Friday, April 30, 2010


Summer has been doing really well all day. She's on steroids to control swelling, and those make her a little cranky, but even so she's been a pretty happy kid considering recent events. She's got her appetite back and has been asking for nuggets, apples, and brownies (thanks Nicole!) among other things. She's slept on me for most of the day, so I'm hoping she'll continue to sleep through the night and let me sleep a bit too.

The doctors are all really happy with how she's progressing. They've been watching her urine output and blood sodium levels as two indicators of a pituitary gland that's not functioning properly. So far, they haven't seen anything wrong, but they're continuing to monitor those things closely. They've also ordered some blood hormone tests to see if she is deficient in any of the many other hormones the pituitary gland is responsible for.

They did a follow-up MRI early this morning to get after-surgery images of her brain, and they also verified that the rest of her spinal column is clear. Of course, that means they had to sedate her again, which makes three times in less than 24 hours. Poor kid!

The doctors haven't confirmed it, and she won't be seen again by the ophthalmologist until next week, but all of the family members who have seen her awake are convinced that she can see and focus on people and things. She's been able to grab things out of our hands and can tell it's me when I walk in the room, which she definitely could not have done yesterday. We're not sure how fuzzy her vision is, but we're pretty darn sure it's better than it was yesterday.

Today we've seen the original neurologists we met with on Wednesday and Thursday morning, the neurosurgery team who operated on her last night, and several of the ICU doctors and nurses. Her regular pediatrician came out to check on her too, which I really appreciated.

They are keeping us in the ICU overnight, but plan to move us out to a normal room in the morning. She's on a few different medications for various things, but she has only been needing Tylenol for pain since this morning, which is a good sign.

Most people say she looks better than they would expect, but she still looks pretty miserable. Her right eye is purple and swollen completely shut. She's missing about 1/3 of her hair (which they saved for us - her first hair cut!) and has about a 12" incision (length estimate provided by Uncle Bill since I'm terrible at guessing dimensions), starting right in front of her ear and curving up behind her hairline. It ends just a bit left of her widow's peak. We're going to count the stitches so she'll have a number to brag about when she gets to elementary school. :)

I totally botched the spelling of the cancer they think it might be in a previous post. It's actually called Craniopharyngioma. Again, they don't have the biopsy results back, so they don't know for sure that this is what it is. That particular type of tumor is usually benign, BUT since it grows in the brain where there isn't much room to spare, they usually will follow up with a second form of treatment (surgery being the first) to keep it from growing again.We'll know more on Wednesday or Thursday after the tumor board meets and gives us an update.

Again, a huge thank you to everyone for your emails, facebook messages, phone calls and visits. We appreciate it so much!

The morning after surgery

NOTE: We cannot use our cell phones in the ICU. We can still connect to wireless, so we will be able to check voicemail and email if you need to get a hold of us.

The surgery went well. I should say, it went as expected. They were not able to remove all of the tumor because it wall of the cyst is involved with the optic nerve, carotid artery and pituitary gland. They always err on the side of caution around those areas, so they left quite a bit of the tumor tissue behind, rather than try to remove it and potentially cause more serious damage.

We really have to give a HUGE thank you to everyone for their support. We literally had a crowd of family here with us the entire time we were waiting, and it would have been so much harder for us to get through those 5 hours or so without everyone there. So THANK YOU. 

Jason and I really like her team of surgeons - Dr. Browd is the main one we've been talking to, but we've met and spoken with a few others several times. They are all extremely helpful and you can tell they genuinely care about helping Summer get better. The nurses have been fantastic too. We really couldn't be in better hands.

She finished up around 11:30 last night and woke up right away. She was sitting up right away and talking, asking for us as soon as they removed her breathing tube. The doctors and nurses were pretty surprised at how quickly she bounced back from the anesthesia. The nurse said that a doctor commented on it and she just shrugged and told him "this girl does what she wants!" Everyone who knows her will tell you that's true. :)

We were able to see and hold her shortly after she woke up, and could already tell she still has all of her spitfire personality intact. They told us what the incision would look like and reminded us that her head would be partly shaved, but it was a bit of a shock to see the side of her face so swollen from where they removed and replaced the bone. The swelling will probably get worse before it gets better, and she does look like there will be some bruising. Her right eye might even swell shut, but that's entirely normal.

She's still wrestling with the nurses every time they try to take her vitals or mess with her IV. She's been kept pretty comfortable on morphine all night, but wakes up here and there, asking to be held or for some juice. It's hard to tell in her groggy state, but it did seem like she was able to focus on me so there may have been an immediate improvement in her vision from the surgery. Might just be that I'm being (too) optimistic on that note, but we won't know for sure until she wakes up a bit more later today.

She is not happy about all the tubes and wires she's hooked up to, but some of them will start to come off today. She has a follow-up MRI coming up at 8:30, so unfortunately they won't let her eat again just yet. She still hasn't had any solid food since crackers for breakfast yesterday morning. Luckily she's too sleepy to be bothered too much by it. Around 5 this morning she was asking for crackers again (which were not yet allowed since she'd had a breathing tube), but fell back asleep before we could even get her some applesauce to eat.

In the ICU, only one parent is allowed to remain bedside all night, so Jason was put up in a sleeping room and got up there around one. Poor guy hadn't really slept much since Tuesday evening, so he was exhausted. I managed to grab about four hours of good sleep here and there last night, and was even able to stomach some crackers, so I am feeling much better today.

As far as next steps go, there's not a lot we know for sure. They are going to try to get her out of the ICU sometime today. We'll spend the next few days here, just recovering from the surgery. On Wednesday, the tumor board meets. They'll have all of the neurologists, oncologists and everyone relevant to cancer care in one room to look at all of her scans and the pathology results, and discuss the next steps. Dr. Browd said he wouldn't entirely rule out a second surgery, but he didn't think anyone would be lobbying for it. Most likely we will be looking at some form of radiation treatment as Step 2.

Thursday, April 29, 2010

Surgery update

Just got an update from the OR. The cyst has been deflated and they're working on removing the tumor, but they do know they won't be able to get all of it. This is what they prepared us for, but still not great to hear. They said Summer is doing well and they'll touch base in 1.5-2 hours if they're still in there, or they'll call sooner if they start wrapping up before then.

I should have mentioned in my prior post how Summer is handling all of this. There really hasn't been any change in her personality, except that she seems very tired without the cranky that usually comes with that. She has only been fussy when the nurses are taking vitals or adjusting her IV, or she realizes how hungry she is since she hasn't been able to eat since 8:30 this morning. She is mostly content to just lay talking to us with her blankie and her binkie. She was still playing peek-a-boo with us, even though she can't see.

I hope that no matter what happens with her vision or the treatment we have to go through, she stays the super-smart cheerful Summer we all know and love.

Catching up

Off and on during the past few days, we noticed that Summer seemed to be spacing out and unable to focus and grab things out of our hands. We attributed it to being tired as a result of a growth spurt and weren't immediately concerned, especially since it was only happening some of the time.

Yesterday, Wednesday, I made an appointment with the pediatrician for Thursday morning, but by the time I got home on Wednesday her vision had very rapidly declined. Wednesday morning, she woke up before I left for work and was definitely able to focus on me. By the time I came home on Wednesday, she didn't seem to be focusing at all. When I asked "where's Daddy?" Summer could not point him out, even though he was sitting just a few feet away. We immediately packed up and headed for Seattle Children's Hospital.

We were seen by a pediatrician and a neurologist in the triage room and admitted overnight, with the hope of getting an MRI for Summer that night or early Thursday morning. After a restless night, with lots of poking and prodding, we found out that the MRI wouldn't be until 3:30pm. While we waited, we were seen by an ophthalmologist, who did some tests and told us that Summer did have some vision, but not the level of visual attentiveness they would expect.

We expected to send her in for an MRI and spinal tap (in case they saw something in the MRI that would require testing of the spinal fluid), which would have taken about an hour. We sat with her while they put her under, which was an extremely traumatic experience for Jason and I, but Summer was out before she had the slightest clue what was happening. Twenty minutes later, the neurologists came looking for us and, as the neurologist said, "blurted" out the bad news. Summer has a mass in her brain. They wouldn't know what it was until they did a biopsy, but the spinal tap was no longer necessary. They sent Summer directly off to get a CT scan, and a team of neurosurgeons came to talk to us right away.

Based on the MRI images, the head surgeon thinks the mass is a cranialfrangioma (sp?), which is a type of cancer. There is a small mass behind her pituitary gland, with a cyst coming off of it. The cyst grew to a size where it was putting pressure on her optic nerves, which is what caused the decline in vision. They decided to take her in for surgery as early as they could get her into an OR.

She had time to barely wake up from the first round of anesthesia before they put her back under for the surgery. She is still in surgery now, as I type this. They are opening her skull and following a "natural pathway" between the lobes of the brain to get to the mass and cyst. Because of it's placement, it is a relatively safe surgery - as far as brain surgeries go. They will open the cyst to alleviate the pressure on her optic nerves, and will remove as much of the mass as they can safely. At that point, they'll test the tissue and, hopefully, know exactly what it is and how to move forward.

If it is the type of cancer the doctor believes, it is very difficult to remove all of it because of the way it attaches to the pituitary gland and surrounding brain tissue. They would likely follow up with radiation in the hopes that the mass will not grow back.

We don't know if she will get any part of her lost vision back just because of the reduction in pressure on the nerves, but if it does come back it could be right away or it could take months. The doctor said that since she is so young, she has a much better chance of rebounding back to some form of her normal self. There is a not-so-small chance that her pituitary gland will not function properly, which means she'll likely be on replacement hormones to help her develop normally.

They started the surgery about an hour ago now, so we expect to see her in the next 3-5 hours. We'll be in the ICU overnight, so I may not be able to post an update until the morning. I'll try to keep this site up to date so everyone can read about what's going on.

Please keep Summer, Jason and I in your thoughts and prayers! We could use all the good mojo out there.