19:01:00.000-08:00

We only received a brief message about the MRI, since Dr MacDonald was booked with clinic appointments and unable to meet with us this morning at the proton center, but the cyst is "stable, if not smaller."

In my mind, that could mean a couple of things. It could be that the cyst expansion we saw before inflated it enough that the catheter is now able to continuously drain it, or the radiation is already working. Either way, it's good news. We just don't want to see it get any bigger.

I think this means Summer won't have to have another MRI here in Boston, but we'll see what Dr MacDonald says when we see her next.

Daddy!

2011-02-15T12:52:00.000-08:00

We were so excited to have Jason come for a visit! Summer tried her hardest to wait up for his arrival, but couldn't hold out past 12:05am. He got to our room around 12:30am Thursday, so she didn't miss him by much!

In the morning, I headed out solo (for the first time in a LONG time) over to the proton center to watch one of the Christopher's Haven families celebrate their final treatment and say goodbye since they were driving home straight from the final treatment. I missed Summer waking up to see Jason for the first time, but they were cuddled up in bed when I got back.

She was very happy to see him and show off all her new toys, and the wait for her Thursday morning appointment (they're always a little later because the anesthesia doctors do their rounds and aren't available until 10 or so) was easier than ever despite the machine running late. Jason went with us into the treatment room and finally got to meet the dancing turtle. I've heard we're allowed to take pictures in the treatment room, so I need to bring my camera over there one of these days and you all can see what it looks like in there.

We had a relaxing and fun few days with Jason, and it all went by way too fast! We had to take him over to the Museum of Science to see the dinosaurs and, of course, the rocks.

(Sneaking a rare bite of actual food. Actual food = anything other than Doritos)

Jason also got to help open a few care packages:

Relaxing with Daddy:

On Jason's last night here, we took a trip over to Faneuil Hall. They have the mother of all food courts - the selection was amazing. We had fun just wandering around, looking at all the shops.

(The only picture of the three of us from this trip, and Summer's not looking, Jason's blurry, oh well!)

Jason flew home on Sunday evening. It was hard to see him go! Summer slept through the train ride to the airport and the goodbyes. We tried to wake her up, but she was out cold. It made it a little easier on me not to see her get upset by him walking away, but she was very confused when she woke up and he wasn't there anymore. Even this morning, she woke up while I was in the shower and came running into the bathroom calling "Daddy?" because she thought Jason was here.

Thankfully, he comes back on the 24th, so we won't have to go as long without seeing him this time. Thanks, Uncle Steve, for Jason's plane tickets on this trip, and Uncle Jimmy for the next set!

Since Jason left, it's been back to the daily routine. Summer had an MRI this afternoon, so I'll post again tomorrow to let you all know what it shows. It was another HASTE MRI, without anesthesia, and she did great. I had asked for an anesthesia MRI this time since it is pretty stressful for her when they do these longer scans (5-7 minutes), but since she has a cold they don't want to put her under anesthesia twice in one day. She barely cried at all this time, so I think she's getting pretty used to it.

Hope you all had a wonderful Valentine's Day! We sure did.

And since that was such a cheese-ball smile, here's a nice one from Valentine's Day:

Anxiously awaiting Jason's arrival

2011-02-12T12:24:00.000-08:00

After Grammy and Papa left, we were back to the normal daily routine - treatment, attempting to get naps in, work, etc. We had no appointments other than treatment this week, so there isn't really anything new to report about the medical side of things.

Summer continues to handle the treatments well, and is now completely used to the daily process. The only real side effects we've encountered at this point are frequent low-grade fevers and a loss of appetite. On most days, she'll nibble throughout the day - a couple of bites here and there - but she really hasn't been eating anything of substance. Her main source of nutrients at this point is yogurt smoothies from Whole Foods. She usually drinks two 6oz bottles a day.

The dietitian at the proton center recommended kids' Boost drinks, which are a calorie intensive drink, and gave us some samples. Summer hasn't really been interested in them though, and I don't blame her - they're not very good at all.

I've completely given up on gluten-free in this past week and will allow her to eat WHATEVER she wants just to get something in her tummy. Mostly she wants very sugary or salty things. The nurses were very excited to see her eat some chocolates she was given as a valentine the other morning, and it's a very odd thing to be so happy that my kid is eating a ton of junk food. Normally I'd be cringing, but that's 220 calories right there!

Summer continues to get wonderful care packages and valentines from all over. This week, she received a cute little Madeline doll and book from Jason's grandma's cousin Carol in Arizona. I'm not sure if you're aware, but apparently Madeline changed her name to Madison. Summer insists on it. I've given up arguing, and call her Madison now too.

She also received some fun valentines goodies from all over - thank you to everyone! Summer is loving all the mail, and the kindness of strangers continues to amaze me. I'm going to have to take a picture of her swimming in her pile of valentines sometime next week.

A very talented dog named Bandit made this beautiful banner for Summer. Can't wait to hang it in her bedroom, but for now it's gracing our mirror here at Christopher's Haven. Thanks Bandit (and family)!

We spent the week eagerly awaiting Jason's arrival, and kept ourselves busy hanging out with the Christopher's Haven group. We've said few goodbyes this week, as three families finished treatment and headed home. It's a happy kind of sad.

Peter, Pam and Pete...
Nayider, Kamilah and Christian...
and Baby Ellie

We enjoyed spending the last few weeks with all of you! We'll miss you around here, but we're glad to know you're home and on to the next thing. Best of luck, and keep in touch!

As Kamilah would say,"YAAAAAAAAAY!"

A visit from Grammy and Papa

2011-02-12T10:54:00.000-08:00

Starting from where I last left off, my dad and Melanie came out last weekend for a visit. We had fun hanging out with Grammy and Papa and showing them some of our favorite Boston places. Here are some of the highlights:

Hanging out at the apartment:

A trip to the Museum of Science:

(standing in Boston and Cambridge at the same time)

A walk through the hospital to show my favorite view of Beacon Hill.

Once we hit the subway, Summer was pooped. She pulled her hat down over her eyes and slept all through the subway ride, through the walk to Boston Market and woke up just as we were finishing lunch.

After a long walk through the city, we enjoyed a movie night and ordered dinner in at the apartment. The next morning, we met Grammy and Papa at their hotel for breakfast before heading out to Harvard Square.

Summer was very excited to see a Curious George shop in Harvard Square:

We ate lunch at Uno's, and Summer never even knew we were there. She fell asleep on Papa's shoulder shortly before we got there, slept all through lunch and the entire trip back to the subway.

I realized that I have no pictures of Grammy on this trip! She really was here, I swear! We had a lot of fun while they were here, and successfully wore Summer out each day, which is quite a feat!

Halfway done!

2011-02-06T21:32:00.000-08:00

I need to blog more frequently, I think. It's too easy to forget everything that has happened in a week when it all flies by so quickly! Let's see...since my last blog post:

Summer received a wonderful care package from the Van Avery family (Jason's mom's cousin Nicole, her husband Dylan and kids Madison, Hunter and Brooke). She gets so excited when we receive packages, and had so much fun opening each individually-wrapped present inside.

We've borrowed Cinderella II from Christopher's Haven, and Summer loves to run around with this wand shouting all kinds of modifications on "Bippity Boppity Boo!"

(bracelet with a working whistle charm)

I'm told the kids picked out and wrapped all the gifts themselves - they did a fabulous job! Summer loved all of it.

Summer has also been receiving Valentines from people almost every day, mostly from people we've never met - friends of friends, friends of friends of friends, and other cancer survivors who have heard her story. She LOVES checking the mail and gets so happy when she has a new card waiting. Thank you to all of you!

We spent last weekend at the Aquarium and Children's Museum. I successfully wore Summer out both days and got to take advantage of some good nap time to work and sleep a little myself, of course. By Sunday, Summer had picked up my cold from last week. She started with a stuffy nose and developed a pretty serious cough, which I never had.

I was worried that she wouldn't be able to have radiation because of her cold and the complications it could cause with anesthesia, but they did end up treating her every day last week. The deciding factors were that 1) her lungs sounded clear, despite the phlegmy cough and 2) she wasn't having problems keeping her oxygen saturation levels up while under anesthesia.

We met with a neurosurgeon on Tuesday afternoon, just to go over her scan from the week before and talk about the possibility of readjusting the shunt flow setting. He felt like the increase in cyst size was minor enough that we shouldn't do anything yet. The risk with setting the flow too high is that the cyst walls can get stuck on the holes in the catheter and plug it up. He thought we should continue to monitor it and re-evaluate if we saw further changes. Since Dr MacDonald had already adjusted Summer's radiation plan to accommodate the slight change in size, this was fine by me.

Even the cold and the radiation still haven't slowed Summer down much. We had a lot of fun with the families at Christopher's Haven this week. On Tuesday evening, we heard some kids out in the hallway and went out to join them. My cheeks were sore by the time we came back to our room from laughing so hard. They had such a great time.

On Wednesday evening, there was a going away celebration for one of the families who had final treatment and moved out on Friday. Even with all the toys and games over at the Christopher's Haven loft, somehow the kids always end up playing in the hallway. Summer's favorite thing is going for rides in the dump truck.

I don't have any pictures of it, but she's great about taking her turn down the hallway and back, and then hopping off to let the next kid have a turn.

We have such a great group of families staying here right now. Some of them are finishing up this week, and while we're happy for them of course, we'll be sad to see them go. At the going away party, I got a chance to talk to Casey (21) who is being treated for a tumor in the same area as Summer's, although hers is a different type of tumor and is wrapped around her optic nerves. She has been feeling very sick from the radiation, so I hadn't seen much of her prior to that night although I'd talked a bit with her mom. It was very interesting to hear her explain what it's been like to have vision issues, since Summer has experienced some loss as well but can't tell us anything about it.

Earlier that day, Summer had another MRI. It went well, other than the fact that somebody--for some unknown reason--canceled Summer's appointment. We had talked about the appointment with neurosurgery the day before, and with the radiation team that morning. There was no doubt in my mind that she was supposed to have an MRI that day, but when we showed up at 11:15 they couldn't find Summer in the schedule.

After almost two hours of waiting, during which Summer was uncharacteristically patient, they squeezed her in. The MRI sequences they had ordered took significantly longer than previous scans. The ones she's had at Children's in Seattle take less than 30 seconds, and the one here last week was a few minutes, but they had to run it several times to get clean images. This time she was in the machine for just over 7 minutes, and it is my understanding that they didn't re-run anything. She tolerated it amazingly well. I was very impressed. If they have to do one that long again, though, I think I will request an anesthesia appointment. Even though she handled it well, it's very stressful for her. With tubey in during the week, she wouldn't even have to get a poke to do a scan with anesthesia.

On Thursday morning, one of the radiation doctors (Dr MacDonald was out of town this week) came and updated us on the scan. It showed the cyst was maybe 1mm larger than the week prior. A very minuscule change. We'll talk to Dr MacDonald about it on Monday, but it sounds like they won't need to alter the plan again and will plan to scan again in another week or two.

Thursday afternoon brought another impromptu running/dump-truck-riding session in the hallway with Spencer. Kamilah (2 months younger than Summer) came out to play too, and the girls were fighting over Spencer's attention. They were pushing him in the dump truck together and kept trying to elbow each other out of the way so they could be the only one pushing him. It was pretty funny!

The kids were having so much fun that before I knew it, it was 7pm and we hadn't eaten dinner yet. I started heating up some leftovers, and before they were even done, Summer had passed out on the bed. I ate by myself and let her sleep for a while. She woke up around 8:30 running a fever of 99.8 and extremely upset. I could tell she was uncomfortable and not feeling well, but she couldn't tell me what was wrong. A fever and a cold are enough to make anyone miserable, but I finally figured out the main source of her discomfort was constipation.

I won't give out the details, but after some juice (with a healthy dose of Miralax), cuddling, and a few trips to the bathroom in the middle of the night, she was feeling a bit better. Made for a rough night, but I'm glad her discomfort was so easily solved, and not something more serious.

Friday was Summer's 14th of 28 treatments, which makes her halfway done! When we got back to the room, we had a package waiting for us from my Aunt Becky and Uncle John. Summer has this package thing down now. When we get it back to our room, she goes and sits on the rug and says "you get the scissors, Mom. Let's open it!" So open it we did.

This book about a girl who raises a coyote was a gift for me, but I haven't been able to take it back from Summer yet - she loves looking at the pictures of the "puppy."

Summer absolutely loves this kitty! When she unwrapped it, she was hugging and kissing it so frantically that all of the pictures turned out blurry. Except this one.

Poor kitty accidentally took a swim in the toilet on Saturday though - yuck! He promptly had a very soapy bath and is now dry and clean once again.

The aftermath of care packages :)

On Friday evening, my dad and Melanie arrived for a weekend visit. That will have to be a blog post for another day - it's 12:30am and I need to go to bed!

What a week!

2011-01-29T12:51:00.000-08:00

Summer has now finished nine of 28 proton radiation treatments. Hard to believe we're basically a third of the way done - it's going very fast!

This last week was a little crazy. In addition to her morning radiation schedule, we had a lot of afternoon appointments, which really messes with naptime and makes for a grumpy kid. On top of it, I came down with a cold. Thankfully, Summer has managed to avoid getting it from me.

On Tuesday, Summer had the Boston equivalent of a HASTE MRI (the quick one they do without anesthesia). We made it through okay, but it didn't go as smoothly as the ones she's had over at Seattle Children's. MGH is not a children-only hospital, and the nurse admitted they don't have much experience doing this type of MRI for young children, although they'd like to do them more often to avoid giving anesthesia when it's really not necessary. Hopefully the pointers we gave them will help in the future, but part of it is that they just don't have everything they need to get it done efficiently for little kids. Without the forehead strap and pads to hold her head still, they had to run the MRI sequence 4 or 5 times to get good images for Summer. She has another one next week, so we'll see if that goes any easier.

We met with Dr Jones, a neurologist, on Wednesday afternoon. A neurology appointment comes standard with radiation, mainly to connect us with a doctor here in case we start seeing any problems. Sometimes, the neurologist will want to follow the child with visits throughout the radiation process, but Dr Jones didn't see anything in Summer that she thought made frequent visits necessary.

I was especially excited about this appointment because it was our chance to finally get a verdict on weaning Summer off of Keppra, the seizure medication she's been on preventatively since her August craniotomy. We've been ready to wean her off of it for some time, but kept having issues connecting with the neurologist in Seattle. We had an appointment, and then the Boston schedule got changed and we had to cancel it but couldn't get another one in before we left.

Keppra makes kids irritable and amplifies reactions, so we're anxious to get her off of it. It will take 8 weeks to wean completely because weaning too fast can actually cause seizures, but Summer had her first reduced dose on Thursday.

Dr Jones also asked if I had seen the scans from Tuesday. I hadn't yet, assuming we would hear about them after Wednesday's tumor board meeting, so she pulled them up to take a look. I could tell right away there is a little bubble of cyst that is re-accumulating. This is not abnormal - in fact, it's very common for cysts to get bigger during radiation. What's frustrating is that it's not draining with the shunt.

Dr Jones connected us with the pediatric neurosurgeons here at MGH and we have an appointment with Dr Butler this coming Tuesday afternoon to talk about increasing the flow of the shunt to see if it's just accumulating faster than the shunt is draining. The other possibility though, is that now that the cyst is collapsed, this part that is re-accumulating may not be accessible to the shunt catheter.

While that would be unfortunate, it's not really a problem yet. Dr MacDonald (the radiologist) has adjusted Summer's radiation treatment plan just slightly to accomodate the increase in cyst volume. It's such a small increase that she told us some might argue she didn't need to adjust the plan at all, but she would rather be on the safe side. She also sent copies of the scans over to Dr Browd (Summer's neurosurgeon in Seattle who placed the shunt) to see what he thinks about adjusting the flow of the shunt. We'll have more scans throughout the radiation treatment and can continue to adjust the plan as needed.

On Thursday afternoon, Summer had an endocrinology appointment. They had drawn some blood for labs during Summer's first radiation session, so we reviewed the results. Everything looks good, except her thyroid levels are a little off again. Summer has slight hypothyroidism and has been on medication for that since November, but these labs show that her dose was a little too high. They prescribed new pills at a reduced dose and will check her levels again in four weeks to see if the new dose is right.

Her radiation treatments have been a struggle this week. Summer was having waking up very quickly from the anesthesia, but had a very hard time shaking the effects of it. Most days, she would need about two hours before she was back to normal. In those two hours, she was extremely whiny (to the point where sentences were coming out as one big, completely unintelligible whine), irritable, and just plain grouchy.

By Thursday, I was actually beginning to understand the whiny sentences she'd been saying all week. It's like learning a new language and being put into submersion school two hours a day! Every day when we walk into the radiation room, they have a stuffed turtle that to Funky Town when you squeeze it's foot. I didn't realize Summer loved that turtle so much, but every day after waking up from anesthesia, she asks to go see the dancing turtle again. Of course, we can't - someone else is getting treatment by then - so I tell her he's taking a nap and we can't go wake him up, and she seems okay with that.

On Friday, we could really see how comfortable Summer is becoming with the whole process. She was walking around the prep/recovery room and playing with the nurses, and she walked herself all the way down to the radiation room when it was time for treatment.

That day, I asked them to allow me back to the recovery room well before she wakes up to see if having me there as she's waking up would make any difference in her behavior afterward. Normally, they call me when she's stirring, and by the time I get back there she's already awake and in whiny mode. I'm not sure whether it was me being there that helped, because she also woke up a bit more slowly, but she had a much better time on Friday. She was pleasant and talking in actual words.

Summer continues to be very sensitive about her "tubey," and often tells me "Don't touch my tubey, Mom. It's dangerous." Changing clothes is an even bigger battle than usual during the week when tubey is in. I've been trying to get a picture of it to send to Jason since day one of treatment, but she would never let me. UNTIL she was procrastinating at bedtime one day. Then she asked me to come take a picture of it with my phone. This is tubey:

While the weather (we had lots more snow this week), my cold and general grouchiness from skipping naps have kept us from going out much this week, we've kept busy in our apartment.

We got a couple of wonderful care packages from friends, the Kok and Drake families, which Summer thoroughly enjoyed.

Watercolor paints, a beautiful Summer necklace and stickers from Lauren, Ben, Val and Kevin Kok:

A Care Bear book, coloring book, new jammies and candy from Logan, Claire, Casie and Aaron Drake:

On Wednesday evening, we had a get together with some of the other families at Christopher's Haven so they could get some parent/family input on ideas they have for new things to do this year. It was great to get to talk to some of the other parents I hadn't had the chance to meet. There are a couple of older kids here for radiation, and it was interesting to hear about how they're feeling since Summer can't always tell me. Both of the older kids are pretty exhausted most days, and Summer definitely isn't, but they're a bit farther along in treatment, so some fatigue may be in our future.

On Thursday evening, a charity called Our Space came to the Christopher's Haven loft and put on an arts & crafts night for the kids. We had a blast! Summer made a lot of great art pieces - at least one will definitely be going on the wall when we get home (the purple star wand is my favorite) - and had a great time playing with the other kids close to her age. They ended the night with races back and forth down the hallway. All us grown-ups had sore cheeks from laughing so hard all night!

This was a genius idea - foam board that is sticky on one side, so no glue is necessary. Makes for a much neater art project!

My favorite piece of Summer's:

Making a card for Logan and Claire:

Playing trains with Spencer:

This is Spencer (3 years old):

Summer "hiding" and Spencer finding her during a great game of hide-and-seek:

Summer, Spencer and Kamilah (2 months younger than Summer) racing in the hallway:

The finished products:

I'm feeling much better now, and our snow gear has all arrived (we shipped some separately), so we'll probably go out and play in the snow sometime this weekend. Summer has been very anxious to build a snowman!

It's been a week already

2011-01-23T14:09:00.000-08:00

It's hard to believe we've been in Boston for an entire week already - it has gone by much more quickly than I anticipated.

Summer's third and fourth treatments went well, and she had her "tubey" removed on Friday while she was still under anesthesia. Fridays are toy days at the proton center, and each kid gets to pick a toy from the cabinet (which is actually a cabinet and a couple of tables - they have a lot to choose from!). Summer picked a toy dinosaur this week, and I was worried she'd lose interest in it quickly, but she has played with it every day since.

She's really looking forward to the next toy day. She has told me several times "We'll go to the hospital and pick out a toy. Won't that be fun with the doctors?"

Summer also had a neurophsychology evaluation last week, where they play games with her, observe her doing physical tasks, and evaluate her on a number of levels - motor skills (gross and fine), language (comprehension and speech), social interaction, etc. Summer cooperated pretty well with most of the tests, and did better than I expected for a near-naptime appointment after having been under anesthesia, which always makes her a bit testy.

They'll write up a full report on her based on their observations and some LONG questionnaires I had to fill out (in fact, I still have to finish one up tonight to send over there tomorrow), but the neuropsychologist said that Summer was doing exceptionally well. She went far beyond her age level in the language-related games, and while she wasn't as far along in some of the physical categories, she was doing well there too.

She'll have similar evaluations annually to help us spot any problem areas (caused by her treatments) early on and get her help right away so she won't fall behind her peers.

While we've had all of Summer's appointments to get us out of the apartment every day, we've kept busy in other ways too. This week, our outings included a trip to the Children's Museum, the mall, and the Museum of Science.

I didn't bring the camera to the Children's Museum, since I've posted photos from there before, but here are some highlights from our trip to the Museum of Science today:

The butterfly garden.

A lightening tube.

There's some big long name for what this is, but basically it's a storm cloud simulator they use to generate indoor lightening. Summer and I got to watch a show - it was really cool!

"Rex" outside the museum. Summer loved the entire dinosaur exhibit inside, but I think this one was her favorite.

A giant grasshopper. Summer liked this guy so much, she picked a toy grasshopper out at the museum store for her special treat.

On the coldest days, we've stayed in and played with toys in our room or the common room. We've also watched quite a few movies. Summer's new favorite is The Rugrats Movie ("the baby movie").

After a week, we're getting closer to being on Boston time, but we're still not quite there yet. I was hopeful, when Summer took a good afternoon nap yesterday, that we'd be in bed before 11 last night. We did get in bed around 10pm, but she didn't settle down and fall asleep until sometime after 11. Still better than past nights when we've been up until 1am or later. Baby steps...

Summer's treatments next week, with the exception of Thursday morning, are much earlier. Hopefully this will also help with adjusting to Boston time since we won't be able to sleep in until after 9, and she'll have anesthesia earlier in the day.

Day 2

2011-01-19T15:25:00.000-08:00

Today was Summer's second treatment day and it went a bit better than the first. The access line for her port was still in place and working fine, so they didn't have to poke her at all and just hooked the IV up. Walking back into the radiation room was a little scary for her - especially after having been in so many CT, MRI and operating rooms - but they gave her the propofol and she went right off to sleep.

When they called me back to see her, she was already awake (a much faster wake-up than yesterday) and sitting in her bed calmly. She ate and drank right away, and was ready to climb right off the bed and leave before the nurse said she could go home.

We met a couple of the other kids today, and two of the ones whose treatment overlapped with Summer today are also staying at Christopher's Haven - a two-year-old girl who speaks only Spanish, and a 3 year old boy named Spencer. I've been told there's another two-year-old girl staying here who also speaks only Spanish, but her family speaks English as well.

Summer and I ran into Spencer and his family all day. We saw them first at the proton center, then back in the common room at Christopher's Haven, and then we were in appointment rooms across the hall from each other at the Oncology center this afternoon. The nurse there brought out the bubbles and Summer and Spencer had a lot of fun popping them while we waited for our respective doctors.

The afternoon appointment with the oncologist was fine - mostly just a chance to go over Summer's history with him and make sure we're all on the same page since he'll be the primary oncologist for her while we're in Boston. Nothing new came out of the meeting, except a promise to connect us with the neurologist here so we can finally get Summer weaned off of Keppra.

After the appointment, I told Summer we were going home. When we walked in the door of our apartment, she had a meltdown because she thought I mean home, home "with Daddy and Rocky!" Poor kid.

Summer is still adjusting to Boston time, and the morning anesthesia isn't really helping. She skipped her nap yesterday and I couldn't keep her awake past 7pm. Luckily (well, sort of...), she woke up at 11:30 for a last minute snack before the midnight cutoff for eating. Unfortunately, she was then awake until sometime after 1am. She skipped her nap again today, so hopefully we're not in for the same thing tonight. She probably would have taken a nap around 3 or so, but unfortunately we were at an appointment at that time. Maybe we'll have better luck tomorrow since we don't have any afternoon appointments.

One down, 27 to go!

2011-01-18T12:22:00.000-08:00

Summer's first radiation treatment was this morning. We were thankful for the short commute (a walk across the street) because the snow was coming down in silver-dollar-sized chunks when it was time for us to head over to the hospital. Amazingly, we made it over there without falling down - it was so slippery!

On the first treatment day of each week, Summer has to have her port accessed. This means that I apply numbing cream about an hour before our appointment, and then they poke a needle into the port in her chest. Attached to the needle is some plastic tubing that connects to the IV and can be used for blood draws. This needle and tubing is left in place (not hooked to anything, except during treatment) for the whole week so she doesn't have to get poked daily, just once a week.

Today was our first experience with that process and it was very upsetting for Summer. I don't think it hurt her at all, thanks to the numbing cream, but she was not happy about being messed with and got quite worked up about it. Once they had her all hooked up and everything taped in place, she settled down and fell asleep in my lap.

We waited 10 minutes or so until it was our turn, and then I carried her, still asleep, down to the radiation room where they administered the anesthesia medication (propofol) and put her under. Then I moved her to the table, gave her a kiss and headed out for a snack.

About 30 minutes later, they called me back to the prep and recovery room to sit with her until she woke up, another 15 minutes or so later. She woke up cranky, which is pretty typical of her when coming out of anesthesia, but was back to normal within 30 minutes or so.

So far, I haven't seen any side effects from the treatment. Her appetite has been good - especially since rice crispy treats were waiting for her when she woke up - and her activity level has been normal.

Her endocrinology appointment was rescheduled because the snow prevented that doctor from making it in to work, so we're done for the day.

Getting settled in Boston

2011-01-17T17:42:00.000-08:00

We arrived in Boston yesterday evening. We didn't have a direct flight this time, and had a layover of just over an hour in Chicago. Both flights went very well - Summer is turning out to be a great flyer. Kind of surprising for a kid who normally can't sit still!

We went straight to Christopher's Haven and started settling into our new studio apartment. It's an older building, but a team of interior directors volunteered to redecorate all of the Christopher's Haven apartments a while ago, so they look really nice.

Our address here is:
1 Emerson Place #2-L
Boston, MA 02114

Here's a quick tour, starting from the entry:

Immediately to the left is a dressing/storage area, with a dresser and large closet, and the bathroom:

Further down the hallway on the left is the kitchen:

It's narrow, but has everything we'll need - even a rice cooker and a crock pot. Also, it will be very nice to be able to keep an eye on Summer while I'm cooking.

Here's the main room:

The picture doesn't do it justice - it's actually quite large and bright. There's a full-size couch (on the right) and the over-sized chair just past the bed converts into a twin.

To the left is an eating area:

On the other side of the half wall is Summer's nook, complete with a play kitchen to make her feel right at home:

Christopher's Haven also has a community area on our floor that is open during the day and has tons of other toys, including a train table and doll house that Summer didn't want to leave when it was time to go. They have lots of movies and books you can borrow too.

The building has concierge service and a very nice laundry facility in the basement. It's a great place - we're so glad we are able to stay here!

After unpacking, we bundled up and headed out for dinner and a little grocery shopping. Jason and I had been to a burrito place a few blocks away while Summer was having some scans during our last trip. It is only place in the immediate area we had tried and knew to be good, so Summer and I went there for dinner before heading over to Whole Foods to pick up some groceries.

We thought it was cold last night (low 30s), until I checked the forecast this morning and saw that the high for today was 17! We had planned to make a run to Target and the mall, but decided to just stay in for the day. Tomorrow is supposed to be a balmy 38 - maybe we'll venture then.

Summer's first treatment is in the morning, and she has an endocrinology appointment in the afternoon, so I'll post another update tomorrow.

We're home!

2011-01-11T12:18:00.001-08:00

Summer is doing well, and is only a little uncomfortable. She's resting on the couch, watching Tinker Bell.

She's done!

2011-01-11T09:30:00.001-08:00

Just talked to Dr. Javid and everything went as planned. They're doing some final x-rays and then we'll go meet her in recovery. We'll be here a few more hours, but expect to head home around lunchtime.

Summer just went into surgery

2011-01-11T07:54:00.001-08:00

Should be done in 45 minutes to an hour.

Surgery rescheduled - woohoo!

2011-01-10T15:53:00.000-08:00

Just got a call from Children's that they've rescheduled Summer's surgery for 7:30am, with a 6:15 check-in. So much better!

Yet another afternoon surgery...

2011-01-10T14:17:00.000-08:00

Summer is having her port-a-cath placed tomorrow afternoon. Afternoon surgeries are miserable. For anyone, I'm sure, but even more so for a two-year-old. And the two-year-old's parents!

We check in at 2:15 for 3:30 surgery, which means Summer can't have milk or solid food after 7:30am, and clear liquids until 11:30. She's not a morning eater to begin with, so really that means we better pack her full of food before she goes to bed tonight. I'm planning a 9pm run to the Ranch Drive-In for french fries and a milk shake.

Part of the problem with afternoon surgeries is that, by the end of the day, the hospital is inevitably running late. Last time they started two hours late - hopefully this time won't be quite as bad.

The surgery itself is about 45 minutes, start to finish. She'll have some recovery and monitoring time at Children's afterward, but we should be going home tomorrow evening if all goes well.

As always, I'll post quick updates throughout.

Fun in Boston

2011-01-06T15:51:00.000-08:00

We have been having a great time here in Boston so far. It's definitely cold (32 was the high today, and some snow is forecasted for tomorrow), but it's been clear and we've spent a lot of time exploring the city.

Waiting to board at SeaTac

The flight was great - Summer did really well. We tried to bring her car seat on the plane, but it is so big that it would have left only about an inch of room between the edge of the car seat and the seat in front of her. We didn't want to fight a 5 1/2 hour battle about kicking the seat, so we decided to gate check the car seat instead. It was good to figure that out on this trip; now I won't bother lugging the car seat with me when Summer and I fly back out here on our own.

Summer colored, played with her toys and watched movies on the flight, and only fell asleep for about 30 minutes at the end. She woke up as we started to descend because her ears were hurting, but that was the only time she got upset on the whole flight. I'm curious to see how she handles the flight back since it won't be quite as new and exciting, and our flight will be at the end of the day when she'll be tired and presumably more irritable.

We arrived in Boston Saturday evening, took a cab to our hotel.

The view from our balcony

We ditched our stuff and wandered around the couple of blocks near the hotel in search of food. We're close to a lot of familiar restaurants - McCormick's, Maggiano's, PF Chang's - and some not-so-familiar ones too. We ventured into Chinatown, which starts about two blocks from our hotel, and found some good Thai food to bring back to our room for dinner.

We had no particular plan for Sunday, which was the one warmer day since we arrived. We went for a walk in Boston Common, which is a block from our hotel.

We've yet to find the duck statues (going to have to look up a map of the park - it's quite big), but we did find some leftover snow, which made Summer quite happy.

And squirrels with funny little (big) ears.

Summer's favorite thing about Boston is definitely the subway system. We ride it several times daily, but the excitement has yet to wear off. It's the first thing she asks to do when she wakes up every morning. "Let's ride the green train!"

Monday was our first day of appointments. We were warned against taking pictures in the hospital, but here's Jason and Summer heading in for the first time:

Massachusetts General is a seriously busy hospital. It's like being in an airport at peak travel times. We have our little path between the entrance and the proton center, and from the proton center to the radiology center, but other than that we'd be lost.

On Monday we met with the nurse who will see Summer every day (Rachel) and Dr. MacDonald, Summer's radiation oncologist who will be directing Summer's treatment while we're here. They have a great play room in the proton center, and we met the music therapist who is there on M, W, and F to play music with kids in the play room.

We had our appointment with Nurse Rachel and Dr. MacDonald in the recovery room where Summer will get ready for and recover from her treatment every day. They have toys to play with in there too, and it's very clear that they have a special kid-oriented program there. Nurse Rachel said there are actually two other kids younger than Summer who will be having radiation at the same time as Summer, which was comforting (although sad) to hear.

We talked about the treatment, the day-to-day stuff and what to expect. Nothing drastically new, but a little more information about a couple of things we already knew.

Summer will have to have a central line of sorts put in for the daily administration of anesthesia. There are a couple of ways they could do this, and we've chosen something called a Port-a-Cath. Here's wikipedia's description. While this will require a surgical procedure to install and remove, it will require the least maintenance while in use, and will have nothing attached on the weekends to bug Summer on non-treatment days.

We believe she'll have the Port-a-Cath surgery at Seattle Children's on Tuesday, although we don't know the time for sure yet. After it's in place, there will be a bump under the skin of chest, below her collarbone. During treatment, we'll apply numbing cream and insert the IV lines directly into that bump every Monday. They'll be left in place (taped down, but not attached to anything) through Friday's treatment and then removed for the weekend. After treatment is done, they'll remove the Port-a-Catch completely.

We also learned a little bit about the dosing for her treatment. They give proton radiation in doses of 50.4 to 54 "gray." 54 is the max because that's the most they've shown optic nerves can handle. They also have a range for the number of sessions, between 28 and 30 days. Summer, because she's so young, will be at the bottom end of both ranges (50.4 gray for 28 days of treatment). They have seen no decrease in effectiveness at the lower end of this range.

I had never heard actual numbers before, but Dr. MacDonald told us that radiation has a 80-90% success rate at controlling this type of tumor. Cyst re-accumulation is not uncommon in the first year after radiation, and we're hopeful that the shunt will work long enough for the radiation to work its magic and stop the cyst from refilling.

There are some temporary side effects from the radiation - hair loss, burns and rashes, slight lethargy, possibly nausea and vomiting (pretty rare), as well as temporary visual side-effects. As I've mentioned before, in the long term it's likely that she'll lose some hormone function, primarily thyroid and growth hormone production. Both of these can be compensated for. We'll likely need to increase the dose of the thyroid medication she's already on and start daily growth hormone injections, but these effects can take six months to a year to show up.

It's possible, but pretty unlikely, that she could get diabetes insipidus or hypothalamic obesity as a result of radiation. Those things are more commonly caused by surgery, and luckily we've avoided them so far.

After this appointment on Monday, we walked over to Christopher's Haven, which is literally across the street from the hospital. We met Katelyn, the coordinator there, and got to see the common area and one of the rooms. After spending a couple of days in a hotel with no kitchen, I am definitely realizing how nice it will be to have a kitchen of our own!

Monday evening, we rode the subway out to a mall in Cambridge to get out of the hotel room and let Summer run around someplace warm. I haven't found any info about play areas at the malls here, so if anyone knows of one please let me know!

On Tuesday, we met with the anesthesia nurse to go over Summer's anesthesia history, and then we headed out to the aquarium.

It's a relatively small aquarium, but we had fun watching the sharks, penguins and seriously massive sea turtles.

We wrapped up the day with dinner at Boston Market - yum! It was every bit as good as we remembered.

We had no appointments yesterday, and had planned ahead to spend the day at the Boston Children's Museum. The subway took us pretty close (we got off at Summer street).

And then we had a nice little walk along the river to get there. Boston is a beautiful city.

We ended up buying a membership, which I know we'll pay off in visits when Summer and I come back. Here are some of our favorite things from the day:

The bubble room.

The climbing "thing."

The light-up dance floor.

The sand zone.

Well, as Jason says, this is turning into a Guiness Book of World Records post (for longest ever)...so I'll try to wrap it up quickly. Six days is a lot to catch up on! We had dinner Wednesday night at PF Chang's, which has an amazing gluten-free menu.

Today, Summer had her CT scans and treatment mask made. The hospital rewarded her with a Rex flashlight, which she was very excited about. We didn't see the scans, but it sounds like they saw just what they were expecting. They left the IV port in her hand and bandaged it up really well, so hopefully she won't have to have the anesthetic gas again tomorrow for her MRIs. She doesn't do well with the whole face mask thing, so it would be great to avoid that if we can.

We've adjusted to hotel life, and have come up with ways to keep ourselves busy.

Wandering the hotel.

Summer thinks this is fun as long as we don't run into Ben, the bellhop, who Summer is terrified of for some inexplicable reason.

Skyping with Rocky.

Movie time.

Building forts.

We're very much looking forward to coming home tomorrow!

20" of snow can sure ruin your travel plans...

2010-12-28T12:55:00.000-08:00

The blizzard that hit the east coast Sunday and Monday resulted in our Monday morning flight being canceled. After an hour and a half on hold with Alaska Airlines, I got a call from Jason's mom who had been able to get through on the travel agent line quite quickly. Because of all the cancellations that happened before ours, the earliest flight we could get out would have been a red-eye (with a layover, if I remember correctly) on Wednesday night that would have gotten us to Boston part-way through our last day of appointments. Otherwise, there was nothing until Friday.

After some email exchanges with the coordinator at Massachusetts General who, thankfully, was working from home, we decided to reschedule everything for next week. We don't have the final schedule of appointments yet, but we'll be flying out on Saturday the 1st, coming home the evening of Friday the 7th.

Unfortunately, this delay pushes everything back. Her new radiation start date will be January 18th (originally January 11th), with her final treatment date around the 1st of March. We had some appointments here next week and in the last week of February that I'm now working to reschedule. I am also waiting for confirmation from Christopher's Haven on whether this will put our spot there in jeopardy or not. Feels like we're back to square one with planning...hopefully I'll know more soon.

Happy Holidays!

2010-12-23T09:09:00.000-08:00

Didn't get around to mailing Christmas cards this year, so here's one for everyone!

A busy holiday week

2010-12-23T08:26:00.000-08:00

As if the week of Christmas isn't a busy enough time, we had a slew of appointments this week and we fly out to Boston on Monday. This Christmas is definitely going to be a bit of a blur.

Summer had a CT scan Tuesday afternoon to check that the shunt is draining the cyst properly. We were a little apprehensive because of a comment she made to Jason on Monday about her eyes: "I don't like my eyes. I want better ones." It's enough to break your heart!

She's made comments about her eyes not working quite right from time to time, but it had been a while. In light of the recent surgery and new draining system, we decided to call neurosurgery Tuesday morning and they squeezed us in that afternoon, just to be safe.

When the tech came to get us from the radiology waiting room, Summer immediately knew what she was in for. She started telling us "No, I don't want to. I don't like to lay down." She became pretty frantic when we walked into the CT room, but once she was swaddled onto the table and we started counting with her, she calmed down.

The CT showed the cyst at about half the diameter it was pre-surgery, so that's great news! It is draining slowly, as intended. It could be that the comment about her eyes was related to the reduced pressure on her optic nerves and the funny feeling that might be giving her.

The neurosurgery nurse checked over her incisions and removed the bandage on her belly (aka her "belly bandy"), which Summer was actually pretty upset about. She had been proudly showing off her belly bandy all week. Now she can show off her incision and stitches instead!

Wednesday morning she had another VEP (the vision test where they hook all the electrodes up and watch her brain waves react to visual stimuli) with Dr Kelly and an eye exam with Dr Baran. Summer cooperated very well for the VEP, but lost patience with the eye chart test pretty quickly.

We also tried a new way of looking at her optic nerves, which is to have her look into this piece of equipment that basically takes enlarged pictures of the inside of her eye. She did much better with this than Jason or I expected, but not quite well enough to get out of having her eyes dilated and checked by Dr Baran. It's too bad too, because the dilating drops and eye exam afterwards were a HUGE battle. Maybe next time!

Neither the VEP test or eye exam showed any decrease in function, which was exactly what we were hoping for!

So now we've wrapped up the appointments for the week and have a couple of days to get ready for Christmas and our first trip to Boston. Thankfully, we've had tons of help getting this trip planned. We owe huge thank yous to a lot of people. Here's a start:

BIG THANK YOUS...

...to our amazing co-workers and employers who have been extremely supportive, accommodating and helpful in so many ways

...to everyone at Stellar Travel, where Jason's mom works, for organizing and taking care of our airfare on this trip

...to my aunts and uncles for donating air miles to cover our flights for the six-week stretch

...to everyone who has made donations, through the blog or otherwise

...and to all of our families for being family and doing what families do

All of it goes a long way toward helping pay for our stay in Boston and the medical expenses that will come over the next few months. You can't imagine how much we appreciate it. Thank you.

Home and recovering well

2010-12-16T16:26:00.000-08:00

We came home from the hospital yesterday around noon, less than 24 hours after surgery. We spent most of the afternoon on the couch, watching movies and eating snacks. She didn't seem to be in pain unless we were moving or repositioning her, and then she'd complain about her tummy or her neck hurting. She was running a bit of a fever and wasn't really interested in moving around on her own at all.

Until Logan and Claire showed up, that is. She was up and about with them, showing them her new toddler bed and playing with her toys, and we started to think she'd been milking us for all we were worth earlier in the day. But as soon as they left, she was back on the couch and uncomfortable again. I think the kids were a good distraction from the pain, and it was great to see her up and about at least for a little while.

She's been doing really well today, getting more and more back to normal as the day goes by. We started out on the couch again for most of the morning, but by lunchtime she was up and about. By naptime she was back to climbing on everything, and making me really glad we converted her crib to a toddler bed on Tuesday.

The bandage hasn't come off her head yet, so I still haven't seen exactly what the shunt looks like under there. I'm anxious to see it, but we're supposed to let the bandage fall off on its own. The swelling has increased a bit since right after surgery, but she's still nowhere near as swollen as after her other surgeries.

I gave her a bath after lunch today and was able to get a better look at how the tube comes down from her head to her abdominal cavity. You can see it come behind her ear, along the side of her neck and down her chest until just below her ribcage where it goes below the muscle and into her peritoneal cavity. It's definitely visible, especially with the bruising and redness around it. Once that goes away, you might not notice it if you didn't know it was there.

We got the final schedule for the planning appointments we'll have in Boston the week after Christmas. We'll have nine appointments over three days, which isn't too bad. Two of the days, she'll have to go under anesthesia for extensive MRI and CT scans (1.5 hours and 2 hours, respectively), but the rest of the appointments are things like anesthesia evaluations, meeting her radiologist, nursing assessments, etc. We'll also try to get over to Christopher's Haven to see where we'll be staying.

Today I booked our hotel for the trip. Hard to believe we leave in 11 days! We'll be staying at the Radisson just across the street from Boston Common. I happened to get an email from Travelzoo with a great deal at this hotel just yesterday, looked it up and found out it's only a mile from MGH, so it worked out perfectly!

We will be coming home on the 31st and plan to fly out again on January 10th, the day before starting treatment.

We're on our way home!

2010-12-15T11:24:00.001-08:00

Post-op update

2010-12-14T21:15:00.000-08:00

We're settled in Giraffe 3022 with Summer now. She was still pretty groggy and cranky when they first brought her down to the room, but is doing much better now. She's cuddling with Jason in the rocking chair, watching Toy Story 3.

Dr Browd said the surgery went well. It took about an hour, and everything went just as planned. She has a small incision on her belly. They shaved the side of her head completely and re-opened about 1/3 of the length of the previous incisions. She has tiny punctures all down her chest that must have been to help guide the tube or lift the skin, but nothing else requiring stitches. There's a little puffiness around her eyes, but the swelling is nothing compared to her last surgeries.

The shunt itself is actually pretty big - much larger than the Ommaya. Prior to today, I didn't realize there would be any sort of device implanted. I had just pictured one big tube connecting to the catheter and running down into her abdomen. In reality, the shunt looks something like this. I'm not sure if that's the exact one she has, but the specs are similar. It is about as thick as your thumb, according to the neurosurgery resident we saw before the surgery, and has five flow-level settings.

As you can imagine, that leaves a good-sized lump on the side of her head. It's currently hidden by a bandage, so I'm not sure what it actually looks like, but hopefully it won't be too noticeable once her hair grows back.

Dr Browd could tell the cyst was putting some pressure on the Ommaya because of the rate of fluid production. The shunt is currently set at 1 (the settings range from .5 to 2.5), which will drain the cyst at a slower pace. They'll probably do a set of CT scans tomorrow to see how it's progressing and again in about two weeks. They can always adjust it as needed using a magnet, and they'll actually have to re-program it after every MRI going forward.

The catch with this shunt is that we'll never be able to tell whether the radiation has stopped the cyst from refilling or if the shunt is just continuing to do its job and drain the cyst. Of course, if after radiation the cyst continues to refill we know that both radiation and the shunt have failed. It is a relatively temporary solution as shunts have a 40% failure rate within two years. The hope is that the shunt will get us through radiation, the radiation will work and if/when the shunt does fail in the future, it won't matter because the cyst isn't refilling anyway.

As of right now, the plan is still to head home tomorrow.

She's done!

2010-12-14T17:40:00.001-08:00

We haven't seen her yet, but just got done talking to Dr Browd and everything went well!

I'll post more details later.

They just took her back

2010-12-14T16:14:00.001-08:00

We won't get any mid-op updates since this one's so quick. I'll post when she's done!

Surgery delayed to 3:30ish start

2010-12-14T14:56:00.001-08:00

Playing Candy Land while we wait.

Surgery is tomorrow

2010-12-13T12:38:00.000-08:00

Summer had a couple of pre-op appointments this morning. Both went well - she is getting to be such a big girl. She didn't put up a fight for a single test or measurement and was very talkative with the nurses. She even asked one to kiss her head and invited her to our house to meet Rocky and Chloe.

I kept telling Summer "no pokes" all morning...but the nurse at the second appointment made me into a big fat liar. She needed a current blood count, so Summer had to get a finger poke after all. She took it in stride though, and didn't put up much of a fuss.

We finally found out the surgery schedule and recovery details. We'll check in at 1:15pm tomorrow. It's no fun having surgery at all, but surgery that late in the day makes for a miserable morning. Summer can't eat after 6:30am and can only have clear liquids until 10:30am, nothing after that. I think the surgery actually starts at 2:30, but I can't remember for sure. Luckily it's written down somewhere.

The surgery will take about an hour to an hour and a half. She won't need to be in the ICU after and will go straight to the recovery floor. They'll keep her overnight and she'll likely go home on Wednesday. She will be in some pain from the placement of the tube and the incision in her abdomen, but it all sounds pretty manageable.

We don't yet have the full schedule for Boston, but that should be coming sometime today. I did get confirmation that we'll be able to stay at Christopher's Haven starting on January 10th (right now radiation is slated to start on the 11th, so that's perfect timing). I spoke to the manager there this morning, and it really sounds like a great place. We hope to be able to go visit when we're out there for prep stuff in two weeks.

I'll post brief updates tomorrow when Summer goes into and comes out of surgery.

Surgery Tuesday, Boston the week after Christmas

2010-12-09T17:27:00.000-08:00

After my last post, I got a call from Dr Geyer to fill us in on the tumor board's discussion about Summer yesterday afternoon. He had talked to them about periodically draining the cyst up until (and probably during) radiation to keep it small. The smaller the area to be radiated, the better.

In their meeting, Dr Browd suggested instead converting her Ommaya reservoir into a permanent ventriculoperitoneal (VP) shunt that would continuously drain into her abdominal cavity and prevent the cyst from filling up at all. The board agreed that this was a good idea - not only will it keep the cyst at its smallest for radiation, it will alleviate the trauma caused to her brain by the cyst repeatedly growing and shrinking as it fills and is drained.

Dr Geyer gave us a heads up that they were recommending this so we wouldn't be surprised when neurosurgery called to schedule the surgery, but didn't have any details about the surgery itself. He assumed it would be similar to her prior surgeries. I was pretty skeptical at first - I wasn't sure that it was really worth another invasive surgery and all the risks that go with it - so when the neurosurgery scheduler called this morning to set up the surgery, I asked her to have Dr Browd call so we could talk it through.

I spoke with Dr Browd this afternoon and he explained the surgery in a little more detail. He will re-open her scalp along the same incision line (probably not the entire thing, just a smaller part around the reservoir), pop off the Ommaya reservoir and attach tubing. The tubing will be fed down behind her ear, down her neck and into her abdominal cavity, all underneath the skin. He will make a minor incision at her belly button to help guide the tubing down into her abdominal cavity. He wouldn't need to open her skull at all.

The recovery is quick - she'll likely go home the next day, unless she is having trouble managing pain, in which case they might keep her an extra night. After talking to Dr Browd, we felt much better about the surgery and have decided to go through with it. It will provide us some relief, not having to stress about the cyst filling up again, and it will make radiation safer and more accurate without the cyst size continually changing.

We'll have some pre-op appointments on Monday, and the surgery itself will be Tuesday, probably early afternoon. We'll find out the scheduled time at the appointments on Monday.

I also spoke with Anne at Mass. General, and we now have a loose timeline laid out. We will fly out to Boston the week after Christmas for a few days of preparatory appointments. Then there will be a break (a week to a week-and-a-half) before radiation actually starts. During that time, they build custom equipment specifically designed for Summer and her tumor. We haven't decided whether Summer and I will come home during that break or not. The actual treatment will then start the second week of January and continue for six weeks.

I'll have more specific dates and an answer from Christopher's Haven on whether they'll have a place for us sometime tomorrow.

Boston, here we come.

2010-12-08T14:09:00.000-08:00

Summer had a HASTE MRI this morning to see if the cyst is still producing fluid. The scan itself went relatively well. Only one parent is allowed back with her, so Jason took her this time while I waited in the waiting room. Summer wasn't happy about being strapped to the table again, but the nurse asked her to help count to 10 as a distraction. She told Summer that when they got to 10 she would be done and could get back up.

Nurse: "1"
Summer: "2"
Nurse: "3"
Summer: "10. 10! 10! 10!"

When the scan was over, Summer told Jason "that was a great nurse!," gave hi-fives all around and said bye to everyone before coming back out to me. Usually when she's upset about something, she won't say a word and buries her head on our shoulders until we leave, so she must not have thought the whole thing was too bad.

We then met with Dr Geyer to review the results and he cut straight to the point - the cyst is bigger than it was at her 11/15 scan, and is only a few mm shy of the 8/11 scan when it was at its largest. So now we know the Interferon didn't work, and we're officially planning on Proton Radiation at Massachusetts General Hospital as the next step.

Dr Geyer drew somewhere between 6 and 7mL of fluid out through the Ommaya today. He said he could have taken more, but would prefer to draw it out in stages. We'll probably take her in for weekly or bi-weekly fluid draws between now and leaving for Boston.

Also before we go, Summer will probably have another VEP test to establish her visual baseline, and perhaps an EEG to spot any potential issues before we wean her off Keppra, the seizure medication she's been on since her last surgery as a preventative measure.

I called our contact at Mass. General and let her know the status. Over the next few days she'll start scheduling and we'll know more specifically when we'll be there hopefully by the end of the week. Sounds like it will be early January. We'll have a few days of preparatory stuff to do there, and then a week or week and a half of waiting until the actual treatment can begin.

I also put word in with her that we'd prefer to stay at Christopher's Haven if at all possible. It looks like a really great setup - a set of fully-furnished apartments across the street from the hospital. The apartments are reserved for families traveling there for proton radiation, but there are only seven of them, so hopefully we can get one.

As unfortunate as it is that Summer will go through radiation at such a young age, the wait-and-see approach was extremely stressful and emotionally challenging for us, so there is quite a bit of relief in having a definitive plan for treatment.

The news is...no news.

2010-11-15T16:15:00.000-08:00

We didn't learn anything definitive from this morning's scan.

The cyst is slightly smaller than we saw in her last scan on 11/3. While it's always good to see the cyst smaller, that doesn't really come as a surprise to us since Dr Browd drew 4mL of fluid right after her last scan. What we can't tell is whether the reduction in size is equivalent to 4mL of fluid, or if it re-accumulated some fluid after the draw.

If you read my last post, you'll know that we anticipated this might be a problem. Dr Geyer had thought that if it had been filling up as quickly as it has done in the past, we would have been able to see it. Perhaps it's slowing down, but it's really impossible to know at this point.

So, we'll have another HASTE MRI on 12/8 that will give us a better apples-to-apples comparison.

The HASTE MRI was very quick. And thank goodness for that - Summer hated the entire 30 seconds of it. But after that, she calmed right down. Apparently the entire thing was MY fault because the second she was done she said "All done. I can see my daddy now please?" From leaving Jason in the waiting room to walking back out to meet him, we were probably gone 2-3 minutes total.

Last week, we got a call from endocrinology to go over her lab results from 11/3. Everything looked normal (even her growth factors, amazingly enough), except her thyroid stimulating hormone (TSH) is still high, which means her thyroid is not functioning at 100%. This is a little bit contrary to what we'd heard before (from the HemeOnc nurse), but I figure we should trust the endocrinologist to know best about the endocrine function...

The TSH is pretty borderline high, but we've been monitoring it for six months now and it's continually high. Since good thyroid function is especially important for brain development at this age, they decided we should start her on some thyroid medication. She takes half of a tiny pill first thing every morning. Piece of cake. They'll retest her TSH levels after she's been on the medication for a couple of weeks, just to make sure it's working.

They also asked us to come in for another stim test - I'm not sure that I wrote about the actual test itself last time we had this done, but it was horrid. Assuming it all goes well, it shouldn't be too bad, but it didn't go very well last time. She'll have an IV injection to stimulate cortisol production, and then blood draws (theoretically from the same IV...but that didn't really work out so well last time) every 30 and 60 minutes to see how she's responding. That test will be this coming Wednesday, and we'll get the results back at our endo appointment on 11/24.

More waiting...

2010-11-11T09:14:00.000-08:00

Dr Geyer called us this morning to relay the discussion from yesterday's tumor board meeting. As I suspected, we're going to have a few more days of uncertainty about next steps.

We want to make sure the Interferon treatment actually failed before moving on to radiation. There wouldn't have been any point in trying Interferon if we weren't willing to give it the time it needs to work.

On Monday, Summer will have the HASTE MRI to check cyst size again. At that point, if they see noticeable growth, we'll probably head for radiation. If not, it may be that the Interferon treatment did work after all, and we'll continue to monitor with frequent scans.

While we agree this is the right approach, I have one concern about it - they drew fluid out of the cyst right after the MRI last week, so we don't have an apples to apples comparison point for cyst size. Will they really be able to tell whether there is any increase in fluid by comparing the 11/3 MRI with the 11/15 MRI? Seems like a little bit of guess work will be involved since they'll have to factor in the 4mL they withdrew.

I mentioned this to Dr Geyer and he thinks they will be able to tell, especially if it's filling up as quickly as it has in the past. But, this is a relatively short time frame between MRIs--not even two weeks--so I'm not sure I'll be satisfied with the results if, come 11/15, they see no change.

Given that bit of uncertainty, if the scan shows no change, we're going to push for the next MRI to be sooner than six weeks out. Since the cyst accumulated ~3 mL in less than four weeks, I don't want to wait any longer than that for the next scan.

I'll post more after our appointment on Monday.

Ophthalmology appointment and the waiting game

2010-11-09T12:45:00.000-08:00

Summer's ophthalmology appointment was this morning. Summer was not exactly in a mood to put up with their tests, but they at least got some of what they needed. She's really not a morning person. No idea where she got that from... ;)

Now that she's a bit older, they use a different test to check her visual acuity--how well she sees when she's focused on something. This was more like the standard eye chart test, but with pictures instead of letters and only one appearing on the screen at a time.

She refused to let them test each eye individually, but with both eyes together she got up to 20/50 before giving up--not, I don't think, because she couldn't see the shapes, but because she was cranky and frustrated.

Even 20/50 is an improvement from her last eye exam, and well within the normal range for her age. I'm guessing her vision is even a little better than that.

They dilated her eyes and could see no swelling on the optic nerve that would indicate pressure from the cyst, so that's good. As before, the nerves showed a little pallor which indicates some damage, so unfortunately they haven't magically repaired themselves. Her left eye appears to be slightly worse than the right.

They asked us to come in in two weeks for another eye exam when she's (hopefully) feeling a little more co-operative, and they sent us home with a few eye patches and a chart to practice with.

We also received a call from HemeOnc to cancel our appointment with Dr Geyer tomorrow afternoon. He wanted more time to talk to the different providers in more depth after Tumor Board, so he's going to call us Thursday morning instead.

The scheduler also mentioned that they are waiting for the HASTE MRI results too, so although she didn't come out and say it, I got the distinct impression that we should expect much in the way of a firm plan when we do talk to Dr Geyer on Thursday morning.

A little more about Wednesday's appointment and what's next

2010-11-05T13:01:00.000-07:00

As I mentioned in my brief post on Wednesday, the MRI showed no change to the tumor mass but an increase in cyst volume since the last MRI on 10/4. The cyst was still nowhere near as big as it was in August before her second surgery, thankfully.

During the appointment, we looked at the scans and reviewed the blood work results that had come back so far. Her thyroid function was slightly elevated, as it has been for all of the labs over the past six months. This could mean that she has lost some pituitary function and her thyroid is working a little harder to compensate, which is exactly what it's supposed to do.

Her growth hormone indicator levels had not yet come back, but I suspect they'll be low considering that she hasn't grown or gained weight in quite a while. Where she used to be 65th percentile for height and 10th for weight, she is now off the charts on the low end for both. Growth hormone production is something we knew she'd lose eventually - whether from the tumor itself or radiation - so this is not really a surprise at all.

Her neurosurgeon, Dr Browd drew just over 4mL of fluid out through the Ommaya reservoir while we were there. As a point of comparison, they drew 10mL out before the first Interferon treatment, and 1 - 1.5mL prior to each Interferon injection. The last time they drew fluid out was 10/11, and they then injected 1mL of Interferon back in, so the cyst had produced about 3mL in three weeks and two days.

There's a possibility we haven't given it enough time, and that perhaps the cyst produced 3mL of fluid in the first week or two after treatment and has since stopped. However, the more likely case is that it simply didn't work. Summer will have a HASTE MRI (a very quick MRI with no anesthesia - comparable to the quality of a CT but with no radiation exposure) on Monday 11/15 to confirm whether or not the cyst is continuing to produce fluid.

We'll have quite a few appointments over the course of the next few weeks:

Tues 11/9 - ophthalmology at Bellevue (just dilation and check-up, no VEP)

Wed 11/10 - tumor board will review her case, and we'll meet with Dr Geyer to review tumor board discussion

Mon 11/15 - HASTE MRI, then review of scans with the nurse practitioner

Wed 11/24 - endocrinology with Dr Pihoker

We'll also be coordinating with Children's to send everything over to Boston again and they'll review Summer's case again on the 17th.

Dr Browd, indicated that his preference would be to send her for radiation now, since this cyst has repeatedly shown us it won't act the way we want it to. There are a few other options on the table though, so we'll see what they recommend after the board meets on Wednesday. It wouldn't be the first time we got ourselves in the radiation mindset and found something else to try first.

As always, I'll post more when I know more.

This darn thing is persistent

2010-11-03T15:31:00.001-07:00

The tumor mass showed no growth, but the cyst did. It is not as big as before the last surgery, but it's definitely bigger than her last scan a month ago.

Dr Browd drew out a little more than 4mL of fluid today to shrink it back down. They will talk about her at tumor board next Wednesday to come up with a recommendation for next steps.

Six months ago today...

2010-10-29T10:28:00.000-07:00

It's hard to believe it was exactly six months ago that we found out Summer had a brain tumor and she was undergoing her first brain surgery. It's even harder to believe that I had to write 'first' brain surgery because she's had two in that six-month timeframe. Add a little chemo to top it off...talk about a whirlwind!

Six months sounds like a very short time, but it feels like ages. I can't even remember what it was like not to worry about a brain tumor and how it will affect all of us for the rest of our lives.

We've been confronted with that worry every day. Is she rubbing her eyes because her vision has changed or is she just tired? Is she cranky because she has a headache from the tumor growing or is she just being two? Is she peeing a lot because she's developed Diabetes Insipidus or is that just how much she drank today?

We know there will be more hard times ahead, so we've been doing our best to keep things light and have fun every day. Sometimes that means we strip her down and let her finger paint on herself and the kitchen floor. Other times it's french fries and milkshakes for dinner, or covering the bath tub with crayon scribbles almost every night.

In that six months, Summer has gone from being a baby to a kid. She is active and very opinionated, and such a strong little girl. She turned two, learned a million new words, got potty trained and played hard. She loves to help cook dinner or make birthday cakes in her play kitchen, run laps around the house, and paint. She doesn't seem to be fazed at all by this whole thing, and we are so thankful for that.

Here's a little taste of our dynamic ~~baby~~ big girl:

What's next?

2010-10-20T13:34:00.000-07:00

Summer will have an MRI on November 3rd to see if the cyst has continued to grow. We'll see Dr. Browd a few hours later to get the results. We love the Wednesday morning MRIs because it's the same day as the Tumor Board meeting, so they can review her case the same day if something comes up on the scan.

In the meantime, we're having a nice break from hospital visits. Summer hasn't asked even once about going to the doctor, which surprises me a little since she talked about it quite a bit during treatment. She's getting to that age now where she actually internalizes the things we tell her - it's pretty amazing.

She does love her doctors kit, and frequently "checks" us with a stethoscope, looks for monkeys in our ears, takes our blood pressure and gives us "pokes" in the head. I haven't picked a Halloween costume for her yet, but maybe some tiny scrubs are in order.

So what do we do with all the free time now that we're not at the hospital three times a week? Potty training! Summer has been doing really well with it at home, and now we're working on going out without diapers too.

There's not much else to report. I'll post again after her MRI, unless something comes up between now and then!

Run of Hope and almost done with Interferon!

2010-10-07T23:33:00.000-07:00

We've had a busy couple of weeks since I last wrote, including several more Interferon treatments, an MRI and the Run of Hope, in addition to every-day things like a visit to the Children's Museum, a day-trip to the cabin and visits with family and friends.

We've had great treatment sessions, like the one I described in my last post, and not-so-great ones where Summer is a bit more uncomfortable. We're not sure what the difference is from one treatment to the next, but suspect it might have something to do with how quickly they draw the fluid out. They try to pace it, but there's a delicate balance between going so slowly that Summer gets impatient and squirmy (doesn't sound like a big deal, but when you have a needle sticking in your head, it is...), or going too quickly and causing a headache.

With each treatment, Summer's reaction had been increasingly mild. If she gets a fever at all, it's very slight and doesn't last long. She also hadn't been as sleepy the day following treatment as she had been initially. Sometimes, she doesn't seem to be fazed at all.

She has a lymph node behind her right ear that swells up after each treatment, her body's reaction to having a needle poked through her scalp. We've been assured that nothing inside her skull would be draining to that lymph node, so it isn't anything to worry about, and it has usually returned to normal size in time for the next treatment.

We did start to get concerned last Monday, when Summer suddenly started sleeping a lot more. She would sleep in until 10 or later on the days we didn't have treatment, would be ready for a nap earlier than usual, and would nap much longer than usual. This sleep pattern was similar to what we saw before the tumor was discovered initially.

We also felt like something was "off" with her eyes. We couldn't confidently say what it was that seemed wrong, but just that something didn't seem quite right. We brought these concerns up to Cory Hoeppner, a nurse practitioner who has administered some of Summer's Interferon treatments, and she had a couple of possibly explanations.

With treatments like this one, the tumor cells get really agitated and inflamed before they start to die off. Summer's symptoms could have been because the tumor cells were really inflamed, causing additional pressure in her brain. Or, it could be that the tumor cells had already died off, causing a rapid decrease in pressure in her brain that her body would also treat like trauma. Of course, it could also be that the tumor mass or cyst had grown.

She agreed that it would be a good idea to get an MRI to see if we could determine what was going on, in case it was something that required intervention. There happened to be an MRI cancellation on Monday afternoon, so we quickly snatched up that spot and she cautioned us to have a low threshold for deciding to go to the ER.

Fortunately, we made it through the weekend without any increase in symptoms. Monday morning rolled around and, of course, Summer woke up on her own at 6am instead of sleeping in as she had been doing for the previous week. Figures.

The MRIs were running a little late, so we had a pretty cranky kid on our hands - she wasn't able to eat after 6:45am, and didn't go under anesthesia until about 2:45. The waiting was not fun, but the MRI itself went well.

Cory came in afterward and did the Interferon injection while Summer was still sleeping off the anesthesia. Summer twitched a little as she was withdrawing the fluid, so it must bother her some - more than just having people mess with her - but not enough to wake her up.

After the injection, Cory went to watch over the radiologists shoulders as they read the MRI images and prepared their report. She came back to let us know that everything looked great. The cyst was smaller - as we would expect, since they withdrew all of the fluid before the first injection - and the tumor mass hadn't changed.

The results didn't explain Summer's symptoms, but they reassured us that everything looked okay in there. That peace of mind was completely worth the trouble of another MRI, and I'm so glad that Cory was willing to order one based on our concerns.

We have two treatments left, one tomorrow morning and the final one on Monday afternoon. We - especially Summer - can't wait to be done with it! We're going to have to do something fun to celebrate.

Sunday morning was the Run of Hope. I really enjoyed being a part of this event and seeing people who have been where we are. It's unfortunate that anyone else has ever had to go through this, but reassuring to know we're not the only ones.

We'd like to give a huge thank you to all of you who helped us raise $5,500 for the Run of Hope! In total, over $200,000 was raised for pediatric brain tumor research. Here are a few pictures from the event.

"IN HONOR OF: me!"

The wagon came in quite handy - each of the four kids took a turn at some point.

Summer walked some of the way

break time!

Thanks to Sara Thornton for this finish-line photo


Yay Team Summer!

Summer got called up on stage to draw some raffle winners. I was surprised she wasn't too shy once she got up in front of all those people!

Everyone on Team Summer - and a couple of people from her team at Children's - signed Summer's shirt

Interferon treatment update

2010-09-23T13:14:00.000-07:00

I don't really have much new to report, but thought I'd check in now that Summer has had four interferon treatments.

This Monday's appointment was challenging - it was the first time I was able to tell Summer was in pain from the procedure. Ironically, it was also the first (and only) time we tried to use the numbing cream. So much for that helping her get through it.

Luckily, the whole thing was over very quickly. She was not in pain as soon as they were done and her reaction to the injection was even more mild than it's been in the past.

Even so, I was a bit more nervous going in for the appointment yesterday because I was afraid she'd be in pain again. This time it was Dr. Geyer performing the procedure (the two before that were with Dr. Leary), and I think Summer was a little more relaxed since she knows him better, but she was still a bit crabby from being woken up early.

The procedure went very smoothly. Summer cried for less than 30 seconds after the initial needle poke, and then was quite the rest of the time, quite content to watch Sesame Street while the procedure was going on. I think it helped that Dr. Geyer didn't have an assistant come with him to help hold Summer, so she didn't have the added stress of someone she didn't know trying to help hold her still.

We met the pharmacist who is the gate-keeper for the Interferon at Childrens, and we learned the reason they don't have the fluid ready before we get there. We had assumed that it had to be used within a certain timeframe of being mixed, but actually it's because it costs more than her car. And not a 10 year old, worthless car either...a 2006 Honda Accord. That's crazy! The insurance company must really love us now... :)

The pharmacist gave us her direct number so we can call her when we're en route to the hospital, and she'll start getting it ready then so we won't have to wait at all once we get there. They just don't want to throw away that much money if we end up canceling the appointment at the last minute. I certainly don't blame them!

Photos and treatment

2010-09-17T21:04:00.000-07:00

We had a photo session with Keri Meyers Photography this morning. She did an amazing job! Summer was feeling better than yesterday, but still wasn't exactly cooperative. Keri managed to get some great shots anyway. She's so very talented! Visit the Keri Meyers Photography blog to see the sneak peek.

Also, make sure to enter the drawing for a session with Keri by making a donation to the Run of Hope page for Team Summer - rules and more details here.

Summer also had her second Interferon treatment today. It was pretty much the same deal as yesterday (including the waiting...but they're working on better timing for future sessions), except they withdrew only as much fluid as they replaced with Interferon.

Summer's doing well so far tonight, but she's starting to get a bit of a fever again. Hopefully her recovery will be as quick as the last time. We've got a busy weekend ahead, preparing for her birthday party on Sunday. Hopefully the weather forecast is wrong because the party is at the park...at least we have a shelter.

I probably won't post after each session, simply because there's nothing really new to say each time. I'll just give updates to check in every once in a while and as new information becomes available.

First Interferon treatment

2010-09-16T17:13:00.000-07:00

Yesterday was the first of 12 Interferon treatments. Summer wasn't happy about it (who would be, really?!), but overall it was pretty uneventful.

They shaved a little spot on her head over the reservoir, rubbed the area with iodine swabs to sterilize it.

Dr. Ojemann, the chief Neurosurgeon, inserted a needle into the reservoir. It had a flexible tube leading to the syringe so Summer didn't have to hold completely still the whole time, which was great. She did have to sit still in my lap, but I didn't have to hold her head firmly or anything like that. He withdrew all the fluid he could get out of the cyst - about 10mL. Then they unscrewed the fluid filled syringe from the end of the tubing and swapped it with the Interferon syringe so Dr. Geyer could push the medicine back in.

The entire process, from inserting the needle to pulling it back out, took about three or four minutes. Summer cried for the first couple of minutes, but had stopped before the end of it. I think she was mostly upset that they were messing with her and making her sit still, not so much because she was in pain. It was pretty amazing to see how much fluid they were able to draw out of there.

After the procedure, she was in a pretty good mood. I'm sure it was a relief to have the pressure in her head reduced. By about 8:00pm, she was starting to get a bit of a fever, but still seemed to be feeling okay. We gave her a little Ibuprofen to help control the fever and put her down for bed on her usual schedule. She slept through the night just fine.

I went to work today, but Jason said Summer wasn't feeling so well when she woke up this morning. She still had a fever and cried for about 40 minutes until the Ibuprofen he gave her kicked in. After that she seemed to feel much better, but took an early nap.

This afternoon, she wasn't feeling well again - just really cranky and clingy, without much appetite. She is napping again now. We were hoping for no reaction to the drugs, but these symptoms are all normal. She probably feels like she has the flu right now.

I'm hopeful that she'll feel better again tonight and tomorrow morning so she can have a little break before her next treatment at 3:00 tomorrow. I'm very excited for a photo shoot with Keri Meyers Photography in the morning - hopefully Summer will be up for it!

Starting Interferon treatment tomorrow!

2010-09-14T17:05:00.000-07:00

Yesterday, we brought Summer in to Children's for a CT scan with contrast to check whether or not fluid injected into the cyst will leak. The only appointment time available was one without anesthesia, which I was really apprehensive about since she had never before been awake during a CT scan.

Dr. Browd was scheduled to do the injection of the contrast, but was in an emergency procedure when we arrived, so a couple of resident doctors who have followed Summer's case came down to help us instead. They swabbed the area around her Ommaya reservoir with iodine, then inserted a needle and withdrew some of the fluid from the cyst, replacing it with the same amount of contrast solution. The contrast acts like a dye. It's a clear liquid, but is visible on the CT scan.

Summer wasn't happy about it, but who would be? I think she was mostly just upset that we were holding her head still and people were messing with her. She bled a tiny bit after they removed the needle, but all-in-all it was a pretty uneventful procedure. She'll have to go through the same process (except they'll inject Interferon rather than contrast) twelve more times over the next few weeks.

We had to wait for a little while for the contrast to disperse, and then they brought us in to the CT room. I had to lay Summer down on the table, with her head positioned between two padded tension paddles and held down by a padded strap to keep it still. Then they swaddled her body onto the table so she couldn't squirm around. They left one hand free so I could hold it during the scan, and gave me a flashing Mickey Mouse light to distract her with. Yeah, right!

She was NOT happy at all about being strapped down on the table while it slid back and forth through a big machine that made a loud whirring noise. Luckily, it was all over pretty quickly, and they got the scans they needed without having to do it again. I felt awful for her, but honestly she screams much more forcefully when she's getting her hair rinsed out in the bathtub at home...so it can't have been too bad. She calmed down as soon as we got her unstrapped from the table and I was holding her again.

The scans showed no leaks from the cyst, so we're set to start with the first Interferon injection tomorrow at 3pm. This one will be slightly different from the rest of the treatments because they'll withdraw as much of the fluid as they can from the cyst before injecting a small amount of the Interferon. Going forward, they'll only remove as much fluid as they will replace with Interferon so they can tell if the cyst is continuing to produce fluid on its own.

This week, Summer will have had four doctor's appointments in five days. Today was Summer's two-year checkup with our pediatrician, Dr. Anderson. We talked about a lot--vitamins, diet, development, etc.--but there's not really anything major to report. Summer weighs 22lbs 12oz (6th percentile) and is 33" long (35th percentile). She had to have one shot, and it was a breeze. I miss the days when I would agonize over taking her to the pediatrician for shots because it seemed like such a big deal...

Summer is 2 today!

2010-09-10T17:36:00.000-07:00

Summer kicked off her second birthday with an early morning MRI. Here she's sleeping off the anesthesia.

We didn't really learn anything new from it. The cyst is still refilling, which is to be expected. The catheter is still in place, and everything looks okay for us to start Interferon next week.

We talked about the feedback from Boston, and Dr. Geyer said that the tumor board here had also discussed the proximity to the optic chiasm and didn't think there was impending danger at this point. With careful monitoring, we should catch any changes in time to get to radiation before that area is put in danger.

On Monday, we'll go back in to have her head shaved over the Ommaya reservoir site. They'll sterilize the area, apply some numbing cream and use a needle to pull a little bit of the cyst fluid that has accumulated through the Ommaya. Then they'll inject the same amount of dye back into the cyst. This test will make sure the catheter is functioning as it should and will work for the treatment. She'll then have a CT scan - awake - to confirm that the cyst isn't leaking.

I'm not sure how well the CT scan will go. She's never had one unless she was already under anesthesia. They said I can hold her throughout the procedure and that it's pretty quick, but Summer has a reputation for fighting pretty much anything the doctors and nurses want to do. They may have to give her some sort of sedative to help her calm down. We'll see.

Then the plan is to start treatment on Wednesday afternoon. They'll withdraw as much of the cyst fluid as possible through the Ommaya and then inject a small amount of the Interferon into it. That will be the first of 12 treatments, which she'll have every Monday, Wednesday and Friday.

Yesterday I googled 'intracystic Interferon' (for about the millionth time over the past few weeks) and my blog came up on the first page of Google results. Hard to believe that the treatment we're about to start is so uncommonly used that my blog is one of the best hits...

Most of the information out there about Interferon is for systemic use, which is a much larger dose given intravenously, and affecting the whole body. It does have more side effects, but compared to other drugs they're pretty minimal. When given in a very small dose directly into the cyst, the only side effects we might see are flu-like symptoms: fatigue, fever, weight loss, loss of appetite and behavioral changes. These side effects will go away once the treatment is done.

We got home from the hospital at about 10am this morning and kicked off the birthday festivities:

The gifts

"CANDIES!!!"

"Happy birthday Mommy!"

It's a surprised bell!

A walk to the store

Testing out the trike

She did not want to wear a helmet!

Someone gave Summer this amazing hand-me-down gift. She was very excited! Can't wait to play with it more tonight.

Summer's birthday card made it onto sproutonline.com, but sadly not on the Birthday Show. Next year I won't miss the deadline! They only scanned the front, but here it is:

It's been a fun day, despite a visit to the hospital, and there's more fun to come! Now, I'm off to frost a birthday cake!

A quick update

2010-09-08T14:15:00.000-07:00

We heard back from Boston yesterday morning. I won't go in to great detail about what they said because it's mostly a repeat of things I've already explained. The overall verdict was that it's probably okay to try the Interferon and wait, with VERY close monitoring.

The proximity of the tumor mass to her optic chiasm (the part of the brain where the optic nerves cross) was enough to make them a bit nervous. Since the Interferon treatment won't treat the mass at all, the tumor mass will continue to grow. We have to be careful not to let it get too close to the optic chiasm where it could cause damage, or force us to include part of the optic chiasm in the field of radiation. Any damage done to that area would likely be irreversible, and the bit her vision has already suffered is enough!

They suggested staggering six-week checkups by a neuro-ophthalmologist with the six-week MRI schedule so we'd be checking in every three weeks, and would hopefully catch any significant changes early on.

We have an MRI on Friday morning (Summer's birthday!), followed by an appointment with Dr. Geyer. We'll be able to talk with him then about Boston's response (they've updated him as well) and confirm that we still want to move forward with the Interferon treatment.

I'll post again after that appointment.

Catching up

2010-09-01T12:14:00.001-07:00

Sorry for the delay in posting. I’ve been busy doing a lot of research over the past two weeks, trying to reach a decision that we can be comfortable with.

Per my last post, we have been given a decision to make – try a chemotherapy option, called Intracystic Interferon treatment, or go directly to radiation. It’s an impossible decision, with no clear winner, but we’re forced to somehow choose.

Jason had always leaned toward the Interferon option, while I have had more reservations about it. After doing a lot of research, and talking to multiple doctors across the continent, I’m leaning toward Interferon too.

There just really isn’t much on it. I found two studies, completed in 2004 and 2007, with a grand total of 30 patients treated with Intracystic Interferon. It is a drug that is used frequently to treat other cancers, just not this one and in this manner.

I also found a comparison of Bleomycin (the drug initially suggested) and Interferon, which showed that Interferon did seem to have some advantages. Mainly, there were fewer side effects if the drug were to leak out of the cyst.

The studies that have been done appear to be promising. It doesn’t work for everyone, but when it does, it buys a median of just over a year until radiation becomes necessary. Of course, it’s a very small sample size, so it’s impossible to say how much time it will buy for us, if any.

I received one report back from the Craniopharyngioma support group about the use of this drug. Although it didn’t save their son’s life from a very aggressive form of the tumor (it metastasized after two bouts of radiation), it did shrink the cyst and provide him some relief from headaches during his last few months.

I spoke with Dr. Merchant at St Jude’s about the treatment, and he was under the impression that this course of treatment had been abandoned. He referred me to a doctor in Vancouver, B.C., who had actually written the comparison article I mentioned above. Her response was that it certainly does still have a place in treatment for Craniopharyngioma, but that it’s only appropriate in select cases. Summer’s case is one of them. Most people aren’t diagnosed this young, and the risks of going straight to radiation are lower, so it’s just not an appropriate treatment step for them.

After looking into it further, I started to feel more comfortable with the treatment itself, but just wasn’t sure I wanted to take the risk of allowing the tumor mass to continue to grow. What if the tumor spouts off another cyst and we’d have to go back for another surgery? What if the tumor causes pituitary problems that wouldn’t be a direct result of the radiation, like Diabetes Insipidis?

We decided to get a second opinion from Massachusetts General Hospital, one of the places we might end up for radiation at some point anyway, to make sure they felt comfortable holding off on proton therapy for a while, assuming the Interferon treatment works. I spent a week working with Children’s to collect all of her records and send them off to Boston. The nurse practitioner we work with on the HemeOnc team, Katie, was immensely helpful with this task, and we were able to get everything to them by yesterday afternoon, in time for the cutoff to review Summer’s case today. We should hear back from them today or tomorrow.

In the meantime, we also had a few appointments at Children’s. Last Wednesday, we had an Ophthalmology appointment to check her eyesight. We were happy to find out that her visual acuity (how well she sees when she’s looking directly at something) has actually improved since her last vision appointment after the first surgery. She’s well within the normal range for her age.

Just this morning we had another VEP test (the one with the electrodes), and Summer was very cooperative for it! It showed a bit more optic damage from the cyst growth, but you certainly wouldn’t know it from watching her. She doesn’t bump into things or seem to have trouble seeing things. We do know that her peripheral vision is still damaged, as she’ll often startle as if something just jumped out at her, when it had been there the whole time. Luckily, she’s so young that she won’t ever know anything different.

We won’t know how big her visual field is or what level of contrast she can see until she’s old enough to do some more extensive testing that would require her to verbalize what she’s seeing.

Last Friday, we had a wound check with neurosurgery (everything looks great, she’s healing well!) and an appointment with Dr. Geyer to talk more about the options. After speaking with him, and going over our concerns again, we have decided to move forward with the Interferon treatment as long as Mass. General agrees that we can hold off on proton therapy for a while longer. We’ll probably start treatment in the next week or two, and we’ll monitor with MRIs every six weeks. The first will be at the end of September.

Dr. Geyer reiterated that he thinks either choice will be the right one. It’s simply a matter of weighing the risks and figuring out which ones we’re comfortable taking. Choosing to go with Interferon means that we’re willing to risk another surgery in order to give Summer’s cognitive functions a little more time to develop before radiation.

Even if we went to radiation right away – and that’s still a possibility if the Interferon doesn’t work – she would still be a pretty normal kid. She just may have a little more difficulty with some subjects in school than she would have without radiation. We would never know for sure. But, we do know that we want her to have the best chance in life possible. If that means another torturous couple of weeks from another surgery, we think it would be worth it in the long run to know that we did everything we could.

Our hospital stay

2010-08-21T15:16:00.000-07:00

I took some photos during our hospital stay in case Summer is ever curious about what she looked like after brain surgery. I didn't intend to post any online, but a few were too sweet not to share.

FAQs and more info

2010-08-20T18:26:00.000-07:00

We're home now and adjusting back to normal life. Summer was not as thrilled as we'd expected when we first got home last night. I think she was disoriented from being woken up, too close to needing more pain meds, and wanting to stay outside. But after some oxycodone and time to adjust, she was running around the living room like nothing had happened.

Today we've had a couple of visitors, and even took a walk to the park where Summer went on the swings. She had a rough morning, but was very happy as soon as we got outside.

Here I'll address some of the questions I get most frequently about treatment and this second surgery:

Q: Since the doctors already think she'll need proton therapy, why did Summer have to have another craniotomy? Why not just do the radiation instead?
A: Summer's tumor is part solid mass and part cyst. In the last three and a half months since her first surgery, the cyst grew very rapidly and was quite large. It can only be reduced surgically.

Radiation is effective in treating the mass portion of the tumor, and preventing it from producing more cysts, but it won't fix any cysts that already exist. Although the cyst didn't appear to be causing any problems for her now, it needed to be addressed surgically to prevent future problems and shrink the field of radiation that will eventually be necessary to stop the tumor from growing and refilling the cyst.

Q: Why not just remove the whole tumor? It's benign, right?
A: Yes, Summer's tumor is benign but it's considered malignant by location, since there isn't really any room to spare in the brain. It's also sticky, and very difficult to remove without damaging important structures, like the optic nerves, pituitary gland and hypothalamus.

Our doctors recommend a very conservative approach to tumor removal since radiation typically has a very high success rate for craniopharyngioma. So far, she has no pituitary damage, and we hope to minimize that damage by leaving it alone. Surgical removal of the tumor frequently causes more pituitary problems than radiation, and is more likely to affect production of some of the hormones that are most difficult to replace effectively.

Q: So what's next?
A: Jason and I have some big decisions to make in the next week. We have an appointment with the oncologist on Friday to discuss whether we'd like to move forward with the chemotherapy option, or just skip straight to radiation.

As of right now, we're leaning toward chemotherapy. There's no guarantee it will work, but the doctor doesn't think we lose anything by trying (side effects are very minor) and we might gain more time until radiation becomes necessary for Summer.

The only real downsides are: 1) it might not work, 2) it means more wait-and-seeing, and 3) it won't treat the tumor mass, so that will continue to grow (and could potentially put off more cysts).

On the plus side 1) it might work and buy time; 2) it could mean Summer experiences fewer side effects from radiation if we are able to wait, although we'll never ever know if this is true or not, and 3) the mass may grow slowly enough that it won't cause problems or increase the eventual field of radiation too much.

It's all a lot of hypothetical and we'll-never-know-for-sure stuff to deal with. Frankly, it's more than my brain can handle right now. Up until Wednesday, we thought proton therapy was the guaranteed next step and chemotherapy was never even on our radar. I honestly was a little bit relieved to give up the wait-and-see approach and DO something about this darn tumor.

We haven't yet had a good scan with Summer, which doesn't make the prospect of more waiting-and-seeing any easier for me. We did bring that concern up with the oncologist and he agreed that scans every six weeks would be beneficial, at least in the beginning, since her tumor has proven it works quickly. He also said that if it becomes apparent the treatment is not working, we can stop at any time and skip to radiation. That flexibility is good.

I have a lot more research to do before I'll be comfortable committing to the chemo option. It would be injections of Interferon, not Bleomycin as I had stated before, so I want to look into the difference. There's not a lot out there on this particular treatment used for Craniopharyngioma because most kids are old enough to just go straight to radiation and don't need to buy time. I'll dig up some studies, solicit feedback from the Craniopharyngioma support group I belong to, and also get a second opinion from Dr. Merchant at St Jude's if possible. I already have come up with more questions for Dr. Geyer (the oncologist here at Children's) since we met with him yesterday.

Now, I'm off to go on another walk with Summer!

Potential new treatment option

2010-08-19T09:16:00.000-07:00

We had a relatively eventful day yesterday, with some potentially exciting news from the doctors about a possible treatment route for Summer that would allow us to avoid radiation for a while longer.

They discussed Summer's case and reviewed her post-op scans at the tumor board meeting yesterday, and everyone was very happy with the "drastic" reduction in size of the cyst and Dr. Browd's placement of the catheter.

We met with Dr. Browd and Dr. Douglas (the radiation oncologist here) after the tumor board meeting. Dr. Douglas explained our radiation options in a little more detail.

We learned that Summer's tumor is uniquely positioned in front of her pituitary, rather than above it where most craniopharyngiomas are located. Dr. Douglas was quite surprised that she isn't showing any sign of pituitary damage so far.

We talked about conformal radiation therapy (also called standard, or IMRT), which isn't really an option in my mind because it radiates more normal tissue than proton therapy, the route we were told to start planning for now.

We also talked about something called Gamma Knife, which can be done here. It is a radiation treatment that lasts 1-5 days, with 195 beams aimed at the tumor. It's not available to children under three, but is an option we should consider if we can delay radiation a bit longer.

Just the reduction of the cyst doesn't buy us a lot of extra time. The cyst has proven that it will continually refill, and it will be quick about it. The problem with just continually draining the cyst as a way to control things for a while is that the cyst may not fill uniformly. It could section off (as it appears to already have done once) and start filling in a portion that is not reached by the catheter.

Moving directly to proton radiation should keep the cyst from continually refilling. But, it isn't ideal to do it at such a young age. Her vision shouldn't be affected by proton therapy because the reduction of the cyst has pulled it away from the optic nerves, so the field of radiation wouldn't need to include that critical structure. Also, the major language and motor control centers are far enough away that they will not be affected. Proton therapy has the ability to aim the beams to avoid these areas.

What it can affect, and likely will to some extent, is her cognitive reasoning, short-term memory and pituitary function. There are some essentially guaranteed losses from radiation - growth hormone production being one of 5 or so hormones that she is quite likely to lose the ability to produce. All of them can be replaced. Some of the more difficult hormones to control, like the one that regulates urine output, is pretty unlikely to be affected, so that bodes well for Summer's quality of life going forward.

Dr. Douglas and Dr. Browd both touched on a new treatment option that came up in tumor board. I'll give an overview of it here, but we still have a lot of questions to ask Dr. Geyer about it too.

There is a treatment called Intracystic Bleomycin therapy (ICB), which is essentially localized chemotherapy, and that they think may help us buy time for radiation. Chemotherapy is generally not effective in treating this particular type of brain tumor. In fact, even ICB wouldn't really do any damage to the tumor mass itself, but it could help control the cyst and keep it from re-filling.

They would inject Bleomycin directly into the cyst through the Ommaya reservoir and catheter they implanted on Monday. The when/frequency/dosage sort of details are all still questions I have. This should kill the tumor cells that line the cyst walls and produce the motor oil-like fluid that the tumor produces to fill the cyst.

I did some initial research online, and found that it seems to be a relatively successful treatment, with very few side effects. They would first need to test for leaks from the cyst by injecting contrast into the cyst and then performing a CT scan to check for leaks. If there are leaks present, the side-effects are much more concerning. If there aren't, the only side effect reported seems to be possible headaches at the time of injection.

Like I said, we still have TONS of questions for Dr. Geyer and I want to have him confirm the things I found online. But, this definitely sounds like something to consider.

If it doesn't work, we would just go on to radiation anyway. If it does, we have bought some time. I'm also curious to know how much time Dr. Geyer thinks it could realistically buy, given the growth in the tumor mass so far. Studies done report an average somewhere around two years. Even six months could be a compelling reason to try it.

I'll post more when I know more. We're hoping to see Dr. Geyer today, before we GO HOME! Summer has been like a broken record with that request the past couple of days. I certainly can't blame her!

Catching up

2010-08-17T21:29:00.000-07:00

Sorry for the delay on the full update, Summer had a rough afternoon, so I hadn't had the chance to get my hands on the laptop until now.

Overall, the surgery went well. Dr. Browd made me quite nervous when he pulled Jason and I into a conference room to update us after the surgery since last time we talked right in the ICU waiting area. Turns out he just thought it would be easier to talk where it was quiet since the waiting room was pretty busy. He was right, I'm sure, but it gave me a bit of a scare.

Everything went pretty much as planned. They went in through the same incision, although they left a bit more hair behind this time. Her skull had healed almost completely shut, so they had to open that back up again.

They did encounter quite a bit of scar tissue during the procedure, including the dura mater being stuck down on her brain after the last surgery. This puts her at risk for seizures, but Dr. Browd thought it was quite unlikely she'd have any. Just to be safe, Summer will be on seizure meds for the next three months to give her brain a chance to heal before we wean her off them. We won't know until then whether the surgery has caused her to have seizure problems or not.

They think the cyst was actually two globular cysts, one inside another, and the catheter that is in there now goes through the membranes into both cysts, so it should work for draining any fluid that these cysts put off in the future.

She had to get a little blood during the surgery, and was pumped full of IV liquids, and she's still a little puffy from all of that, even 24 hours later.

Jason and I were both amazed by how good she looked the night of her surgery, and into this morning. The immediate swelling was minimal compared to last time. Or maybe we just knew what to expect so it didn't seem as bad.

She was talkative at various points through the night and seemed generally happy. The morphine made her comfortable enough to sleep well on her own. She really liked the nurse we had last night. I woke up a few times to see them chatting away and not needing me at all. Summer is generally not a fan of nurses, so that was pretty surprising!

Over the course of the day, she has puffed up quite a bit more (as is normal), but her eye did not swell completely shut like it did last time. She has been rubbing at her eyes and nose, which doesn't help the swelling. They gave her some Benadryl a little while ago and that seems to have helped.

I am not sure where the Ommaya reservoir is located on her head. We can't see it due to the current post-op swelling, but I'll ask the neurosurgeon in the morning if he's in the group of doctors that come to check on her.

She's been a bit uncomfortable this afternoon - the oxycodone/tylenol combo is not quite enough to keep her comfortable, and they won't allow ibuprofen until tomorrow. We'll probably get her some morphine to help her sleep through the night.

She's been understandably cranky, but we're glad to be out of the ICU so quickly. Hopefully we'll really be home in 3-4 days this time. They did say the recovery might be a little longer this time around, so I'm not sure. I'll have to ask in the morning.

I'm sure I forgot a million things, but I'll post again tomorrow.

We've moved!

2010-08-17T15:00:00.001-07:00

We are now in Giraffe-3009. I haven't been able to sit with the laptop yet, so sorry for the lack of update!

Summer's doing well, just napping a lot. Her tummy is giving her a little trouble from all the meds, but otherwise she's doing well.

A good night

2010-08-17T07:56:00.001-07:00

Summer had a good night, is showing no signs of complications yet and got some sleep.

I haven't been able to hold her yet, but she's content in her crib for now anyway.

She woke up a few times in the night and was chatting away, so that's a good sign. She really liked the nurse we had overnight, so she'll be sad when she wakes up and sees that she went home.

Neurosurgery came by and told us we will be moving to the floor today, assuming they have a bed available. I'll post a room number when we do, and more about the surgery when Jason comes back with the laptop so I don't have to type it all out on my phone.

She's done!

2010-08-16T20:18:00.001-07:00

Dr Browd said everything went well. Haven't seen her yet, but soon! I'll post more in the am.

Wrapping up

2010-08-16T18:40:00.001-07:00

They've finished draining the cyst and will begin finishing up now. She should be done in 45 minutes to an hour, at just about the three hour mark.

They'll call us down to the ICU waiting room to talk with Dr Browd about how the surgery went, while Summer's getting her post-op CT. Then we'll be able to go see her!

Also, I got an email from Dr Merchant at St Jude today. His protocol won't be ready for several more months, and it wouldn't be smart to wait for it. So Jacksonville is out. Boston or Houston here we come!

Surgery started 10 minutes ago

2010-08-16T16:35:00.001-07:00

Just got an update from the OR. They started about ten minutes ago and Summer's doing great! They'll call with another update in a couple of hours.

They just took her back

2010-08-16T15:30:00.001-07:00

About 20 minutes ago they took Summer back for a pre-op CT scan. They put her under with the strawberry-scented gas again and will take her straight to surgery when that's done.

All said and done, should be about five hours; 3-4 for the surgery plus pre- and post-op CTs, travel time, etc.

I'll post more updates throughout the surgery. They will try to page us with updates every two hours or so.

They'll take her back around 2

2010-08-16T12:52:00.001-07:00

The OR is still in use, so the surgery will start around 2, instead of 1:15.

Big day tomorrow!

2010-08-15T20:42:00.001-07:00

Tomorrow's the big surgery day! We will be checking in at noon, with the surgery scheduled to start at 1:15pm. We've been told it will take 3-4 hours.

Last time they called us a few times to provide updates during the surgery. I'm testing a new blogging app on my phone right now, so assuming this works I'll provide quick updates as news comes in.

I have a lot of packing, organizing and cleaning to do tonight, so thankfully the worst of my sinus infection has passed and I feel up to it. I would leave the cleaning for later, but the shower has to be cleaned before Summer's special antibacterial bath in the morning.

We'll be getting up before 5am for some milk and toast, and hopefully she'll go back to sleep after so I can too!

We love to have visitors help pass the time away during our hospital stay, but here are a couple of things to know:

In the ICU, only three people total (including Jason and/or me) can be with Summer at a time, but visiting gets a lot easier and more relaxed once we move to the floor. I'll post our room number once we do.

We can't have flowers or balloons in the ICU, but they will be allowed after we move.

Meals can't be brought into the ICU, except the ones provided by the hospital. If you'd like to bring snacks after we move, please remember that Summer is on a gluten-free diet.

Also, we won't be able to answer our phones, receive text messages or check voicemail in the ICU, but we will have access to email.

Thanks everyone for your thoughts and prayers! Let's hope this one goes as well as the last, with a quick recovery and no side-effects.

More surgery details

2010-08-12T16:53:00.000-07:00

We spent a couple of hours in the Children's waiting room, trying to get squeezed in to Dr. Browd's schedule. He had a packed day already and wasn't able to see us until noon, at the end of his clinic hours. We looked at Summer's MRIs again and talked about the surgery.

Again he mentioned his surprise that her vision hadn't yet been affected. We looked at the scans from the side-view, which showed the cyst is definitely not a deflated balloon - it's a full, round cyst. The only possible explanation is that it's pushing more out to the side this time, so the change in direction might be sparing her optic nerves at this point.

This surgery will not be quite as easy as we had hoped. It will be quite similar to her first one. She'll get another awesome haircut, they'll use the same incision and go in through the same pathway.

He said it might be a little more difficult getting down to the tumor, since there will be some scar tissue to go through, but he won't be going as deeply in to her brain this time. He'll go only as far as he needs to in order to reach the cyst, puncture it and insert a catheter to drain it. He'll leave the catheter in the cyst and attach it to a reservoir which will stay under the skin on the side of her head permanently to allow for draining at any time.

The goal of radiation is to completely treat the tumor mass and, in theory, stop it from producing the fluid that fills the cyst. But if the cyst does ever fill up again, whether it's right after radiation or decades in the future, the permanent reservoir will allow us to drain the fluid without requiring another surgery.

The surgery is set for Monday, probably sometime around 12:30/1pm, but they'll confirm the time with us tomorrow. We have a pre-op anesthesia appointment at 1pm tomorrow, followed by a full physical at 2:30pm.

Between yesterday, today and tomorrow, we'll have spent about 12 hours at Children's. They're doing a great job of ramping us up for another stay!

Dr. Browd said we'll likely be there 3-4 days this time. From what I recall, that's what they said last time too, so we'll be planning for a full week. At least this time we have a few days to plan, get organized and pack for it.

Now, Summer and I are off to Target to stock up on supplies - extra binkies, a Wiggles DVD. You know, the necessities.

More from the tumor board

2010-08-11T18:51:00.000-07:00

Since the tumor board met this afternoon, I've spoken with Dr. Geyer, Summer's oncologist, and Dr. Browd, her neurosurgeon.

Here's what we know:

Summer will be having surgery to drain the cyst, probably early next week. They'll install a shunt that will connect to a reservoir between her skull and her skin, and the fluid will collect there instead of in the middle of her brain, to allow for easy drainage as needed. It makes me nervous to have something like that in her head, but as my mom pointed out, at least we'll be able to tell when it's filling up.

We'll be meeting with Dr. Browd sometime in the early part of tomorrow to talk with him face-to-face about the surgery and to schedule a date. I'm going to push for Friday if at all possible, but it sounds like it will be sometime early next week unless things change drastically. She'll have an overnight stay in the PICU followed by another 2-3 days on the floor, for a total of 3-4 days in the hospital. A little better than last time, but not by much! At least this time we will be able to plan for it and pack accordingly.

They also reviewed her scans more closely and found that the tumor mass has grown. The cyst and fluid expansion accounts for most of the growth, but the mass itself has grown a little too. They feel that the risks for long-term side effects from radiation at this young age no longer outweigh the risks of the 'wait-and-see' approach, and are recommending that we start planning for proton therapy radiation now.

Planning can take anywhere from one to two months, and we'd be sent to either MD Anderson in Houston or Massachusetts General in Boston, depending on which one could get us in first.

I've emailed Dr. Merchant at St Jude again to let him know of this development and to see if there is any chance his protocol would be ready in or near that timeframe so we could still participate. In the event that it's possible to work with Dr. Merchant instead, we would be going to the University of Florida Proton Institute in Jacksonville. When I spoke to him a little over a month ago, it wasn't to be ready for 3-4 months, so I'm keeping my fingers crossed that things went more quickly than expected!

I'll post again after our appointment with Dr. Browd tomorrow.

MRI results

2010-08-11T13:28:00.000-07:00

The MRI itself went well. Summer had to get a finger poke in the morning for endocrine labs, which is never fun, but that was the only time she really got upset today. They made her sleeping gas strawberry scented, which she seemed to enjoy - she was still talking about it when she woke up after the MRI.

The results of the MRI, however, are mixed. The good news is that the mass portion of the cyst doesn't seem to have grown much, if at all. The bad news is that the cyst has grown significantly. It looks to be about three times bigger than it was before her surgery, when she was practically blind. We're not sure how it could possibly not be affecting her vision now, but somehow it doesn't seem to be.

Jason noticed that the cyst seems to be thinner than before, more like a deflated balloon, so perhaps it's not putting as much pressure on the brain and optic nerves, even though it's spread out and touching more of the surrounding tissue than before.

The tumor board at Seattle Children's Hospital meets Wednesday afternoons, so thankfully we won't have to wait long to find out more. They'll talk about her then with all the relevant doctors (oncologists, neurosurgeons, radiologists, endocrinologists, etc) and get back to us later today, probably sometime after 2:30 or 3pm.

It sounds like they will recommend surgery in the next couple of days to drain the cyst, and possibly to install a shunt with a reservoir that will collect the fluid and make it easier to drain as needed in the future. We are under the impression that this will be a less invasive procedure than before, but the neurosurgeon will tell us more once they decide on the best course of action.

Dr. Geyer, her oncologist, also mentioned the possibility of a more aggressive surgery to remove more of the cyst wall and the tumor. I shared with him the advice I received from Dr. Merchant, Chief Radiation Oncologist at St Jude's, which is to avoid such a surgery because it has a much higher risk of affecting her quality of life, and didn't necessarily provide more benefit than radiation without the more aggressive surgery. Dr. Geyer agreed.

We also talked with Dr. Geyer about the protocol Dr. Merchant is developing for proton therapy on children under the age of three, and the possibility of us participating in that group. He felt that there probably (he hasn't reviewed the protocol since it's not out yet) isn't a difference in the radiation treatment itself, or a very minor difference, but that there definitely is benefit in the more intensive monitoring that likely comes with the study, and that they could learn from Summer (since she's in a very small minority of children diagnosed with this type of brain tumor so young). It would be great to know that they can use what they learn from her to help other kids in the future.

Dr. Geyer did mention that it might be prudent to move forward with radiation now, but that we have time to think about it since the mass itself doesn't seem to have changed much. Regardless, the cyst needs to be drained now. He didn't give a definite recommendation on the radiation front, and said again that they'd talk it over at the tumor board.

I emailed Dr. Merchant all of this info just a few minutes ago, so we'll see what he has to say as well. I'll post again after we hear back from the tumor board this afternoon.

3 months post-op!

2010-07-29T08:15:00.000-07:00

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.

Our funny child

2010-07-01T09:21:00.000-07:00

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:

'Bankley,' her favorite blanket which has been 'blanky' until recently
'Meece' for Miso - or Sophie, for that matter. She often calls them both 'Meece'

Ready for a pedicure?
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!

Lab results

2010-06-28T11:42:00.000-07:00

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.

Labs and a visit with the Oncologist

2010-06-23T21:33:00.001-07:00

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!

A fun Father's Day at the cabin

2010-06-21T10:22:00.000-07:00

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.

Team Summer - please join us!

2010-06-17T12:42:00.000-07:00

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

Sometimes uneventful is great!

2010-06-14T23:10:00.000-07:00

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! :)

Visual Evoked Potential test

2010-05-24T14:21:00.000-07:00

Summer had an appointment with Ophthalmology for a Visual Evoked Potential (VEP) test on the 12th. I didn't post right away because Jason and I were a little confused about the results, but I talked to the ophthalmology technician this morning and got some clarification.

The purpose of this test was to find out what level of damage, if any, she had to her optic nerves as a result of the brain tumor. The results will provide a baseline for her brain's response to visual stimuli, now that most of the swelling in her brain is gone. She'll have this test every 3-6 months (probably closer to 6), and they'll compare future results back to the one from today in an attempt to detect any problems early.

For the test, the doctor glued electrodes all around her head (which she did NOT like) and then sat Summer and I down in front of a TV screen. He played 30-second segments of flashing black and white patterns - one segment had black and white lines, another had a checkerboard pattern, etc. - and dangled a small figurine in front of the TV. As the segment played, he sang a song and jerked the figurine up and down in front of the screen. Meanwhile, the electrodes measured her brain activity in response to the changes in pattern on the TV and the motion of the figurine.

Summer did way better than Jason or I expected her to with this test since it required her to sit still and focus on the screen without distraction. That's not a problem for her when Caillou is on, but a flashing checkerboard is not quite so interesting.

She made it through several of the brief segments, so the doctor decided to try and push his luck to get one or two more in, but Summer was done at that point. They got enough information from the ones she did sit through to give us a better idea of what her vision is like.

She can see, and her visual clarity is in the normal range - we already knew this. This means that things look just as clear or fuzzy to her as they should for any 20 month old kid.

That said, there was some damage to her optic nerve. The optic nerve is pretty inflexible and damage isn't usually reversible. We are incredibly lucky that it wasn't worse, especially when you consider that three weeks earlier she wasn't really able to see at all.

When it came to the smaller checkerboard patterns, her brain wasn't reacting the same way it had for the larger checkerboard patterns. This, combined with a normal visual clarity rating tells us that Summer can't see contrast as well as the rest of us. We won't know exactly what level of contrast she can see until she is old enough to tell us.

It could mean that she'll only have difficulty telling the difference between two very similar shades of the same color, or it could mean that she won't be able to recognize bigger differences in shades - like between red and orange. Until she can tell us there's a difference between two colors, we won't know.

The reduced ability to see contrast may make it a little harder when she's learning to read. This is where Jason and I were confused - black letters on white paper seems like pretty significant contrast to us. Well, it is - but small fonts make it harder to see the contrast and identify the shape of the letters. Also, a lot of children's books have text written over image backgrounds, rather than on a white background.

We can help her by getting books with large fonts on white paper (think the 'I Can Read' style), and by paying attention to lighting when we're reading to her or teaching her to read. She might outgrow those needs once she has learned to read, or she may need the large-print books for the rest of her life.We'll just have to wait and see.

At first, Jason and I weren't sure how to feel about these results. Everything had been so positive so far, that it has been easy to forget where we were three and a half weeks ago. Even this tiny bit of slightly negative news made us feel sad for her. But then we remembered. Three and a half weeks ago, Summer was essentially blind. Now, she can point out planes in the sky again and spot a flower to smell from across the street. We just have to keep reminding ourselves how lucky we are!

What we learned today

2010-05-12T23:18:00.000-07:00

The short story: Summer is healing well and it is more likely than not that she will have to go through radiation sometime in the next few years. Nothing really new to report, just a lot more detail about the things we already knew.

Here are the details:
Today we met with the neurosurgery nurse, Mandy, who has been working with us since Summer's surgery. She checked out Summer's incision site and said everything looks like it's healing really well. She was a little concerned about the amount of swelling that was still there, but Jason and I could tell that it had gone down significantly over the past two days. Just since that appointment this morning it has gone down quite a bit more. At this rate, I wouldn't be surprised if the swelling is gone entirely by the morning.

As far as recovery from the surgery goes, Summer can't swim or go to her gym class for 2-3 months post surgery. We're supposed to keep her in "feet on the ground" activities until then. Not sure how well we will succeed at that - she is entirely back to her normal self and (high!) activity level at this point.

They're not too worried about her bumping her head because the skull that was removed is tightly stitched in place with string. Obviously it's not ideal that she bump her head, but there's no helmet necessary, which is good since I doubt we'd be able to keep one on her!

Speaking of stitching...we finally asked how many stitches Summer has. The nurse said that she has two more layers with about the same number of stitches we see on her head - so that's approximately 174 stitches. I think that buys her some bragging rights. :)

After the neurosurgery check-up, we met with Dr. Geyer, a Pediatric Oncologist. So far, we've been dealing primarily with the neurosurgery team and had only been introduced to one oncologist and the HemeOnc nurse. From here on, they'll be our primary contacts and the ones we work most closely with on Summer's care. Today's meeting was our chance to formally meet with the doctor and ask any questions we had come up with so far.

We went over the pre- and post-op MRI scans, and got to see that the tumor is now just a little bigger than half its pre-op size. Prior to the surgery, it was about the size of those big gumballs you see in the quarter machines at the grocery store. Now it's about half an inch at its widest point. It is still bigger than Jason and I both imagined it would be post-op, but it is definitely a sizeable difference.

Dr. Geyer talked to us a little more about how the tumor board discussion went last week. Apparently they had a pretty long conversation about Summer because the path we're taking with her care is a little different than standard treatment for craniopharyngioma. It is very rare for a child under the age of 2 to be diagnosed with this type of tumor. Most are between 5 and 14 years old, and can therefore begin radiation right after the surgery. Because Summer's so young we're taking the wait-and-see approach. As I've mentioned before, we're hoping to postpone radiation for a while, thereby reducing the long-term side effects it might cause.

There is a small chance that the tumor could be done growing. All cells (with the exception of malignant ones) are programmed to multiply until a certain point, and then they stop. It could be that the stopping point for these tumor cells has been reached or will be reached very soon. Unfortunately, there's no way to know.

From here, we'll monitor the tumor with MRIs every three months. We'll also have her vision and hormone levels tested every 3-6 months as an additional indicator of changes in the tumor. Jason and I will also be on constant watch for the same sorts of changes we now know were caused by the tumor - sudden fears developing (sign of vision changes), increased urination, etc. We've been told to have a low threshold for calling the oncology team so we can catch any changes quickly.

If the cyst portion of the tumor continues to grow, we may choose to deal with that and continually reduce the pressure it causes to avoid any damage to the optic nerves and pituitary gland. There are a number of ways they could do this - further surgery, inserting a tube into the cyst that would grant access from outside Summer's head whenever they need to drain the cyst, or the injection of something into the cyst that would stop it from re-filling. Any of these options would buy us more time until we need to do radiation.

If the tumor tissue itself continues to grow at a pace that concerns the doctors, we may do another surgery and/or begin radiation treatment sooner rather than later. There are a couple of different types of radiation that can be done, but the one they recommend for kids Summer's age is called proton beam radiation and is only available in a handful of places. We'd likely go to MD Anderson in Texas or Massachusetts General in Boston for the entire 6 week process. Children's has a close relationship with both centers.

The way the radiation works is that it aims a number of radiation rays (anywhere from 5-100) at the tumor from various angles. Each beam is a fraction of a dose (1/5 to 1/100, depending on the number of rays). They converge at the site of the tumor, so the tumor gets a full dose, but the surrounding tissue where the radiation enters the head only gets a small portion. The doses last about a minute a day, 5 days a week for 6 weeks.

The radiation technology available here, at UW Medical Center, creates rays that pass all the way through the head, so the normal brain tissue between the entry point and the tumor, as well as the tumor and the exit point, is subject to radiation. Proton beam radiation goes to the tumor and then stops, so less radiation that gets delivered to normal brain cells.

So there's a lot of information about something we don't even know if or when we'll have to do. There is no magic age that suddenly makes radiation less risky, but it sounds like if Summer were three years old they would recommend we start radiation now.

I'll continue to post here on the blog as we find out any more information. We have a vision appointment in two weeks or so, then endocrinology tests in 4-6 weeks. Summer is doing so well now, there's really nothing more to report! Tomorrow, it's back to work for me!

Best Mother's Day yet!

2010-05-09T23:12:00.000-07:00

I am so happy to be home with my family. Summer is really healing quickly, and has kept us laughing non-stop since we've been home. We think she must have been getting headaches (from bad vision, or from the tumor itself) for quite a while. I never would have called her a cranky kid, but she has been SO happy all the time since we've been home.

She even went a full day without a nap yesterday, and didn't have any meltdowns at all! That's unheard of!

We thought we were going to have a number of bad habits to break her from once we got home - bottles of milk all day long, sleeping in bed with Mommy, and a binky 24-7 - but she has transitioned home really well.

I have no medical news to report at this point, but thought you all might like to see some pictures of Summer now that she's home.

Summer helping Rocky use the phone...

C'mon Papa, I know the doctors said no horsing around...but one ride won't hurt!

Pretending she's a pirate - can you hear her saying 'arrrgh' ?

Jumping!

"so big!"

Happy Mother's Day!

This is her pirate beard.

Bothell Landing on Mother's Day:

Summer wanted to climb the tree

Best Mother's Day gift ever - Summer loving the swings again! You've all probably seen her (or video of her) cackling while on the swings. She used to love them! About a month ago, she developed a fear of the swings and wouldn't go on them anymore. Now, we think it's because her vision was getting bad from the tumor. Today, she was having so much fun - giggling away on the swings again!

Summer always has time to stop and smell the flowers - and to make everyone with her smell them too.

mmm...brownies - thanks Casie!

We hope everyone had as wonderful a Mother's Day as I did!

There's no place like home!

2010-05-06T18:49:00.000-07:00

We got home around 1 today, and it is so nice to be back! Summer was so happy to see her animals, and they were happy to see her too.

She is definitely a much happier kid at home than at the hospital. She's been running all over the house, flying her babies around and playing with her toys. She's still a bit clingier than usual, but so much better than she was at the hospital.

She finished her steroids yesterday, so she just came home on pain meds. We're working to ease her off the oxycodone quickly because it's causing some major tummy problems for her. Hopefully she'll be only taking Tylenol soon.

We didn't end up meeting with the oncologist this morning before we left the hospital, but we'll see them during the follow-up appointments scheduled for the next week. Tomorrow, her blood hormone levels will be retested to verify that the one low level has gone back up now that she's done with steroids. Then next Wednesday, we'll see the neurosurgeons to check the surgery wound, and we'll meet with the HemeOnc (Hematology & Oncology) group then too.

Jason's back at work now. We're going to see how the transition home goes over the next couple of days, but I'll probably go back sometime next week. We've been through a lot, so we want to make sure both Summer and I are ready for me to be at work all day.

The tumor board results

2010-05-05T15:09:00.000-07:00

Dr. Browd and the neurosurgery team just came in and gave us the overview from the tumor board meeting. Summer's tumor is a craniopharyngioma, as they thought. It's a very slow-growing cancer, and the risks for waiting and watching are smaller than the risks for putting Summer through radiation therapy at this age. Because she's so young, there could be irreversible damage to her cognitive and hormone functions from radiation.

The plan for right now is to just watch it. We'll have a few follow-up appointments to check her recovery from the surgery, and an MRI in three months to evaluate the growth rate of the tumor. There will likely be radiation at some stage, but they're hoping to wait until she's older.

If the growth rate of the tumor indicates that we do need to act sooner, there are treatment facilities we can go to in Texas and Boston which specialize in radiation therapy for young children.

We'll be meeting with the oncologist tomorrow to find out more about what the future holds, and then we'll head home to try and resume 'normal' life!

Today's the day

2010-05-05T13:31:00.000-07:00

The tumor board is meeting right now, and we expect to hear back from them sometime after 2:30. I'll put up a quick post with high-level results as soon as we know something, and I'll elaborate later.

In the meantime, since Jason's napping with Summer, I've been doing some research. If we go with the assumption that the tumor is craniopharyngioma, everything I've been reading seems pretty encouraging. Here's an article from the Cancer Center at Johns Hopkins: http://www.childhoodbraintumor.org/Craniopharyngiomav1.pdf

Walking again!

2010-05-04T21:55:00.000-07:00

The biggest news of the day is that Summer is back on her feet. She started out a little shaky and is still a tiny bit wobbly, but was walking really well today. We spent some time in the playroom and outdoor park here at the hospital.

She makes me EXTREMELY nervous because I can't bear the thought of her falling and bonking her head while it's in its current state. I'm convinced that they'll be treating both Jason and I for heart attacks before we leave this place. Me for paranoid attacks while Summer is moving around on her own, and Jason for the clogging his arteries must have experienced this last week after all the brownies and fried hospital food.

We met a number of new people today - from endocrinologists to physical therapists and a social worker. We learned that Summer's hormone functions look good (one is low since she's on steroids and will be re-tested later), and that we'll have physical therapy options available if she doesn't recover all of her motor functions on her own right away. I'm guessing, by the fact that she was running on her tip toes this afternoon, that we won't have much of an issue there.

The social worker is here to help all tumor patients and their families deal with what's going on and provide support in a number of ways. She'll follow up with us frequently and even makes house calls to meet with us during Summer's treatment and recovery.

The plan is still to find out more after the tumor board meets tomorrow afternoon, and it sounds like we'll be heading home on Thursday. I know Summer can't wait for that!

We continue to have loads of love and support from family and friends, which we really appreciate. The days go by so quickly here, and the visits we get are a big part of that.

Vision is 'normal' - YAY!!!

2010-05-03T22:13:00.000-07:00

Summer saw the ophthalmologist today and we found out her vision is 20/63 - well within the normal range for a 19-month-old! 20/20 is far above the normal range for that age; 20/63 is in the upper third of the range identified as normal. They tested her while she had both eyes open, and will test each eye individually in a couple of months when we come back for a follow-up visit. Her eyesight may continue to improve between now and then, as her brain has a chance to recover from the surgery.

Nothing else new to report, really - her catheter is out, so she's not tied down at all. We went for a lot of walks around the hospital today to take advantage of that freedom. She's not too interested in walking herself just yet, but the remaining IV site is in her foot, so maybe that's not very comfortable for her.

She did stand up on her own for a little while in the hospital playroom to explore the train table. She was a bit unsteady on her feet at first - probably a combination of the drugs and the fact that she hasn't really used her legs for anything other than kicking away nurses in almost a week - but she managed.

We've had some fantastic nurses today. They've been super helpful and very considerate of Summer's stress-level. Not that the others haven't, but these ones have been especially great. I wish we could keep them until we leave.

Speaking of leaving, the doctors haven't given us an anticipated discharge date yet, but said in passing that hopefully tomorrow morning they'll begin taking steps to get us out of here. They've also hinted that we may be home before the tumor board meets, in which case we'll have to come back to find out what they have to say.

Can't wait to get Summer home where she can lay on our own couch with her Bubba.

Monday AM

2010-05-03T09:44:00.000-07:00

The steroids are making her pretty darn irritable, and she has a bit of 'roid rage when she's upset. It's especially stressful since she still has various things attached to her that she could yank out while she's angry. We weren't able to get her down to bed in her crib last night, so they allowed us (after signing all the appropriate consent forms, of course) to trade the crib for a hospital bed so I could sleep with her. There was no other way Jason or I would have gotten any sleep last night.

Thank goodness they're going to start weaning her off the steroids soon! They're waiting until her labs are done this morning, and then they'll start reducing the dosage once she's clear.

The neurosurgery team came in to see us pretty early this morning and gave the order to remove her catheter. It's really quite a bulky thing and the only tube still tying her down all day (the rest are only hooked up from time-to-time or at night), so she'll be able to walk and move around a lot easier once it's out.

The other great thing about the catheter removal is that it's a sign of the doctor's deciding she has not developed Diabetes Insipidus (DI) - a condition caused by damage to the pituitary gland, where the hormone telling your kidneys how concentrated or dilute to make your urine isn't produced, causing you to pee a lot, all the time, regardless of how much you're drinking. It's easily controllable with meds, so it was never one of our biggest concerns, but now it's one less thing to worry about.

We will probably be meeting with ophthalmology today, if they can get Summer in, so we should have a better idea of where her vision is later today.

For those of you who aren't on facebook, I hope the link below works. I posted a video of Summer in one of her happy, playful times yesterday. The swelling has gone down even more since then.

http://www.facebook.com/video/video.php?v=1430684896117&ref=mf

Out of the ICU!

2010-05-02T18:10:00.000-07:00

We've been moved out of the ICU to a private room - Giraffe 3025. We are still unable to use cell phones here, but have wireless access as before.

I jinxed myself by writing about how uncomfortable the recliner was in yesterday's post. Summer had a rough night and didn't want to be put down in her crib at all, so we spent the entire night in that recliner. Definitely didn't get much sleep at all.

She's continued to be pretty uncomfortable today, now that all the anesthesia and morphine have completely worked their way out of her system. We'd been trying to keep her comfortable with Tylenol, since that worked yesterday, but it has not been enough today and we've been giving her oxycodone too. When that's working for her, she is a pretty happy kid.

We loved our ICU nurses, but we're happy to be in a private room without Summer having to be tested nearly as often before. Now we can also use the bathroom and shower in our own room, rather than having to go out to the waiting room for the bathroom or upstairs for the shower. Both of us can now stay in the room overnight, so hopefully I'll be able to get more sleep with Jason here to help out. We can also have more than one or two visitors at a time, and can eat meals in our room. Little things, but they'll make the next few days easier.

Summer will probably have a CT scan tomorrow to check that she's reabsorbing the spinal fluid released when they opened the cyst. If she's not doing it on her own, they'll release the fluid with a valve. Not much else to report just yet. Still planning to meet with the ophthalmologist in the next few days and hear back from the tumor board Wednesday night or Thursday.

A good Saturday

2010-05-01T20:35:00.000-07:00

Note: I lied - we can't get voicemail in the ICU. I checked my phone when I got out of the room for a few minutes, and it kept dinging over and over with all the text messages and voicemails. I loved reading and hearing from everyone, but I won't reply to all of them because I'd much rather be in the room with Summer, and I can't use my phone there.

Summer was back to her old self for parts of the day today - playing peek-a-boo, how big is Summer? and tickling us with her cute little fake laugh. She got to watch a bit of Caillou today on the laptop, so she was very happy about that.

She asked for Jason to hold her several times, so I was up out of the recliner a bit more than yesterday. It is not a comfortable chair, so that is a very good thing! We had a steady stream of visitors today, which made the day go by really fast. Some got to see her completely alert and sitting up, while others only got to watch her sleep on Jason or I.

She was a little grumpy from time to time, understandably, but did well with Tylenol for most of the day and Oxycodone toward the end. The swelling seems to have reached its peak today and is now on its way down, but she's still quite puffy and can't open her right eye.

We had a little incident with the IV this morning where it slipped from her vein and her forearm/hand were flooded with the IV solution. It's not a big deal, especially since she had another live IV site they could use instead, but she had to deal with a puffy arm and hand for most of the day. It's mostly back to normal as I'm typing this.

She's had two IVs and an arterial line removed, so she's down to one IV site which is only being used every 6 hours for administering steroids, EKG monitors on her back, a Foley catheter and a toe monitor. It's nice to have fewer wires for her to get tangled up in.

The doctors are still really happy with her progress, and don't see anything wrong with her urine output or sodium levels. They said on Friday that we'd be moving today, but they figured they'd just keep her here and continue to watch her since the ICU is pretty empty. We will be staying in the ICU again tonight, but should be moving to a regular room tomorrow.

Friday

2010-04-30T19:56:00.000-07:00

Summer has been doing really well all day. She's on steroids to control swelling, and those make her a little cranky, but even so she's been a pretty happy kid considering recent events. She's got her appetite back and has been asking for nuggets, apples, and brownies (thanks Nicole!) among other things. She's slept on me for most of the day, so I'm hoping she'll continue to sleep through the night and let me sleep a bit too.

The doctors are all really happy with how she's progressing. They've been watching her urine output and blood sodium levels as two indicators of a pituitary gland that's not functioning properly. So far, they haven't seen anything wrong, but they're continuing to monitor those things closely. They've also ordered some blood hormone tests to see if she is deficient in any of the many other hormones the pituitary gland is responsible for.

They did a follow-up MRI early this morning to get after-surgery images of her brain, and they also verified that the rest of her spinal column is clear. Of course, that means they had to sedate her again, which makes three times in less than 24 hours. Poor kid!

The doctors haven't confirmed it, and she won't be seen again by the ophthalmologist until next week, but all of the family members who have seen her awake are convinced that she can see and focus on people and things. She's been able to grab things out of our hands and can tell it's me when I walk in the room, which she definitely could not have done yesterday. We're not sure how fuzzy her vision is, but we're pretty darn sure it's better than it was yesterday.

Today we've seen the original neurologists we met with on Wednesday and Thursday morning, the neurosurgery team who operated on her last night, and several of the ICU doctors and nurses. Her regular pediatrician came out to check on her too, which I really appreciated.

They are keeping us in the ICU overnight, but plan to move us out to a normal room in the morning. She's on a few different medications for various things, but she has only been needing Tylenol for pain since this morning, which is a good sign.

Most people say she looks better than they would expect, but she still looks pretty miserable. Her right eye is purple and swollen completely shut. She's missing about 1/3 of her hair (which they saved for us - her first hair cut!) and has about a 12" incision (length estimate provided by Uncle Bill since I'm terrible at guessing dimensions), starting right in front of her ear and curving up behind her hairline. It ends just a bit left of her widow's peak. We're going to count the stitches so she'll have a number to brag about when she gets to elementary school. :)

I totally botched the spelling of the cancer they think it might be in a previous post. It's actually called Craniopharyngioma. Again, they don't have the biopsy results back, so they don't know for sure that this is what it is. That particular type of tumor is usually benign, BUT since it grows in the brain where there isn't much room to spare, they usually will follow up with a second form of treatment (surgery being the first) to keep it from growing again.We'll know more on Wednesday or Thursday after the tumor board meets and gives us an update.

Again, a huge thank you to everyone for your emails, facebook messages, phone calls and visits. We appreciate it so much!

The morning after surgery

2010-04-30T08:10:00.000-07:00

NOTE: We cannot use our cell phones in the ICU. We can still connect to wireless, so we will be able to check voicemail and email if you need to get a hold of us.

The surgery went well. I should say, it went as expected. They were not able to remove all of the tumor because it wall of the cyst is involved with the optic nerve, carotid artery and pituitary gland. They always err on the side of caution around those areas, so they left quite a bit of the tumor tissue behind, rather than try to remove it and potentially cause more serious damage.

We really have to give a HUGE thank you to everyone for their support. We literally had a crowd of family here with us the entire time we were waiting, and it would have been so much harder for us to get through those 5 hours or so without everyone there. So THANK YOU.

Jason and I really like her team of surgeons - Dr. Browd is the main one we've been talking to, but we've met and spoken with a few others several times. They are all extremely helpful and you can tell they genuinely care about helping Summer get better. The nurses have been fantastic too. We really couldn't be in better hands.

She finished up around 11:30 last night and woke up right away. She was sitting up right away and talking, asking for us as soon as they removed her breathing tube. The doctors and nurses were pretty surprised at how quickly she bounced back from the anesthesia. The nurse said that a doctor commented on it and she just shrugged and told him "this girl does what she wants!" Everyone who knows her will tell you that's true. :)

We were able to see and hold her shortly after she woke up, and could already tell she still has all of her spitfire personality intact. They told us what the incision would look like and reminded us that her head would be partly shaved, but it was a bit of a shock to see the side of her face so swollen from where they removed and replaced the bone. The swelling will probably get worse before it gets better, and she does look like there will be some bruising. Her right eye might even swell shut, but that's entirely normal.

She's still wrestling with the nurses every time they try to take her vitals or mess with her IV. She's been kept pretty comfortable on morphine all night, but wakes up here and there, asking to be held or for some juice. It's hard to tell in her groggy state, but it did seem like she was able to focus on me so there may have been an immediate improvement in her vision from the surgery. Might just be that I'm being (too) optimistic on that note, but we won't know for sure until she wakes up a bit more later today.

She is not happy about all the tubes and wires she's hooked up to, but some of them will start to come off today. She has a follow-up MRI coming up at 8:30, so unfortunately they won't let her eat again just yet. She still hasn't had any solid food since crackers for breakfast yesterday morning. Luckily she's too sleepy to be bothered too much by it. Around 5 this morning she was asking for crackers again (which were not yet allowed since she'd had a breathing tube), but fell back asleep before we could even get her some applesauce to eat.

In the ICU, only one parent is allowed to remain bedside all night, so Jason was put up in a sleeping room and got up there around one. Poor guy hadn't really slept much since Tuesday evening, so he was exhausted. I managed to grab about four hours of good sleep here and there last night, and was even able to stomach some crackers, so I am feeling much better today.

As far as next steps go, there's not a lot we know for sure. They are going to try to get her out of the ICU sometime today. We'll spend the next few days here, just recovering from the surgery. On Wednesday, the tumor board meets. They'll have all of the neurologists, oncologists and everyone relevant to cancer care in one room to look at all of her scans and the pathology results, and discuss the next steps. Dr. Browd said he wouldn't entirely rule out a second surgery, but he didn't think anyone would be lobbying for it. Most likely we will be looking at some form of radiation treatment as Step 2.

Surgery update

2010-04-29T22:17:00.000-07:00

Just got an update from the OR. The cyst has been deflated and they're working on removing the tumor, but they do know they won't be able to get all of it. This is what they prepared us for, but still not great to hear. They said Summer is doing well and they'll touch base in 1.5-2 hours if they're still in there, or they'll call sooner if they start wrapping up before then.

I should have mentioned in my prior post how Summer is handling all of this. There really hasn't been any change in her personality, except that she seems very tired without the cranky that usually comes with that. She has only been fussy when the nurses are taking vitals or adjusting her IV, or she realizes how hungry she is since she hasn't been able to eat since 8:30 this morning. She is mostly content to just lay talking to us with her blankie and her binkie. She was still playing peek-a-boo with us, even though she can't see.

I hope that no matter what happens with her vision or the treatment we have to go through, she stays the super-smart cheerful Summer we all know and love.