Tuesday, December 28, 2010

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.

Thursday, December 23, 2010

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:


...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.

Thursday, December 16, 2010

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.

Tuesday, December 14, 2010

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.

She's done!

We haven't seen her yet, but just got done talking to Dr Browd and everything went well!

I'll post more details later.

They just took her back

We won't get any mid-op updates since this one's so quick. I'll post when she's done!

Surgery delayed to 3:30ish start

Playing Candy Land while we wait.

Monday, December 13, 2010

Surgery is tomorrow

Summer had a couple of pre-op appointments this morning. Both went well - she is getting to be such a big girl. She didn't put up a fight for a single test or measurement and was very talkative with the nurses. She even asked one to kiss her head and invited her to our house to meet Rocky and Chloe.

I kept telling Summer "no pokes" all morning...but the nurse at the second appointment made me into a big fat liar. She needed a current blood count, so Summer had to get a finger poke after all. She took it in stride though, and didn't put up much of a fuss.

We finally found out the surgery schedule and recovery details. We'll check in at 1:15pm tomorrow. It's no fun having surgery at all, but surgery that late in the day makes for a miserable morning. Summer can't eat after 6:30am and can only have clear liquids until 10:30am, nothing after that. I think the surgery actually starts at 2:30, but I can't remember for sure. Luckily it's written down somewhere.

The surgery will take about an hour to an hour and a half. She won't need to be in the ICU after and will go straight to the recovery floor. They'll keep her overnight and she'll likely go home on Wednesday. She will be in some pain from the placement of the tube and the incision in her abdomen, but it all sounds pretty manageable.

We don't yet have the full schedule for Boston, but that should be coming sometime today. I did get confirmation that we'll be able to stay at Christopher's Haven starting on January 10th (right now radiation is slated to start on the 11th, so that's perfect timing). I spoke to the manager there this morning, and it really sounds like a great place. We hope to be able to go visit when we're out there for prep stuff in two weeks.

I'll post brief updates tomorrow when Summer goes into and comes out of surgery.

Thursday, December 9, 2010

Surgery Tuesday, Boston the week after Christmas

After my last post, I got a call from Dr Geyer to fill us in on the tumor board's discussion about Summer yesterday afternoon. He had talked to them about periodically draining the cyst up until (and probably during) radiation to keep it small. The smaller the area to be radiated, the better.

In their meeting, Dr Browd suggested instead converting her Ommaya reservoir into a permanent ventriculoperitoneal (VP) shunt that would continuously drain into her abdominal cavity and prevent the cyst from filling up at all. The board agreed that this was a good idea - not only will it keep the cyst at its smallest for radiation, it will alleviate the trauma caused to her brain by the cyst repeatedly growing and shrinking as it fills and is drained.

Dr Geyer gave us a heads up that they were recommending this so we wouldn't be surprised when neurosurgery called to schedule the surgery, but didn't have any details about the surgery itself. He assumed it would be similar to her prior surgeries. I was pretty skeptical at first - I wasn't sure that it was really worth another invasive surgery and all the risks that go with it - so when the neurosurgery scheduler called this morning to set up the surgery, I asked her to have Dr Browd call so we could talk it through.

I spoke with Dr Browd this afternoon and he explained the surgery in a little more detail. He will re-open her scalp along the same incision line (probably not the entire thing, just a smaller part around the reservoir), pop off the Ommaya reservoir and attach tubing. The tubing will be fed down behind her ear, down her neck and into her abdominal cavity, all underneath the skin. He will make a minor incision at her belly button to help guide the tubing down into her abdominal cavity. He wouldn't need to open her skull at all.

The recovery is quick - she'll likely go home the next day, unless she is having trouble managing pain, in which case they might keep her an extra night. After talking to Dr Browd, we felt much better about the surgery and have decided to go through with it. It will provide us some relief, not having to stress about the cyst filling up again, and it will make radiation safer and more accurate without the cyst size continually changing.

We'll have some pre-op appointments on Monday, and the surgery itself will be Tuesday, probably early afternoon. We'll find out the scheduled time at the appointments on Monday.

I also spoke with Anne at Mass. General, and we now have a loose timeline laid out. We will fly out to Boston the week after Christmas for a few days of preparatory appointments. Then there will be a break (a week to a week-and-a-half) before radiation actually starts. During that time, they build custom equipment specifically designed for Summer and her tumor. We haven't decided whether Summer and I will come home during that break or not. The actual treatment will then start the second week of January and continue for six weeks.

I'll have more specific dates and an answer from Christopher's Haven on whether they'll have a place for us sometime tomorrow.

Wednesday, December 8, 2010

Boston, here we come.

Summer had a HASTE MRI this morning to see if the cyst is still producing fluid. The scan itself went relatively well. Only one parent is allowed back with her, so Jason took her this time while I waited in the waiting room. Summer wasn't happy about being strapped to the table again, but the nurse asked her to help count to 10 as a distraction. She told Summer that when they got to 10 she would be done and could get back up.

Nurse: "1"
Summer: "2"
Nurse: "3"
Summer: "10. 10! 10! 10!"

When the scan was over, Summer told Jason "that was a great nurse!," gave hi-fives all around and said bye to everyone before coming back out to me. Usually when she's upset about something, she won't say a word and buries her head on our shoulders until we leave, so she must not have thought the whole thing was too bad.

We then met with Dr Geyer to review the results and he cut straight to the point - the cyst is bigger than it was at her 11/15 scan, and is only a few mm shy of the 8/11 scan when it was at its largest. So now we know the Interferon didn't work, and we're officially planning on Proton Radiation at Massachusetts General Hospital as the next step.

Dr Geyer drew somewhere between 6 and 7mL of fluid out through the Ommaya today. He said he could have taken more, but would prefer to draw it out in stages. We'll probably take her in for weekly or bi-weekly fluid draws between now and leaving for Boston.

Also before we go, Summer will probably have another VEP test to establish her visual baseline, and perhaps an EEG to spot any potential issues before we wean her off Keppra, the seizure medication she's been on since her last surgery as a preventative measure.

I called our contact at Mass. General and let her know the status. Over the next few days she'll start scheduling and we'll know more specifically when we'll be there hopefully by the end of the week. Sounds like it will be early January. We'll have a few days of preparatory stuff to do there, and then a week or week and a half of waiting until the actual treatment can begin.

I also put word in with her that we'd prefer to stay at Christopher's Haven if at all possible. It looks like a really great setup - a set of fully-furnished apartments across the street from the hospital. The apartments are reserved for families traveling there for proton radiation, but there are only seven of them, so hopefully we can get one.

As unfortunate as it is that Summer will go through radiation at such a young age, the wait-and-see approach was extremely stressful and emotionally challenging for us, so there is quite a bit of relief in having a definitive plan for treatment.