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.

MRI on Monday

I just realized it's been a month since I posted last, so I thought I'd share a quick update.

Summer has been doing mostly well over the last month. She was sick for about a week, which prompted us to start a stress dose (3x what you would normally need) of hydrocortisone to help her body cope with the illness. It was as a precautionary measure the endocrinologist recommended because her cortisol levels hadn't been tested in a while. If her body wasn't naturally producing the cortisol it needed, this type of flu-like illness could have been very dangerous for her. Luckily, her levels ended up being just fine on their own, and we were able to wean her off the medication last week.

A few days before she got sick, Summer started sleeping poorly, was especially irritable, and not interested in food at all. At the time, we didn't know she was getting sick, so this concerned us a bit. We also hadn't heard back from Dr MacDonald about Summer's last scan (from March 4th), and how it compared to the most recent scans done in Boston (our doctors here at Childrens only had one from early January to compare to, so we were interested to see if it had changed since the mid-February scans from Massachusetts General).

It turned out that the records never made their way to her, so I requested them from Childrens again. We had gone back and forth with Dr Geyer about the time frame for the next scan and were originally going to wait three months unless Dr MacDonald wanted one sooner. Since Dr MacDonald hadn't yet received Summer's most recent scan and we were getting a little worried about the irritability, I decided it was time to push for scheduling her next MRI. I sent an email to our team at Childrens outlining our concerns, and we now have a HASTE MRI on Monday morning (4/18) to check the cyst size.

Since Summer has recovered from being sick and is back off the hydrocortisone, her behavior has mostly returned to normal. We also heard from Dr MacDonald that the overall cyst size was stable, with some minor increases and decreases in various pockets of the cyst. I'm no longer terribly concerned about what the scan will show, but we're keeping the appointment for the peace of mind.

I'll post on Monday to let you all know what we find out.

Catching up

Today Summer had her port-a-cath removed. As a refresher, that's the access port they placed in January for the daily administration of anesthesia while we were in Boston. Since they no longer need it, it was time to have it removed. Jason and I were glad to see it go - it was pretty disconcerting to feel this big lump under her skin every time we picked her up.

The surgery went well and was very quick. It was only about 35 minutes after they took her back before we got the page telling us they were finished and closing up. 30 minutes or so after that, we talked to the surgeon briefly, and we saw Summer about 20 minutes later. She was awake already and NOT happy.

I'm not sure if she was in pain or just having a bad anesthesia wake-up (they can vary widely in reaction), but she was furious. I'm talking all-out screaming, flailing around, temper-tantrum-of-your-nightmares kind of stuff that lasted for a good 30 minutes before she finally calmed down. It was the most intensely angry reaction she's had to anything so far - Jason and I were shocked - but once she calmed down, it was like a switch had been flipped. She was talking normally and politely, asking if she'd get to see the doctor again, like nothing had ever happened.

She hasn't seemed to be in much pain today - the oxycodone is working well for her. She'll be on that for a day or so, but should recover from this pretty quickly and should only have pain at the incision site.

After two weeks, I think we've fully adjusted to being home. We miss our Boston friends, but are glad to be back! We've had a great time catching up with family and friends, and getting back into our normal routine. Summer's been in a "mommy needs to do it, not daddy" mode for the past few days, and I'm guessing that's part of adjusting to me being at work during the day instead of home with her. Otherwise, she's been coping with all the changes amazingly well.

Summer has had one MRI since being back. It showed the cyst being smaller than the last scan Children's had on file, but that scan was outdated so it's hard to say what the real results are. We're waiting to hear from Dr MacDonald in Boston once she is able to review a copy since she has Summer's most recent scan. Assuming there's no change in cyst, it will probably be another 2 1/2 months before her next one.

She's still not exhibiting many side effects from radiation, which we are grateful for. I've heard reports from some of the other parents of major headaches and continued fatigue, but Summer doesn't seem to be experiencing any of that.

She has had some hair loss, which is mostly noticeable on her right temple where her hair is short from her December surgery. I pointed it out to Jason one day, and apparently it really freaked her out - she's been having meltdowns about it from time to time ever since. Jason and I have had to reassure her numerous times that it will grow back. Poor kid - we'll have to watch what we say around her about the medical stuff while she's in this sensitive stage.

One of the questions Jason and I get asked most is: So, did it work?

The answer is: We don't know, and we won't for some time - maybe years. The tumor is not expected to shrink in size at all, so we won't have any indication of the cells dying off. We'd know sooner if it didn't work because they'd see growth in the tumor mass, but Summer's tumor (the mass part) is so slow-growing that it might take a year to tell if there really has been growth or not.

Unfortunately, we won't ever really be certain that the radiation worked on the cyst. We'll know if it didn't work only if her shunt also fails and stops draining the cyst, which would result in it filling up again. But if there's no change in the cyst, it means that either the radiation worked or the shunt is still working.

I think that's about all I have to update you all on now, but I'll post again when we hear back from Boston - hopefully in the next couple of days.

The big day!

Last night, we picked Jason up from the airport. He flew back out to Boston (thanks Uncle Jimmy!) to be here for Summer's last treatment and help us get back home.

Here's Summer patiently waiting for him at baggage claim:

She didn't spot him in the crowd of people, but once I pointed him out, she jumped out of the stroller and ran to meet him.

Today, Summer finished her final radiation treatment. Her last session this morning went well, and she was in good spirits for her bell ringing. I managed to keep the tears in check, which is quite a feat since I could barely keep from crying when complete strangers would ring the bell. It's a very simple, but emotional thing.

Below are some photos from the last day, and a video of the bell ringing toward the end of the post.

Summer's last day happened to also be a Toy Friday. This is the toy cabinet she got to choose a toy from each Friday. Nurse Rachel, who usually sets it all up, was on vacation, so it's a little less organized than usual but Summer didn't care one bit. Today she chose a giant coloring book.

When we walked into the prep/recovery room, there was a surprise waiting for Summer. Her bed was decorated with a congratulations banner and gifts:

 

This lucky girl gets to take home her very own monkey puppet, which was one of her favorite toys to play with each day:

After Summer woke up from treatment, we went out to ring the bell. She was pretty anxious to do it - she's been talking about it a lot since she saw Casey ring the bell on Wednesday.

We'll head back over to the proton center on Monday to say goodbye to Nurse Rachel, but Summer couldn't leave today without saying goodbye to Dr Nick, her favorite anesthesiologist:

 

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

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

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

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.