She's almost 5!

We've been quite busy this summer - enjoying the sun, having fun at the cabin, and doing lots of swimming. We also went on a little trip to the Oregon coast with friends. It's been great!

 

I can't believe Summer will be 5 in just a few weeks! Since my last post (geez, time has flown), Summer has had two MRIs, both of which showed no change. We had a bit of a scare early in the year, when she didn't want to dance at ballet because she didn't want to shake her head around, leading to an ER trip and an off-schedule CT scan. Everything was fine, and we decided to take a break from dance for a while since it seemed she had made the whole thing up to get out of dance for the evening.

Instead, she's been enjoying gymnastics and soccer, with a little bit of swimming thrown in for the summer. She's a bit less coordinated than her peers, so we've been trying to keep her in physical activities that challenge her muscles and help develop her coordination. Gymnastics, especially, has helped quite a bit, and for the summer she's been having weekly 1/1 lessons with her favorite coach so she could get more hands-on help with parts that are especially challenging for her (keeping her legs straight for stretching, walking on the balance beam, etc.).

The lack of coordination could be that she's having trouble keeping up with the incredible amount of growth we've seen since she's been on growth hormone (she's tall now!)...or it could be that she inherited my clumsy genes. Who knows. We'll be seeing a doctor from the Rehabilitation Medicine Care Team in our next round of follow-ups to find out what else we can do to help her in that area. These doctors specialize in physical therapy for children with many conditions, including traumatic brain injuries, which is essentially what Summer has after the tumor and surgeries, so they will certainly be able to give us pointers and reassurance.

We'll also have a follow-up session with the neuropsychology team where they'll decide whether to re-test her now or wait a little while. She's very excited for school to start back up in a couple of weeks. She's been much more interested in art and reading and writing lately, which I love to see. In other major news - she gave up her pacifiers! They've been such a comfort thing for her with all she's been through, that I wasn't in any hurry to make her get rid of them...but the time finally came.

Also, coming up on September 29th is the annual Run of Hope. This is our fourth year participating, and we can't wait! It's always a very fun, family friendly event. We hope you can join Team Summer!

 

Summer is 4!

Yesterday was Summer's 4th birthday and it was sure a busy day! First day of preschool, first day back at ballet, and a birthday dinner at her favorite restaurant - Red Robin. Four years old already, I just can't believe it!

I was thinking back on past birthdays, especially her 2nd, when she was fresh out of her second brain surgery and had just started Interferon treatment, and I am so grateful for where we are now!

Summer is doing really well. We've been making some adjustments with her growth hormone treatment, but other than that there's not much to report! She is definitely becoming more curious about what has happened to her, and asks questions about it all the time. Trying to explain some of these things in preschool terms is pretty challenging, and she puts me to the test on a daily basis. Here's a snippet of last night's conversation:

Sum: "Mom, why do I have to have poke (what we call her shots)? I don't like it and you don't like it. Next time we see the doctor you should just tell her we don't want to do it anymore."

Me: "I wish we didn't have to, but you need that medicine to help you grow big and strong. It's something we have to do even though we don't like it."

Sum: "No, mom. Eating good food makes me grow big and strong. I don't need poke."

Me: *excited that she actually knows this because she doesn't eat like she does..."Yes, you need food too, but your body is...extra special...and it needs the medicine from poke to help the food make you big and strong..."

...and the back as forth continued for another 5 minutes. I think she just eventually got tired of listening to me and gave up.

I don't think I ever really expanded much here on her neuropsychology evaluation, so here's a quick summary: It was nice to hear that she has caught up to her age group on motor skills, since those were behind on her last evaluation, probably the result of vision problems prior to diagnosis and treatment. She's very advanced verbally, and a bit on the short-tempered side for her age. Those who know her well know there's nothing in those words that surprise us! :)

Summer's next MRI and round of follow up appointments are coming up on the 26th. We also have the Run of Hope on the 30th and we'd love it if you'd join us! We have raised well over $5,000 each year for the last two years, but we're a little behind the game this year. If you can join us in supporting this great cause, please do so here. Donations will of course be accepted until the day of the event, but if we reach $2,500 (or receive an individual donation of $1,000) in the next two days, Summer can be listed as an event Angel again, with her name on the t-shirts. Here's the link to donate.

Happy birthday to the smartest, funniest, strongest, most spirited and beautiful girl I know!

Another good MRI!

Just a quick note to share that Summer's MRI today went well - no change from last time - which is great news!

We have taken a short break from growth hormone because of the knee pain she was having at night, but will be starting back up at a half dose tonight and working our way back to her normal dose as long as the knee pain doesn't return.

They drew labs today for a number of things, including a Celiac disease screening, so we'll have those results back along with the results of her neuropsychology evaluation in a week or so.

Slacking

Okay, I know I've been slacking on the tulip post. I've been so busy with photography for my business (www.jessicalarsonphotography.com), that I haven't really gotten around to editing any of my own photos! Soon, I promise.

Last week, we started another phase of follow-up appointments, and Summer has an MRI next week. Everything is going really well so far. We saw endocrinology last week, and Summer has grown 3 inches now since December. Now if only she'd put on a little weight! I think she's actually starting to suffer from some growing pains at night, and I have a call back in to the endocrinologist to follow up on that. I think they'll probably wait to change anything with growth hormone until we get all the labs done with her MRI next week.

The endocrinologist also ordered a Celiac disease screening to go along with her normal labs since she continues to have tummy trouble. I'm curious to see how that comes back - you may remember I suspected some level of gluten intolerance a while back.

Summer also had a neuropsychology assessment this week, which she completed on her own while I sat in the waiting room. I'm so anxious to find out the results (next Friday), especially since I couldn't be in the room to see how cooperative she was. I think it must have gone well - she finished on the shorter end of the time frame they allow (2-6 hours), and was happy to go back in for more testing after her snack break halfway through.

Yesterday, my dad sent me a quote from Mark Twain about his favorite daughter. It could have written about Summer; it describes her perfectly. I keep reading and re-reading it, and thought I'd share it with all of you:


"She was a magazine of feelings and they were of all kinds and of all shades of force; she was so volatile, as a little child, that sometimes the whole battery came into play in the short compass of a day. She was full of life, full of activity, full of fire, her waking hours were a crowding and hurrying procession of enthusiasms ... Joy, sorrow, anger, remorse, storm, sunshine, rain, darkness -- they were all there: They came in a moment and they were gone as quickly. In all things she was intense: in her this characteristic was not a mere glow, dispensing warmth, but a consuming fire."

Love it. Love her!

An old one, but I immediately thought of this picture when I read that quote!

Two years ago...

It was two years ago yesterday that we found out about Summer's brain tumor and she had her first surgery. She's three and a half, so we've been dealing with this tumor now longer than we haven't.

And somehow, I completely spaced about it until today. I thought about it in the days leading up to the 29th, and I thought about it today, but I didn't think about it yesterday. I thought about the tumor, of course - that never leaves my worry list - but the two year anniversary didn't register.

Maybe that's a good sign - a sign that one day, 4/29 will mean nothing to us. It will be so far behind us that we won't even notice it's passing. Doubtful, since I am good at remembering numbers. Names and faces not so much, but numbers stick with me. Except, of course, on days like yesterday when I have no idea what the date is.

Luckily, we happened to be doing something fun anyway - we spent the day up at the Skagit Valley Tulip festival.

Two years ago:



And look at her now!

More photos to come from this beautiful day later.

It's that time again!

Registration for the Seattle Run of Hope is open!

What? A fundraiser and walk to support pediatric brain tumor research

When? Sunday, September 30, 2012 - races start at 10am

Where? Seward Park in Seattle

Last year, we raised over $8,000!

Join or sponsor Team Summer here.

Another round of follow-up done!

After a full day Wednesday, and one appointment on Thursday, we're done with another set of follow-up appointments, and everything came back great!

On Wednesday, we were at the hospital from 7:30 until 4. She had an MRI, saw Neurosurgery, Oncology, Neuropsychology and Ophthalmology.

The MRI went well. The anesthesiologist couldn't stop saying how impressed she was with how well Summer handles the whole process of going under. She actually looks forward to it now and gets excited when we tell her she has a "strawberry air" day.

Coming out of anesthesia is a completely different story. Sometimes she wakes up just fine, but usually (like on Wednesday) it puts her in a very foul and testy mood for a couple of hours.

The MRI came back stable for both the solid portion and the cyst, so that was great to hear! Nothing new to report from the Neurosurgery or Oncology appointments.

We met with the Neuropsychologist for a meet-and-greet, just to touch base and decide what sort of evaluations we should have done. Summer had a thorough neuropsych evaluation in Boston, and they recommended annual evaluations, so we'll have another one with the neuropsych team here soon. I also asked them about ADHD testing, and I think we'll do that too. It's my understanding that ADHD is a pretty common problem for kids with this tumor and Summer definitely has some of those symptoms, so we'll have to see where that leads.

Luckily, we had a little break after those three appointments. We went over to U-Village for lunch and let Summer unwind on the play area a little before Ophthalmology. It definitely helped her mood, and the Ophthalmology went well.

It was a very long day, but I love having nothing new to report from those appointments!

On Thursday, we saw Endocrinology and talked through how everything's going with growth hormone. Summer has grown an inch and a half since December (!!!), and she now weighs 29.5 lbs. The growth hormone seems to be working really well, so they don't plan to change the dose any time soon. It's amazing how much of a difference it has made in her body composition in such a short time. Just looking back at her Santa pictures, you can tell a difference in her face and her arms. She's just a lot leaner now.

The shots themselves are going really well. It's not a battle every night any more, which I am so thankful for. She still doesn't want to do it, but she doesn't put up a fight.

Summer has been asking about her tumor more often, and we do our best to explain it to her in three-year-old terms, but it's difficult! I'm sure she doesn't quite understand yet, but she'll get there. The other day she said to me "Mom, my brain tumor hurts." It was so strange to hear those words coming out of her mouth! Thankfully it was right after her MRI, or I would probably have been more worried. After a little more probing, I figured out she was just fishing for a band-aid. Funny kid!

Here's a video of her dance recital from Friday night. She's on the end of the back row, on the right side.

There is nothing benign about it

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!

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!"

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

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

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

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...

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

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

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

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

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...

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

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.