Fun in Boston

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...

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!

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

A busy holiday week

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

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!

Post-op update

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.