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.
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!
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