What a week!

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

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

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!

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

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!

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

She's done!

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

Should be done in 45 minutes to an hour.

Surgery rescheduled - woohoo!

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...

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

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!