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.