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.

Monday, November 15, 2010

The news is...no news.

We didn't learn anything definitive from this morning's scan.

The cyst is slightly smaller than we saw in her last scan on 11/3. While it's always good to see the cyst smaller, that doesn't really come as a surprise to us since Dr Browd drew 4mL of fluid right after her last scan. What we can't tell is whether the reduction in size is equivalent to 4mL of fluid, or if it re-accumulated some fluid after the draw.

If you read my last post, you'll know that we anticipated this might be a problem. Dr Geyer had thought that if it had been filling up as quickly as it has done in the past, we would have been able to see it. Perhaps it's slowing down, but it's really impossible to know at this point.

So, we'll have another HASTE MRI on 12/8 that will give us a better apples-to-apples comparison.

The HASTE MRI was very quick. And thank goodness for that - Summer hated the entire 30 seconds of it. But after that, she calmed right down. Apparently the entire thing was MY fault because the second she was done she said "All done. I can see my daddy now please?" From leaving Jason in the waiting room to walking back out to meet him, we were probably gone 2-3 minutes total.

Last week, we got a call from endocrinology to go over her lab results from 11/3. Everything looked normal (even her growth factors, amazingly enough), except her thyroid stimulating hormone (TSH) is still high, which means her thyroid is not functioning at 100%. This is a little bit contrary to what we'd heard before (from the HemeOnc nurse), but I figure we should trust the endocrinologist to know best about the endocrine function...

The TSH is pretty borderline high, but we've been monitoring it for six months now and it's continually high. Since good thyroid function is especially important for brain development at this age, they decided we should start her on some thyroid medication. She takes half of a tiny pill first thing every morning. Piece of cake. They'll retest her TSH levels after she's been on the medication for a couple of weeks, just to make sure it's working.

They also asked us to come in for another stim test - I'm not sure that I wrote about the actual test itself last time we had this done, but it was horrid. Assuming it all goes well, it shouldn't be too bad, but it didn't go very well last time. She'll have an IV injection to stimulate cortisol production, and then blood draws (theoretically from the same IV...but that didn't really work out so well last time) every 30 and 60 minutes to see how she's responding. That test will be this coming Wednesday, and we'll get the results back at our endo appointment on 11/24.

Thursday, November 11, 2010

More waiting...

Dr Geyer called us this morning to relay the discussion from yesterday's tumor board meeting. As I suspected, we're going to have a few more days of uncertainty about next steps.

We want to make sure the Interferon treatment actually failed before moving on to radiation. There wouldn't have been any point in trying Interferon if we weren't willing to give it the time it needs to work.

On Monday, Summer will have the HASTE MRI to check cyst size again. At that point, if they see noticeable growth, we'll probably head for radiation. If not, it may be that the Interferon treatment did work after all, and we'll continue to monitor with frequent scans.

While we agree this is the right approach, I have one concern about it - they drew fluid out of the cyst right after the MRI last week, so we don't have an apples to apples comparison point for cyst size. Will they really be able to tell whether there is any increase in fluid by comparing the 11/3 MRI with the 11/15 MRI? Seems like a little bit of guess work will be involved since they'll have to factor in the 4mL they withdrew.

I mentioned this to Dr Geyer and he thinks they will be able to tell, especially if it's filling up as quickly as it has in the past. But, this is a relatively short time frame between MRIs--not even two weeks--so I'm not sure I'll be satisfied with the results if, come 11/15, they see no change.

Given that bit of uncertainty, if the scan shows no change, we're going to push for the next MRI to be sooner than six weeks out. Since the cyst accumulated ~3 mL in less than four weeks, I don't want to wait any longer than that for the next scan.

I'll post more after our appointment on Monday.

Tuesday, November 9, 2010

Ophthalmology appointment and the waiting game

Summer's ophthalmology appointment was this morning. Summer was not exactly in a mood to put up with their tests, but they at least got some of what they needed. She's really not a morning person. No idea where she got that from... ;)

Now that she's a bit older, they use a different test to check her visual acuity--how well she sees when she's focused on something. This was more like the standard eye chart test, but with pictures instead of letters and only one appearing on the screen at a time.

She refused to let them test each eye individually, but with both eyes together she got up to 20/50 before giving up--not, I don't think, because she couldn't see the shapes, but because she was cranky and frustrated.

Even 20/50 is an improvement from her last eye exam, and well within the normal range for her age. I'm guessing her vision is even a little better than that.

They dilated her eyes and could see no swelling on the optic nerve that would indicate pressure from the cyst, so that's good. As before, the nerves showed a little pallor which indicates some damage, so unfortunately they haven't magically repaired themselves. Her left eye appears to be slightly worse than the right.

They asked us to come in in two weeks for another eye exam when she's (hopefully) feeling a little more co-operative, and they sent us home with a few eye patches and a chart to practice with.

We also received a call from HemeOnc to cancel our appointment with Dr Geyer tomorrow afternoon. He wanted more time to talk to the different providers in more depth after Tumor Board, so he's going to call us Thursday morning instead.

The scheduler also mentioned that they are waiting for the HASTE MRI results too, so although she didn't come out and say it, I got the distinct impression that we should expect much in the way of a firm plan when we do talk to Dr Geyer on Thursday morning.

Friday, November 5, 2010

A little more about Wednesday's appointment and what's next

As I mentioned in my brief post on Wednesday, the MRI showed no change to the tumor mass but an increase in cyst volume since the last MRI on 10/4. The cyst was still nowhere near as big as it was in August before her second surgery, thankfully.

During the appointment, we looked at the scans and reviewed the blood work results that had come back so far. Her thyroid function was slightly elevated, as it has been for all of the labs over the past six months. This could mean that she has lost some pituitary function and her thyroid is working a little harder to compensate, which is exactly what it's supposed to do.

Her growth hormone indicator levels had not yet come back, but I suspect they'll be low considering that she hasn't grown or gained weight in quite a while. Where she used to be 65th percentile for height and 10th for weight, she is now off the charts on the low end for both. Growth hormone production is something we knew she'd lose eventually - whether from the tumor itself or radiation - so this is not really a surprise at all.

Her neurosurgeon, Dr Browd drew just over 4mL of fluid out through the Ommaya reservoir while we were there. As a point of comparison, they drew 10mL out before the first Interferon treatment, and 1 - 1.5mL prior to each Interferon injection. The last time they drew fluid out was 10/11, and they then injected 1mL of Interferon back in, so the cyst had produced about 3mL in three weeks and two days.

There's a possibility we haven't given it enough time, and that perhaps the cyst produced 3mL of fluid in the first week or two after treatment and has since stopped. However, the more likely case is that it simply didn't work. Summer will have a HASTE MRI  (a very quick MRI with no anesthesia - comparable to the quality of a CT but with no radiation exposure) on Monday 11/15 to confirm whether or not the cyst is continuing to produce fluid.

We'll have quite a few appointments over the course of the next few weeks:

Tues 11/9 - ophthalmology at Bellevue (just dilation and check-up, no VEP)

Wed 11/10 - tumor board will review her case, and we'll meet with Dr Geyer to review tumor board discussion

Mon 11/15 - HASTE MRI, then review of scans with the nurse practitioner

Wed 11/24 - endocrinology with Dr Pihoker

We'll also be coordinating with Children's to send everything over to Boston again and they'll review Summer's case again on the 17th.

Dr Browd, indicated that his preference would be to send her for radiation now, since this cyst has repeatedly shown us it won't act the way we want it to. There are a few other options on the table though, so we'll see what they recommend after the board meets on Wednesday. It wouldn't be the first time we got ourselves in the radiation mindset and found something else to try first.

As always, I'll post more when I know more.

Wednesday, November 3, 2010

This darn thing is persistent

The tumor mass showed no growth, but the cyst did. It is not as big as before the last surgery, but it's definitely bigger than her last scan a month ago.

Dr Browd drew out a little more than 4mL of fluid today to shrink it back down. They will talk about her at tumor board next Wednesday to come up with a recommendation for next steps.

Friday, October 29, 2010

Six months ago today...

It's hard to believe it was exactly six months ago that we found out Summer had a brain tumor and she was undergoing her first brain surgery. It's even harder to believe that I had to write 'first' brain surgery because she's had two in that six-month timeframe. Add a little chemo to top it off...talk about a whirlwind!

Six months sounds like a very short time, but it feels like ages. I can't even remember what it was like not to worry about a brain tumor and how it will affect all of us for the rest of our lives.

We've been confronted with that worry every day. Is she rubbing her eyes because her vision has changed or is she just tired? Is she cranky because she has a headache from the tumor growing or is she just being two? Is she peeing a lot because she's developed Diabetes Insipidus or is that just how much she drank today?

We know there will be more hard times ahead, so we've been doing our best to keep things light and have fun every day. Sometimes that means we strip her down and let her finger paint on herself and the kitchen floor. Other times it's french fries and milkshakes for dinner, or covering the bath tub with crayon scribbles almost every night.

In that six months, Summer has gone from being a baby to a kid. She is active and very opinionated, and such a strong little girl. She turned two, learned a million new words, got potty trained and played hard. She loves to help cook dinner or make birthday cakes in her play kitchen, run laps around the house, and paint. She doesn't seem to be fazed at all by this whole thing, and we are so thankful for that.

Here's a little taste of our dynamic baby big girl:

Wednesday, October 20, 2010

What's next?

Summer will have an MRI on November 3rd to see if the cyst has continued to grow. We'll see Dr. Browd a few hours later to get the results. We love the Wednesday morning MRIs because it's the same day as the Tumor Board meeting, so they can review her case the same day if something comes up on the scan.

In the meantime, we're having a nice break from hospital visits. Summer hasn't asked even once about going to the doctor, which surprises me a little since she talked about it quite a bit during treatment. She's getting to that age now where she actually internalizes the things we tell her - it's pretty amazing.

She does love her doctors kit, and frequently "checks" us with a stethoscope, looks for monkeys in our ears, takes our blood pressure and gives us "pokes" in the head. I haven't picked a Halloween costume for her yet, but maybe some tiny scrubs are in order.

So what do we do with all the free time now that we're not at the hospital three times a week? Potty training! Summer has been doing really well with it at home, and now we're working on going out without diapers too.

There's not much else to report. I'll post again after her MRI, unless something comes up between now and then!

Thursday, October 7, 2010

Run of Hope and almost done with Interferon!

We've had a busy couple of weeks since I last wrote, including several more Interferon treatments, an MRI and the Run of Hope, in addition to every-day things like a visit to the Children's Museum, a day-trip to the cabin and visits with family and friends.

We've had great treatment sessions, like the one I described in my last post, and not-so-great ones where Summer is a bit more uncomfortable. We're not sure what the difference is from one treatment to the next, but suspect it might have something to do with how quickly they draw the fluid out. They try to pace it, but there's a delicate balance between going so slowly that Summer gets impatient and squirmy (doesn't sound like a big deal, but when you have a needle sticking in your head, it is...), or going too quickly and causing a headache.

With each treatment, Summer's reaction had been increasingly mild. If she gets a fever at all, it's very slight and doesn't last long. She also hadn't been as sleepy the day following treatment as she had been initially. Sometimes, she doesn't seem to be fazed at all.

She has a lymph node behind her right ear that swells up after each treatment, her body's reaction to having a needle poked through her scalp. We've been assured that nothing inside her skull would be draining to that lymph node, so it isn't anything to worry about, and it has usually returned to normal size in time for the next treatment.

We did start to get concerned last Monday, when Summer suddenly started sleeping a lot more. She would sleep in until 10 or later on the days we didn't have treatment, would be ready for a nap earlier than usual, and would nap much longer than usual. This sleep pattern was similar to what we saw before the tumor was discovered initially.

We also felt like something was "off" with her eyes. We couldn't confidently say what it was that seemed wrong, but just that something didn't seem quite right. We brought these concerns up to Cory Hoeppner, a nurse practitioner who has administered some of Summer's Interferon treatments, and she had a couple of possibly explanations.

With treatments like this one, the tumor cells get really agitated and inflamed before they start to die off. Summer's symptoms could have been because the tumor cells were really inflamed, causing additional pressure in her brain. Or, it could be that the tumor cells had already died off, causing a rapid decrease in pressure in her brain that her body would also treat like trauma. Of course, it could also be that the tumor mass or cyst had grown.

She agreed that it would be a good idea to get an MRI to see if we could determine what was going on, in case it was something that required intervention. There happened to be an MRI cancellation on Monday afternoon, so we quickly snatched up that spot and she cautioned us to have a low threshold for deciding to go to the ER.

Fortunately, we made it through the weekend without any increase in symptoms. Monday morning rolled around and, of course, Summer woke up on her own at 6am instead of sleeping in as she had been doing for the previous week. Figures.

The MRIs were running a little late, so we had a pretty cranky kid on our hands - she wasn't able to eat after 6:45am, and didn't go under anesthesia until about 2:45. The waiting was not fun, but the MRI itself went well.

Cory came in afterward and did the Interferon injection while Summer was still sleeping off the anesthesia. Summer twitched a little as she was withdrawing the fluid, so it must bother her some - more than just having people mess with her - but not enough to wake her up.

After the injection, Cory went to watch over the radiologists shoulders as they read the MRI images and prepared their report. She came back to let us know that everything looked great. The cyst was smaller - as we would expect, since they withdrew all of the fluid before the first injection - and the tumor mass hadn't changed.

The results didn't explain Summer's symptoms, but they reassured us that everything looked okay in there. That peace of mind was completely worth the trouble of another MRI, and I'm so glad that Cory was willing to order one based on our concerns.

We have two treatments left, one tomorrow morning and the final one on Monday afternoon. We - especially Summer - can't wait to be done with it! We're going to have to do something fun to celebrate.

Sunday morning was the Run of Hope. I really enjoyed being a part of this event and seeing people who have been where we are. It's unfortunate that anyone else has ever had to go through this, but reassuring to know we're not the only ones.

We'd like to give a huge thank you to all of you who helped us raise $5,500 for the Run of Hope! In total, over $200,000 was raised for pediatric brain tumor research. Here are a few pictures from the event.

"IN HONOR OF: me!"

The wagon came in quite handy - each of the four kids took a turn at some point.

Summer walked some of the way

break time!

Thanks to Sara Thornton for this finish-line photo
Yay Team Summer!

Summer got called up on stage to draw some raffle winners. I was surprised she wasn't too shy once she got up in front of all those people!
Everyone on Team Summer - and a couple of people from her team at Children's - signed Summer's shirt

Thursday, September 23, 2010

Interferon treatment update

I don't really have much new to report, but thought I'd check in now that Summer has had four interferon treatments.

This Monday's appointment was challenging - it was the first time I was able to tell Summer was in pain from the procedure. Ironically, it was also the first (and only) time we tried to use the numbing cream. So much for that helping her get through it.

Luckily, the whole thing was over very quickly. She was not in pain as soon as they were done and her reaction to the injection was even more mild than it's been in the past.

Even so, I was a bit more nervous going in for the appointment yesterday because I was afraid she'd be in pain again. This time it was Dr. Geyer performing the procedure (the two before that were with Dr. Leary), and I think Summer was a little more relaxed since she knows him better, but she was still a bit crabby from being woken up early.

The procedure went very smoothly. Summer cried for less than 30 seconds after the initial needle poke, and then was quite the rest of the time, quite content to watch Sesame Street while the procedure was going on. I think it helped that Dr. Geyer didn't have an assistant come with him to help hold Summer, so she didn't have the added stress of someone she didn't know trying to help hold her still.

We met the pharmacist who is the gate-keeper for the Interferon at Childrens, and we learned the reason they don't have the fluid ready before we get there. We had assumed that it had to be used within a certain timeframe of being mixed, but actually it's because it costs more than her car. And not a 10 year old, worthless car either...a 2006 Honda Accord. That's crazy! The insurance company must really love us now... :)

The pharmacist gave us her direct number so we can call her when we're en route to the hospital, and she'll start getting it ready then so we won't have to wait at all once we get there. They just don't want to throw away that much money if we end up canceling the appointment at the last minute. I certainly don't blame them!

Friday, September 17, 2010

Photos and treatment

We had a photo session with Keri Meyers Photography this morning. She did an amazing job! Summer was feeling better than yesterday, but still wasn't exactly cooperative. Keri managed to get some great shots anyway. She's so very talented! Visit the Keri Meyers Photography blog to see the sneak peek.

Also, make sure to enter the drawing for a session with Keri by making a donation to the Run of Hope page for Team Summer - rules and more details here.

Summer also had her second Interferon treatment today. It was pretty much the same deal as yesterday (including the waiting...but they're working on better timing for future sessions), except they withdrew only as much fluid as they replaced with Interferon.

Summer's doing well so far tonight, but she's starting to get a bit of a fever again. Hopefully her recovery will be as quick as the last time. We've got a busy weekend ahead, preparing for her birthday party on Sunday. Hopefully the weather forecast is wrong because the party is at the park...at least we have a shelter.

I probably won't post after each session, simply because there's nothing really new to say each time. I'll just give updates to check in every once in a while and as new information becomes available.

Thursday, September 16, 2010

First Interferon treatment

Yesterday was the first of 12 Interferon treatments. Summer wasn't happy about it (who would be, really?!), but overall it was pretty uneventful.

They shaved a little spot on her head over the reservoir, rubbed the area with iodine swabs to sterilize it.

Dr. Ojemann, the chief Neurosurgeon, inserted a needle into the reservoir. It had a flexible tube leading to the syringe so Summer didn't have to hold completely still the whole time, which was great. She did have to sit still in my lap, but I didn't have to hold her head firmly or anything like that. He withdrew all the fluid he could get out of the cyst - about 10mL. Then they unscrewed the fluid filled syringe from the end of the tubing and swapped it with the Interferon syringe so Dr. Geyer could push the medicine back in.

The entire process, from inserting the needle to pulling it back out, took about three or four minutes. Summer cried for the first couple of minutes, but had stopped before the end of it. I think she was mostly upset that they were messing with her and making her sit still, not so much because she was in pain. It was pretty amazing to see how much fluid they were able to draw out of there.

After the procedure, she was in a pretty good mood. I'm sure it was a relief to have the pressure in her head reduced. By about 8:00pm, she was starting to get a bit of a fever, but still seemed to be feeling okay. We gave her a little Ibuprofen to help control the fever and put her down for bed on her usual schedule. She slept through the night just fine.

I went to work today, but Jason said Summer wasn't feeling so well when she woke up this morning. She still had a fever and cried for about 40 minutes until the Ibuprofen he gave her kicked in. After that she seemed to feel much better, but took an early nap.

This afternoon, she wasn't feeling well again - just really cranky and clingy, without much appetite. She is napping again now. We were hoping for no reaction to the drugs, but these symptoms are all normal. She probably feels like she has the flu right now.

I'm hopeful that she'll feel better again tonight and tomorrow morning so she can have a little break before her next treatment at 3:00 tomorrow. I'm very excited for a photo shoot with Keri Meyers Photography in the morning - hopefully Summer will be up for it!

Tuesday, September 14, 2010

Starting Interferon treatment tomorrow!

Yesterday, we brought Summer in to Children's for a CT scan with contrast to check whether or not fluid injected into the cyst will leak. The only appointment time available was one without anesthesia, which I was really apprehensive about since she had never before been awake during a CT scan.

Dr. Browd was scheduled to do the injection of the contrast, but was in an emergency procedure when we arrived, so a couple of resident doctors who have followed Summer's case came down to help us instead. They swabbed the area around her Ommaya reservoir with iodine, then inserted a needle and withdrew some of the fluid from the cyst, replacing it with the same amount of contrast solution. The contrast acts like a dye. It's a clear liquid, but is visible on the CT scan.

Summer wasn't happy about it, but who would be? I think she was mostly just upset that we were holding her head still and people were messing with her. She bled a tiny bit after they removed the needle, but all-in-all it was a pretty uneventful procedure. She'll have to go through the same process (except they'll inject Interferon rather than contrast) twelve more times over the next few weeks.

We had to wait for a little while for the contrast to disperse, and then they brought us in to the CT room. I had to lay Summer down on the table, with her head positioned between two padded tension paddles and held down by a padded strap to keep it still. Then they swaddled her body onto the table so she couldn't squirm around. They left one hand free so I could hold it during the scan, and gave me a flashing Mickey Mouse light to distract her with. Yeah, right!

She was NOT happy at all about being strapped down on the table while it slid back and forth through a big machine that made a loud whirring noise. Luckily, it was all over pretty quickly, and they got the scans they needed without having to do it again. I felt awful for her, but honestly she screams much more forcefully when she's getting her hair rinsed out in the bathtub at home...so it can't have been too bad. She calmed down as soon as we got her unstrapped from the table and I was holding her again.

The scans showed no leaks from the cyst, so we're set to start with the first Interferon injection tomorrow at 3pm. This one will be slightly different from the rest of the treatments because they'll withdraw as much of the fluid as they can from the cyst before injecting a small amount of the Interferon. Going forward, they'll only remove as much fluid as they will replace with Interferon so they can tell if the cyst is continuing to produce fluid on its own.

This week, Summer will have had four doctor's appointments in five days. Today was Summer's two-year checkup with our pediatrician, Dr. Anderson. We talked about a lot--vitamins, diet, development, etc.--but there's not really anything major to report. Summer weighs 22lbs 12oz (6th percentile) and is 33" long (35th percentile). She had to have one shot, and it was a breeze. I miss the days when I would agonize over taking her to the pediatrician for shots because it seemed like such a big deal...

Friday, September 10, 2010

Summer is 2 today!

Summer kicked off her second birthday with an early morning MRI. Here she's sleeping off the anesthesia.

We didn't really learn anything new from it. The cyst is still refilling, which is to be expected. The catheter is still in place, and everything looks okay for us to start Interferon next week.

We talked about the feedback from Boston, and Dr. Geyer said that the tumor board here had also discussed the proximity to the optic chiasm and didn't think there was impending danger at this point. With careful monitoring, we should catch any changes in time to get to radiation before that area is put in danger.

On Monday, we'll go back in to have her head shaved over the Ommaya reservoir site. They'll sterilize the area, apply some numbing cream and use a needle to pull a little bit of the cyst fluid that has accumulated through the Ommaya. Then they'll inject the same amount of dye back into the cyst. This test will make sure the catheter is functioning as it should and will work for the treatment. She'll then have a CT scan - awake - to confirm that the cyst isn't leaking.

I'm not sure how well the CT scan will go. She's never had one unless she was already under anesthesia. They said I can hold her throughout the procedure and that it's pretty quick, but Summer has a reputation for fighting pretty much anything the doctors and nurses want to do. They may have to give her some sort of sedative to help her calm down. We'll see.

Then the plan is to start treatment on Wednesday afternoon. They'll withdraw as much of the cyst fluid as possible through the Ommaya and then inject a small amount of the Interferon into it. That will be the first of 12 treatments, which she'll have every Monday, Wednesday and Friday.

Yesterday I googled 'intracystic Interferon' (for about the millionth time over the past few weeks) and my blog came up on the first page of Google results. Hard to believe that the treatment we're about to start is so uncommonly used that my blog is one of the best hits...

Most of the information out there about Interferon is for systemic use, which is a much larger dose given intravenously, and affecting the whole body. It does have more side effects, but compared to other drugs they're pretty minimal. When given in a very small dose directly into the cyst, the only side effects we might see are flu-like symptoms: fatigue, fever, weight loss, loss of appetite and behavioral changes. These side effects will go away once the treatment is done.

We got home from the hospital at about 10am this morning and kicked off the birthday festivities:

The gifts
"Happy birthday Mommy!"
It's a surprised bell!
A walk to the store
Testing out the trike
She did not want to wear a helmet!
Someone gave Summer this amazing hand-me-down gift. She was very excited! Can't wait to play with it more tonight.
Summer's birthday card made it onto sproutonline.com, but sadly not on the Birthday Show. Next year I won't miss the deadline! They only scanned the front, but here it is:

It's been a fun day, despite a visit to the hospital, and there's more fun to come! Now, I'm off to frost a birthday cake!

Wednesday, September 8, 2010

A quick update

We heard back from Boston yesterday morning. I won't go in to great detail about what they said because it's mostly a repeat of things I've already explained. The overall verdict was that it's probably okay to try the Interferon and wait, with VERY close monitoring.

The proximity of the tumor mass to her optic chiasm (the part of the brain where the optic nerves cross) was enough to make them a bit nervous. Since the Interferon treatment won't treat the mass at all, the tumor mass will continue to grow. We have to be careful not to let it get too close to the optic chiasm where it could cause damage, or force us to include part of the optic chiasm in the field of radiation. Any damage done to that area would likely be irreversible, and the bit her vision has already suffered is enough!

They suggested staggering six-week checkups by a neuro-ophthalmologist with the six-week MRI schedule so we'd be checking in every three weeks, and would hopefully catch any significant changes early on.

We have an MRI on Friday morning (Summer's birthday!), followed by an appointment with Dr. Geyer. We'll be able to talk with him then about Boston's response (they've updated him as well) and confirm that we still want to move forward with the Interferon treatment.

I'll post again after that appointment.

Wednesday, September 1, 2010

Catching up

Sorry for the delay in posting. I’ve been busy doing a lot of research over the past two weeks, trying to reach a decision that we can be comfortable with.

Per my last post, we have been given a decision to make – try a chemotherapy option, called Intracystic Interferon treatment, or go directly to radiation. It’s an impossible decision, with no clear winner, but we’re forced to somehow choose.

Jason had always leaned toward the Interferon option, while I have had more reservations about it. After doing a lot of research, and talking to multiple doctors across the continent, I’m leaning toward Interferon too.

There just really isn’t much on it. I found two studies, completed in 2004 and 2007, with a grand total of 30 patients treated with Intracystic Interferon. It is a drug that is used frequently to treat other cancers, just not this one and in this manner.

I also found a comparison of Bleomycin (the drug initially suggested) and Interferon, which showed that Interferon did seem to have some advantages. Mainly, there were fewer side effects if the drug were to leak out of the cyst.

The studies that have been done appear to be promising. It doesn’t work for everyone, but when it does, it buys a median of just over a year until radiation becomes necessary. Of course, it’s a very small sample size, so it’s impossible to say how much time it will buy for us, if any.

I received one report back from the Craniopharyngioma support group about the use of this drug. Although it didn’t save their son’s life from a very aggressive form of the tumor (it metastasized after two bouts of radiation), it did shrink the cyst and provide him some relief from headaches during his last few months.

I spoke with Dr. Merchant at St Jude’s about the treatment, and he was under the impression that this course of treatment had been abandoned. He referred me to a doctor in Vancouver, B.C., who had actually written the comparison article I mentioned above. Her response was that it certainly does still have a place in treatment for Craniopharyngioma, but that it’s only appropriate in select cases. Summer’s case is one of them. Most people aren’t diagnosed this young, and the risks of going straight to radiation are lower, so it’s just not an appropriate treatment step for them.

After looking into it further, I started to feel more comfortable with the treatment itself, but just wasn’t sure I wanted to take the risk of allowing the tumor mass to continue to grow. What if the tumor spouts off another cyst and we’d have to go back for another surgery? What if the tumor causes pituitary problems that wouldn’t be a direct result of the radiation, like Diabetes Insipidis?

We decided to get a second opinion from Massachusetts General Hospital, one of the places we might end up for radiation at some point anyway, to make sure they felt comfortable holding off on proton therapy for a while, assuming the Interferon treatment works. I spent a week working with Children’s to collect all of her records and send them off to Boston. The nurse practitioner we work with on the HemeOnc team, Katie, was immensely helpful with this task, and we were able to get everything to them by yesterday afternoon, in time for the cutoff to review Summer’s case today. We should hear back from them today or tomorrow.

In the meantime, we also had a few appointments at Children’s. Last Wednesday, we had an Ophthalmology appointment to check her eyesight. We were happy to find out that her visual acuity (how well she sees when she’s looking directly at something) has actually improved since her last vision appointment after the first surgery. She’s well within the normal range for her age.

Just this morning we had another VEP test (the one with the electrodes), and Summer was very cooperative for it! It showed a bit more optic damage from the cyst growth, but you certainly wouldn’t know it from watching her. She doesn’t bump into things or seem to have trouble seeing things. We do know that her peripheral vision is still damaged, as she’ll often startle as if something just jumped out at her, when it had been there the whole time. Luckily, she’s so young that she won’t ever know anything different.

We won’t know how big her visual field is or what level of contrast she can see until she’s old enough to do some more extensive testing that would require her to verbalize what she’s seeing.

Last Friday, we had a wound check with neurosurgery (everything looks great, she’s healing well!) and an appointment with Dr. Geyer to talk more about the options. After speaking with him, and going over our concerns again, we have decided to move forward with the Interferon treatment as long as Mass. General agrees that we can hold off on proton therapy for a while longer. We’ll probably start treatment in the next week or two, and we’ll monitor with MRIs every six weeks. The first will be at the end of September.

Dr. Geyer reiterated that he thinks either choice will be the right one. It’s simply a matter of weighing the risks and figuring out which ones we’re comfortable taking. Choosing to go with Interferon means that we’re willing to risk another surgery in order to give Summer’s cognitive functions a little more time to develop before radiation.

Even if we went to radiation right away – and that’s still a possibility if the Interferon doesn’t work – she would still be a pretty normal kid. She just may have a little more difficulty with some subjects in school than she would have without radiation. We would never know for sure. But, we do know that we want her to have the best chance in life possible. If that means another torturous couple of weeks from another surgery, we think it would be worth it in the long run to know that we did everything we could.

Saturday, August 21, 2010

Our hospital stay

I took some photos during our hospital stay in case Summer is ever curious about what she looked like after brain surgery. I didn't intend to post any online, but a few were too sweet not to share.

Friday, August 20, 2010

FAQs and more info

We're home now and adjusting back to normal life. Summer was not as thrilled as we'd expected when we first got home last night. I think she was disoriented from being woken up, too close to needing more pain meds, and wanting to stay outside. But after some oxycodone and time to adjust, she was running around the living room like nothing had happened.

Today we've had a couple of visitors, and even took a walk to the park where Summer went on the swings. She had a rough morning, but was very happy as soon as we got outside.

Here I'll address some of the questions I get most frequently about treatment and this second surgery:

Q: Since the doctors already think she'll need proton therapy, why did Summer have to have another craniotomy? Why not just do the radiation instead?
A: Summer's tumor is part solid mass and part cyst. In the last three and a half months since her first surgery, the cyst grew very rapidly and was quite large. It can only be reduced surgically.

Radiation is effective in treating the mass portion of the tumor, and preventing it from producing more cysts, but it won't fix any cysts that already exist. Although the cyst didn't appear to be causing any problems for her now, it needed to be addressed surgically to prevent future problems and shrink the field of radiation that will eventually be necessary to stop the tumor from growing and refilling the cyst.

Q: Why not just remove the whole tumor? It's benign, right?
A: Yes, Summer's tumor is benign but it's considered malignant by location, since there isn't really any room to spare in the brain. It's also sticky, and very difficult to remove without damaging important structures, like the optic nerves, pituitary gland and hypothalamus.

Our doctors recommend a very conservative approach to tumor removal since radiation typically has a very high success rate for craniopharyngioma. So far, she has no pituitary damage, and we hope to minimize that damage by leaving it alone. Surgical removal of the tumor frequently causes more pituitary problems than radiation, and is more likely to affect production of some of the hormones that are most difficult to replace effectively.

Q: So what's next?
A: Jason and I have some big decisions to make in the next week. We have an appointment with the oncologist on Friday to discuss whether we'd like to move forward with the chemotherapy option, or just skip straight to radiation.

As of right now, we're leaning toward chemotherapy. There's no guarantee it will work, but the doctor doesn't think we lose anything by trying (side effects are very minor) and we might gain more time until radiation becomes necessary for Summer.

The only real downsides are: 1) it might not work, 2) it means more wait-and-seeing, and 3) it won't treat the tumor mass, so that will continue to grow (and could potentially put off more cysts).

On the plus side 1) it might work and buy time; 2) it could mean Summer experiences fewer side effects from radiation if we are able to wait, although we'll never ever know if this is true or not, and 3) the mass may grow slowly enough that it won't cause problems or increase the eventual field of radiation too much.

It's all a lot of hypothetical and we'll-never-know-for-sure stuff to deal with. Frankly, it's more than my brain can handle right now. Up until Wednesday, we thought proton therapy was the guaranteed next step and chemotherapy was never even on our radar. I honestly was a little bit relieved to give up the wait-and-see approach and DO something about this darn tumor.

We haven't yet had a good scan with Summer, which doesn't make the prospect of more waiting-and-seeing any easier for me. We did bring that concern up with the oncologist and he agreed that scans every six weeks would be beneficial, at least in the beginning, since her tumor has proven it works quickly. He also said that if it becomes apparent the treatment is not working, we can stop at any time and skip to radiation. That flexibility is good.

I have a lot more research to do before I'll be comfortable committing to the chemo option. It would be injections of Interferon, not Bleomycin as I had stated before, so I want to look into the difference. There's not a lot out there on this particular treatment used for Craniopharyngioma because most kids are old enough to just go straight to radiation and don't need to buy time. I'll dig up some studies, solicit feedback from the Craniopharyngioma support group I belong to, and also get a second opinion from Dr. Merchant at St Jude's if possible. I already have come up with more questions for Dr. Geyer (the oncologist here at Children's) since we met with him yesterday.

Now, I'm off to go on another walk with Summer!

Thursday, August 19, 2010

Potential new treatment option

We had a relatively eventful day yesterday, with some potentially exciting news from the doctors about a possible treatment route for Summer that would allow us to avoid radiation for a while longer.

They discussed Summer's case and reviewed her post-op scans at the tumor board meeting yesterday, and everyone was very happy with the "drastic" reduction in size of the cyst and Dr. Browd's placement of the catheter.

We met with Dr. Browd and Dr. Douglas (the radiation oncologist here) after the tumor board meeting. Dr. Douglas explained our radiation options in a little more detail.

We learned that Summer's tumor is uniquely positioned in front of her pituitary, rather than above it where most craniopharyngiomas are located. Dr. Douglas was quite surprised that she isn't showing any sign of pituitary damage so far.

We talked about conformal radiation therapy (also called standard, or IMRT), which isn't really an option in my mind because it radiates more normal tissue than proton therapy, the route we were told to start planning for now.

We also talked about something called Gamma Knife, which can be done here. It is a radiation treatment that lasts 1-5 days, with 195 beams aimed at the tumor. It's not available to children under three, but is an option we should consider if we can delay radiation a bit longer.

Just the reduction of the cyst doesn't buy us a lot of extra time. The cyst has proven that it will continually refill, and it will be quick about it. The problem with just continually draining the cyst as a way to control things for a while is that the cyst may not fill uniformly. It could section off (as it appears to already have done once) and start filling in a portion that is not reached by the catheter.

Moving directly to proton radiation should keep the cyst from continually refilling. But, it isn't ideal to do it at such a young age. Her vision shouldn't be affected by proton therapy because the reduction of the cyst has pulled it away from the optic nerves, so the field of radiation wouldn't need to include that critical structure. Also, the major language and motor control centers are far enough away that they will not be affected. Proton therapy has the ability to aim the beams to avoid these areas.

What it can affect, and likely will to some extent, is her cognitive reasoning, short-term memory and pituitary function. There are some essentially guaranteed losses from radiation - growth hormone production being one of 5 or so hormones that she is quite likely to lose the ability to produce. All of them can be replaced. Some of the more difficult hormones to control, like the one that regulates urine output, is pretty unlikely to be affected, so that bodes well for Summer's quality of life going forward.

Dr. Douglas and Dr. Browd both touched on a new treatment option that came up in tumor board. I'll give an overview of it here, but we still have a lot of questions to ask Dr. Geyer about it too.

There is a treatment called Intracystic Bleomycin therapy (ICB), which is essentially localized chemotherapy, and that they think may help us buy time for radiation. Chemotherapy is generally not effective in treating this particular type of brain tumor. In fact, even ICB wouldn't really do any damage to the tumor mass itself, but it could help control the cyst and keep it from re-filling.

They would inject Bleomycin directly into the cyst through the Ommaya reservoir and catheter they implanted on Monday. The when/frequency/dosage sort of details are all still questions I have. This should kill the tumor cells that line the cyst walls and produce the motor oil-like fluid that the tumor produces to fill the cyst.

I did some initial research online, and found that it seems to be a relatively successful treatment, with very few side effects. They would first need to test for leaks from the cyst by injecting contrast into the cyst and then performing a CT scan to check for leaks. If there are leaks present, the side-effects are much more concerning. If there aren't, the only side effect reported seems to be possible headaches at the time of injection.

Like I said, we still have TONS of questions for Dr. Geyer and I want to have him confirm the things I found online. But, this definitely sounds like something to consider.

If it doesn't work, we would just go on to radiation anyway. If it does, we have bought some time. I'm also curious to know how much time Dr. Geyer thinks it could realistically buy, given the growth in the tumor mass so far. Studies done report an average somewhere around two years. Even six months could be a compelling reason to try it.

I'll post more when I know more. We're hoping to see Dr. Geyer today, before we GO HOME! Summer has been like a broken record with that request the past couple of days. I certainly can't blame her!

Tuesday, August 17, 2010

Catching up

Sorry for the delay on the full update, Summer had a rough afternoon, so I hadn't had the chance to get my hands on the laptop until now.

Overall, the surgery went well. Dr. Browd made me quite nervous when he pulled Jason and I into a conference room to update us after the surgery since last time we talked right in the ICU waiting area. Turns out he just thought it would be easier to talk where it was quiet since the waiting room was pretty busy. He was right, I'm sure, but it gave me a bit of a scare.

Everything went pretty much as planned. They went in through the same incision, although they left a bit more hair behind this time. Her skull had healed almost completely shut, so they had to open that back up again.

They did encounter quite a bit of scar tissue during the procedure, including the dura mater being stuck down on her brain after the last surgery. This puts her at risk for seizures, but Dr. Browd thought it was quite unlikely she'd have any. Just to be safe, Summer will be on seizure meds for the next three months to give her brain a chance to heal before we wean her off them. We won't know until then whether the surgery has caused her to have seizure problems or not.

They think the cyst was actually two globular cysts, one inside another, and the catheter that is in there now goes through the membranes into both cysts, so it should work for draining any fluid that these cysts put off in the future.

She had to get a little blood during the surgery, and was pumped full of IV liquids, and she's still a little puffy from all of that, even 24 hours later.

Jason and I were both amazed by how good she looked the night of her surgery, and into this morning. The immediate swelling was minimal compared to last time. Or maybe we just knew what to expect so it didn't seem as bad.

She was talkative at various points through the night and seemed generally happy. The morphine made her comfortable enough to sleep well on her own. She really liked the nurse we had last night. I woke up a few times to see them chatting away and not needing me at all. Summer is generally not a fan of nurses, so that was pretty surprising!

Over the course of the day, she has puffed up quite a bit more (as is normal), but her eye did not swell completely shut like it did last time. She has been rubbing at her eyes and nose, which doesn't help the swelling. They gave her some Benadryl a little while ago and that seems to have helped.

I am not sure where the Ommaya reservoir is located on her head. We can't see it due to the current post-op swelling, but I'll ask the neurosurgeon in the morning if he's in the group of doctors that come to check on her.

She's been a bit uncomfortable this afternoon - the oxycodone/tylenol combo is not quite enough to keep her comfortable, and they won't allow ibuprofen until tomorrow. We'll probably get her some morphine to help her sleep through the night.

She's been understandably cranky, but we're glad to be out of the ICU so quickly. Hopefully we'll really be home in 3-4 days this time. They did say the recovery might be a little longer this time around, so I'm not sure. I'll have to ask in the morning.

I'm sure I forgot a million things, but I'll post again tomorrow.

We've moved!

We are now in Giraffe-3009. I haven't been able to sit with the laptop yet, so sorry for the lack of update!

Summer's doing well, just napping a lot. Her tummy is giving her a little trouble from all the meds, but otherwise she's doing well.

A good night

Summer had a good night, is showing no signs of complications yet and got some sleep.

I haven't been able to hold her yet, but she's content in her crib for now anyway.

She woke up a few times in the night and was chatting away, so that's a good sign. She really liked the nurse we had overnight, so she'll be sad when she wakes up and sees that she went home.

Neurosurgery came by and told us we will be moving to the floor today, assuming they have a bed available. I'll post a room number when we do, and more about the surgery when Jason comes back with the laptop so I don't have to type it all out on my phone.

Monday, August 16, 2010

She's done!

Dr Browd said everything went well. Haven't seen her yet, but soon! I'll post more in the am.

Wrapping up

They've finished draining the cyst and will begin finishing up now. She should be done in 45 minutes to an hour, at just about the three hour mark.

They'll call us down to the ICU waiting room to talk with Dr Browd about how the surgery went, while Summer's getting her post-op CT. Then we'll be able to go see her!

Also, I got an email from Dr Merchant at St Jude today. His protocol won't be ready for several more months, and it wouldn't be smart to wait for it. So Jacksonville is out. Boston or Houston here we come!

Surgery started 10 minutes ago

Just got an update from the OR. They started about ten minutes ago and Summer's doing great! They'll call with another update in a couple of hours.

They just took her back

About 20 minutes ago they took Summer back for a pre-op CT scan. They put her under with the strawberry-scented gas again and will take her straight to surgery when that's done.

All said and done, should be about five hours; 3-4 for the surgery plus pre- and post-op CTs, travel time, etc.

I'll post more updates throughout the surgery. They will try to page us with updates every two hours or so.

They'll take her back around 2

The OR is still in use, so the surgery will start around 2, instead of 1:15.

Sunday, August 15, 2010

Big day tomorrow!

Tomorrow's the big surgery day! We will be checking in at noon, with the surgery scheduled to start at 1:15pm. We've been told it will take 3-4 hours.

Last time they called us a few times to provide updates during the surgery. I'm testing a new blogging app on my phone right now, so assuming this works I'll provide quick updates as news comes in.

I have a lot of packing, organizing and cleaning to do tonight, so thankfully the worst of my sinus infection has passed and I feel up to it. I would leave the cleaning for later, but the shower has to be cleaned before Summer's special antibacterial bath in the morning.

We'll be getting up before 5am for some milk and toast, and hopefully she'll go back to sleep after so I can too!

We love to have visitors help pass the time away during our hospital stay, but here are a couple of things to know:

In the ICU, only three people total (including Jason and/or me) can be with Summer at a time, but visiting gets a lot easier and more relaxed once we move to the floor. I'll post our room number once we do.

We can't have flowers or balloons in the ICU, but they will be allowed after we move.

Meals can't be brought into the ICU, except the ones provided by the hospital. If you'd like to bring snacks after we move, please remember that Summer is on a gluten-free diet.

Also, we won't be able to answer our phones, receive text messages or check voicemail in the ICU, but we will have access to email.

Thanks everyone for your thoughts and prayers! Let's hope this one goes as well as the last, with a quick recovery and no side-effects.

Thursday, August 12, 2010

More surgery details

We spent a couple of hours in the Children's waiting room, trying to get squeezed in to Dr. Browd's schedule. He had a packed day already and wasn't able to see us until noon, at the end of his clinic hours. We looked at Summer's MRIs again and talked about the surgery.

Again he mentioned his surprise that her vision hadn't yet been affected. We looked at the scans from the side-view, which showed the cyst is definitely not a deflated balloon - it's a full, round cyst. The only possible explanation is that it's pushing more out to the side this time, so the change in direction might be sparing her optic nerves at this point.

This surgery will not be quite as easy as we had hoped. It will be quite similar to her first one. She'll get another awesome haircut, they'll use the same incision and go in through the same pathway.

He said it might be a little more difficult getting down to the tumor, since there will be some scar tissue to go through, but he won't be going as deeply in to her brain this time. He'll go only as far as he needs to in order to reach the cyst, puncture it and insert a catheter to drain it. He'll leave the catheter in the cyst and attach it to a reservoir which will stay under the skin on the side of her head permanently to allow for draining at any time.

The goal of radiation is to completely treat the tumor mass and, in theory, stop it from producing the fluid that fills the cyst. But if the cyst does ever fill up again, whether it's right after radiation or decades in the future, the permanent reservoir will allow us to drain the fluid without requiring another surgery.

The surgery is set for Monday, probably sometime around 12:30/1pm, but they'll confirm the time with us tomorrow. We have a pre-op anesthesia appointment at 1pm tomorrow, followed by a full physical at 2:30pm.

Between yesterday, today and tomorrow, we'll have spent about 12 hours at Children's. They're doing a great job of ramping us up for another stay!

Dr. Browd said we'll likely be there 3-4 days this time. From what I recall, that's what they said last time too, so we'll be planning for a full week. At least this time we have a few days to plan, get organized and pack for it.

Now, Summer and I are off to Target to stock up on supplies - extra binkies, a Wiggles DVD. You know, the necessities.

Wednesday, August 11, 2010

More from the tumor board

Since the tumor board met this afternoon, I've spoken with Dr. Geyer, Summer's oncologist, and Dr. Browd, her neurosurgeon.

Here's what we know:

Summer will be having surgery to drain the cyst, probably early next week. They'll install a shunt that will connect to a reservoir between her skull and her skin, and the fluid will collect there instead of in the middle of her brain, to allow for easy drainage as needed. It makes me nervous to have something like that in her head, but as my mom pointed out, at least we'll be able to tell when it's filling up.

We'll be meeting with Dr. Browd sometime in the early part of tomorrow to talk with him face-to-face about the surgery and to schedule a date. I'm going to push for Friday if at all possible, but it sounds like it will be sometime early next week unless things change drastically. She'll have an overnight stay in the PICU followed by another 2-3 days on the floor, for a total of 3-4 days in the hospital. A little better than last time, but not by much! At least this time we will be able to plan for it and pack accordingly.

They also reviewed her scans more closely and found that the tumor mass has grown. The cyst and fluid expansion accounts for most of the growth, but the mass itself has grown a little too. They feel that the risks for long-term side effects from radiation at this young age no longer outweigh the risks of the 'wait-and-see' approach, and are recommending that we start planning for proton therapy radiation now.

Planning can take anywhere from one to two months, and we'd be sent to either MD Anderson in Houston or Massachusetts General in Boston, depending on which one could get us in first.

I've emailed Dr. Merchant at St Jude again to let him know of this development and to see if there is any chance his protocol would be ready in or near that timeframe so we could still participate. In the event that it's possible to work with Dr. Merchant instead, we would be going to the University of Florida Proton Institute in Jacksonville. When I spoke to him a little over a month ago, it wasn't to be ready for 3-4 months, so I'm keeping my fingers crossed that things went more quickly than expected!

I'll post again after our appointment with Dr. Browd tomorrow.

MRI results

The MRI itself went well. Summer had to get a finger poke in the morning for endocrine labs, which is never fun, but that was the only time she really got upset today. They made her sleeping gas strawberry scented, which she seemed to enjoy - she was still talking about it when she woke up after the MRI.

The results of the MRI, however, are mixed. The good news is that the mass portion of the cyst doesn't seem to have grown much, if at all. The bad news is that the cyst has grown significantly. It looks to be about three times bigger than it was before her surgery, when she was practically blind. We're not sure how it could possibly not be affecting her vision now, but somehow it doesn't seem to be.

Jason noticed that the cyst seems to be thinner than before, more like a deflated balloon, so perhaps it's not putting as much pressure on the brain and optic nerves, even though it's spread out and touching more of the surrounding tissue than before.

The tumor board at Seattle Children's Hospital meets Wednesday afternoons, so thankfully we won't have to wait long to find out more. They'll talk about her then with all the relevant doctors (oncologists, neurosurgeons, radiologists, endocrinologists, etc) and get back to us later today, probably sometime after 2:30 or 3pm.

It sounds like they will recommend surgery in the next couple of days to drain the cyst, and possibly to install a shunt with a reservoir that will collect the fluid and make it easier to drain as needed in the future.  We are under the impression that this will be a less invasive procedure than before, but the neurosurgeon will tell us more once they decide on the best course of action.

Dr. Geyer, her oncologist, also mentioned the possibility of a more aggressive surgery to remove more of the cyst wall and the tumor. I shared with him the advice I received from Dr. Merchant, Chief Radiation Oncologist at St Jude's, which is to avoid such a surgery because it has a much higher risk of affecting her quality of life, and didn't necessarily provide more benefit than radiation without the more aggressive surgery. Dr. Geyer agreed.

We also talked with Dr. Geyer about the protocol Dr. Merchant is developing for proton therapy on children under the age of three, and the possibility of us participating in that group. He felt that there probably (he hasn't reviewed the protocol since it's not out yet) isn't a difference in the radiation treatment itself, or a very minor difference, but that there definitely is benefit in the more intensive monitoring that likely comes with the study, and that they could learn from Summer (since she's in a very small minority of children diagnosed with this type of brain tumor so young). It would be great to know that they can use what they learn from her to help other kids in the future.

Dr. Geyer did mention that it might be prudent to move forward with radiation now, but that we have time to think about it since the mass itself doesn't seem to have changed much. Regardless, the cyst needs to be drained now. He didn't give a definite recommendation on the radiation front, and said again that they'd talk it over at the tumor board.

I emailed Dr. Merchant all of this info just a few minutes ago, so we'll see what he has to say as well. I'll post again after we hear back from the tumor board this afternoon.