Monday, May 24, 2010

Visual Evoked Potential test

Summer had an appointment with Ophthalmology for a Visual Evoked Potential (VEP) test on the 12th.  I didn't post right away because Jason and I were a little confused about the results, but I talked to the ophthalmology technician this morning and got some clarification.

The purpose of this test was to find out what level of damage, if any, she had to her optic nerves as a result of the brain tumor. The results will provide a baseline for her brain's response to visual stimuli, now that most of the swelling in her brain is gone. She'll have this test every 3-6 months (probably closer to 6), and they'll compare future results back to the one from today in an attempt to detect any problems early.

For the test, the doctor glued electrodes all around her head (which she did NOT like) and then sat Summer and I down in front of a TV screen. He played 30-second segments of flashing black and white patterns - one segment had  black and white lines, another had a checkerboard pattern, etc. - and dangled a small figurine in front of the TV. As the segment played, he sang a song and jerked the figurine up and down in front of the screen. Meanwhile, the electrodes measured her brain activity in response to the changes in pattern on the TV and the motion of the figurine.

Summer did way better than Jason or I expected her to with this test since it required her to sit still and focus on the screen without distraction. That's not a problem for her when Caillou is on, but a flashing checkerboard is not quite so interesting.

She made it through several of the brief segments, so the doctor decided to try and push his luck to get one or two more in, but Summer was done at that point. They got enough information from the ones she did sit through to give us a better idea of what her vision is like.

She can see, and her visual clarity is in the normal range - we already knew this. This means that things look just as clear or fuzzy to her as they should for any 20 month old kid.

That said, there was some damage to her optic nerve. The optic nerve is pretty inflexible and damage isn't usually reversible. We are incredibly lucky that it wasn't worse, especially when you consider that three weeks earlier she wasn't really able to see at all.

When it came to the smaller checkerboard patterns, her brain wasn't reacting the same way it had for the larger checkerboard patterns. This, combined with a normal visual clarity rating tells us that Summer can't see contrast as well as the rest of us. We won't know exactly what level of contrast she can see until she is old enough to tell us.

It could mean that she'll only have difficulty telling the difference between two very similar shades of the same color, or it could mean that she won't be able to recognize bigger differences in shades - like between red and orange. Until she can tell us there's a difference between two colors, we won't know.

The reduced ability to see contrast may make it a little harder when she's learning to read. This is where Jason and I were confused - black letters on white paper seems like pretty significant contrast to us. Well, it is - but small fonts make it harder to see the contrast and identify the shape of the letters. Also, a lot of children's books have text written over image backgrounds, rather than on a white background.

We can help her by getting books with large fonts on white paper (think the 'I Can Read' style), and by paying attention to lighting when we're reading to her or teaching her to read. She might outgrow those needs once she has learned to read, or she may need the large-print books for the rest of her life.We'll just have to wait and see.

At first, Jason and I weren't sure how to feel about these results. Everything had been so positive so far, that it has been easy to forget where we were three and a half weeks ago. Even this tiny bit of slightly negative news made us feel sad for her. But then we remembered. Three and a half weeks ago, Summer was essentially blind. Now, she can point out planes in the sky again and spot a flower to smell from across the street. We just have to keep reminding ourselves how lucky we are!

Wednesday, May 12, 2010

What we learned today

The short story: Summer is healing well and it is more likely than not that she will have to go through radiation sometime in the next few years. Nothing really new to report, just a lot more detail about the things we already knew.

Here are the details:
Today we met with the neurosurgery nurse, Mandy, who has been working with us since Summer's surgery. She checked out Summer's incision site and said everything looks like it's healing really well. She was a little concerned about the amount of swelling that was still there, but Jason and I could tell that it had gone down significantly over the past two days. Just since that appointment this morning it has gone down quite a bit more. At this rate, I wouldn't be surprised if the swelling is gone entirely by the morning.

As far as recovery from the surgery goes, Summer can't swim or go to her gym class for 2-3 months post surgery. We're supposed to keep her in "feet on the ground" activities until then. Not sure how well we will succeed at that - she is entirely back to her normal self and (high!) activity level at this point.

They're not too worried about her bumping her head because the skull that was removed is tightly stitched in place with string. Obviously it's not ideal that she bump her head, but there's no helmet necessary, which is good since I doubt we'd be able to keep one on her!

Speaking of stitching...we finally asked how many stitches Summer has. The nurse said that she has two more layers with about the same number of stitches we see on her head - so that's approximately 174 stitches. I think that buys her some bragging rights. :)

After the neurosurgery check-up, we met with Dr. Geyer, a Pediatric Oncologist. So far, we've been dealing primarily with the neurosurgery team and had only been introduced to one oncologist and the HemeOnc nurse. From here on, they'll be our primary contacts and the ones we work most closely with on Summer's care. Today's meeting was our chance to formally meet with the doctor and ask any questions we had come up with so far.

We went over the pre- and post-op MRI scans, and got to see that the tumor is now just a little bigger than half its pre-op size. Prior to the surgery, it was about the size of those big gumballs you see in the quarter machines at the grocery store. Now it's about half an inch at its widest point. It is still bigger than Jason and I both imagined it would be post-op, but it is definitely a sizeable difference.

Dr. Geyer talked to us a little more about how the tumor board discussion went last week. Apparently they had a pretty long conversation about Summer because the path we're taking with her care is a little different than standard treatment for craniopharyngioma. It is very rare for a child under the age of 2 to be diagnosed with this type of tumor. Most are between 5 and 14 years old, and can therefore begin radiation right after the surgery. Because Summer's so young we're taking the wait-and-see approach. As I've mentioned before, we're hoping to postpone radiation for a while, thereby reducing the long-term side effects it might cause.

There is a small chance that the tumor could be done growing. All cells (with the exception of malignant ones) are programmed to multiply until a certain point, and then they stop. It could be that the stopping point for these tumor cells has been reached or will be reached very soon. Unfortunately, there's no way to know.

From here, we'll monitor the tumor with MRIs every three months. We'll also have her vision and hormone levels tested every 3-6 months as an additional indicator of changes in the tumor. Jason and I will also be on constant watch for the same sorts of changes we now know were caused by the tumor - sudden fears developing (sign of vision changes), increased urination, etc. We've been told to have a low threshold for calling the oncology team so we can catch any changes quickly.

If the cyst portion of the tumor continues to grow, we may choose to deal with that and continually reduce the pressure it causes to avoid any damage to the optic nerves and pituitary gland. There are a number of ways they could do this - further surgery, inserting a tube into the cyst that would grant access from outside Summer's head whenever they need to drain the cyst, or the injection of something into the cyst that would stop it from re-filling. Any of these options would buy us more time until we need to do radiation.

If the tumor tissue itself continues to grow at a pace that concerns the doctors, we may do another surgery and/or begin radiation treatment sooner rather than later. There are a couple of different types of radiation that can be done, but the one they recommend for kids Summer's age is called proton beam radiation and is only available in a handful of places. We'd likely go to MD Anderson in Texas or Massachusetts General in Boston for the entire 6 week process. Children's has a close relationship with both centers.

The way the radiation works is that it aims a number of radiation rays (anywhere from 5-100) at the tumor from various angles. Each beam is a fraction of a dose (1/5 to 1/100, depending on the number of rays). They converge at the site of the tumor, so the tumor gets a full dose, but the surrounding tissue where the radiation enters the head only gets a small portion. The doses last about a minute a day, 5 days a week for 6 weeks.

The radiation technology available here, at UW Medical Center, creates rays that pass all the way through the head, so the normal brain tissue between the entry point and the tumor, as well as the tumor and the exit point, is subject to radiation. Proton beam radiation goes to the tumor and then stops, so less radiation that gets delivered to normal brain cells.

So there's a lot of information about something we don't even know if or when we'll have to do. There is no magic age that suddenly makes radiation less risky, but it sounds like if Summer were three years old they would recommend we start radiation now.

I'll continue to post here on the blog as we find out any more information. We have a vision appointment in two weeks or so, then endocrinology tests in 4-6 weeks. Summer is doing so well now, there's really nothing more to report! Tomorrow, it's back to work for me!

Sunday, May 9, 2010

Best Mother's Day yet!

I am so happy to be home with my family. Summer is really healing quickly, and has kept us laughing non-stop since we've been home. We think she must have been getting headaches (from bad vision, or from the tumor itself) for quite a while. I never would have called her a cranky kid, but she has been SO happy all the time since we've been home.

She even went a full day without a nap yesterday, and didn't have any meltdowns at all! That's unheard of!

We thought we were going to have a number of bad habits to break her from once we got home - bottles of milk all day long, sleeping in bed with Mommy, and a binky 24-7 - but she has transitioned home really well.

I have no medical news to report at this point, but thought you all might like to see some pictures of Summer now that she's home.

Summer helping Rocky use the phone...

C'mon Papa, I know the doctors said no horsing around...but one ride won't hurt!

Pretending she's a pirate - can you hear her saying 'arrrgh' ?


"so big!"

Happy Mother's Day!

This is her pirate beard.

Bothell Landing on Mother's Day:
Summer wanted to climb the tree

Best Mother's Day gift ever - Summer loving the swings again! You've all probably seen her (or video of her) cackling while on the swings. She used to love them! About a month ago, she developed a fear of the swings and wouldn't go on them anymore. Now, we think it's because her vision was getting bad from the tumor. Today, she was having so much fun - giggling away on the swings again!
Summer always has time to stop and smell the flowers - and to make everyone with her smell them too.

mmm...brownies - thanks Casie!

We hope everyone had as wonderful a Mother's Day as I did!

Thursday, May 6, 2010

There's no place like home!

We got home around 1 today, and it is so nice to be back! Summer was so happy to see her animals, and they were happy to see her too.

She is definitely a much happier kid at home than at the hospital. She's been running all over the house, flying her babies around and playing with her toys. She's still a bit clingier than usual, but so much better than she was at the hospital.

She finished her steroids yesterday, so she just came home on pain meds. We're working to ease her off the oxycodone quickly because it's causing some major tummy problems for her. Hopefully she'll be only taking Tylenol soon.

We didn't end up meeting with the oncologist this morning before we left the hospital, but we'll see them during the follow-up appointments scheduled for the next week. Tomorrow, her blood hormone levels will be retested to verify that the one low level has gone back up now that she's done with steroids. Then next Wednesday, we'll see the neurosurgeons to check the surgery wound, and we'll meet with the HemeOnc (Hematology & Oncology) group then too.

Jason's back at work now. We're going to see how the transition home goes over the next couple of days, but I'll probably go back sometime next week. We've been through a lot, so we want to make sure both Summer and I are ready for me to be at work all day.

Wednesday, May 5, 2010

The tumor board results

Dr. Browd and the neurosurgery team just came in and gave us the overview from the tumor board meeting. Summer's tumor is a craniopharyngioma, as they thought. It's a very slow-growing cancer, and the risks for waiting and watching are smaller than the risks for putting Summer through radiation therapy at this age. Because she's so young, there could be irreversible damage to her cognitive and hormone functions from radiation.

The plan for right now is to just watch it. We'll have a few follow-up appointments to check her recovery from the surgery, and an MRI in three months to evaluate the growth rate of the tumor. There will likely be radiation at some stage, but they're hoping to wait until she's older.

If the growth rate of the tumor indicates that we do need to act sooner, there are treatment facilities we can go to in Texas and Boston which specialize in radiation therapy for young children.

We'll be meeting with the oncologist tomorrow to find out more about what the future holds, and then we'll head home to try and resume 'normal' life!

Today's the day

The tumor board is meeting right now, and we expect to hear back from them sometime after 2:30. I'll put up a quick post with high-level results as soon as we know something, and I'll elaborate later.

In the meantime, since Jason's napping with Summer, I've been doing some research. If we go with the assumption that the tumor is craniopharyngioma, everything I've been reading seems pretty encouraging. Here's an article from the Cancer Center at Johns Hopkins:

Tuesday, May 4, 2010

Walking again!

The biggest news of the day is that Summer is back on her feet. She started out a little shaky and is still a tiny bit wobbly, but was walking really well today. We spent some time in the playroom and outdoor park here at the hospital.

She makes me EXTREMELY nervous because I can't bear the thought of her falling and bonking her head while it's in its current state. I'm convinced that they'll be treating both Jason and I for heart attacks before we leave this place. Me for paranoid attacks while Summer is moving around on her own, and Jason for the clogging his arteries must have experienced this last week after all the brownies and fried hospital food.

We met a number of new people today - from endocrinologists to physical therapists and a social worker. We learned that Summer's hormone functions look good (one is low since she's on steroids and will be re-tested later), and that we'll have physical therapy options available if she doesn't recover all of her motor functions on her own right away. I'm guessing, by the fact that she was running on her tip toes this afternoon, that we won't have much of an issue there.

The social worker is here to help all tumor patients and their families deal with what's going on and provide support in a number of ways. She'll follow up with us frequently and even makes house calls to meet with us during Summer's treatment and recovery.

The plan is still to find out more after the tumor board meets tomorrow afternoon, and it sounds like we'll be heading home on Thursday. I know Summer can't wait for that!

We continue to have loads of love and support from family and friends, which we really appreciate. The days go by so quickly here, and the visits we get are a big part of that.

Monday, May 3, 2010

Vision is 'normal' - YAY!!!

Summer saw the ophthalmologist today and we found out her vision is 20/63 - well within the normal range for a 19-month-old! 20/20 is far above the normal range for that age; 20/63 is in the upper third of the range identified as normal. They tested her while she had both eyes open, and will test each eye individually in a couple of months when we come back for a follow-up visit. Her eyesight may continue to improve between now and then, as her brain has a chance to recover from the surgery.

Nothing else new to report, really - her catheter is out, so she's not tied down at all. We went for a lot of walks around the hospital today to take advantage of that freedom. She's not too interested in walking herself just yet, but the remaining IV site is in her foot, so maybe that's not very comfortable for her.

She did stand up on her own for a little while in the hospital playroom to explore the train table. She was a bit unsteady on her feet at first - probably a combination of the drugs and the fact that she hasn't really used her legs for anything other than kicking away nurses in almost a week - but she managed.

We've had some fantastic nurses today. They've been super helpful and very considerate of Summer's stress-level. Not that the others haven't, but these ones have been especially great. I wish we could keep them until we leave.

Speaking of leaving, the doctors haven't given us an anticipated discharge date yet, but said in passing that hopefully tomorrow morning they'll begin taking steps to get us out of here. They've also hinted that we may be home before the tumor board meets, in which case we'll have to come back to find out what they have to say.

Can't wait to get Summer home where she can lay on our own couch with her Bubba.

Monday AM

The steroids are making her pretty darn irritable, and she has a bit of 'roid rage when she's upset. It's especially stressful since she still has various things attached to her that she could yank out while she's angry. We weren't able to get her down to bed in her crib last night, so they allowed us (after signing all the appropriate consent forms, of course) to trade the crib for a hospital bed so I could sleep with her. There was no other way Jason or I would have gotten any sleep last night.

Thank goodness they're going to start weaning her off the steroids soon! They're waiting until her labs are done this morning, and then they'll start reducing the dosage once she's clear.

The neurosurgery team came in to see us pretty early this morning and gave the order to remove her catheter. It's really quite a bulky thing and the only tube still tying her down all day (the rest are only hooked up from time-to-time or at night), so she'll be able to walk and move around a lot easier once it's out.

The other great thing about the catheter removal is that it's a sign of the doctor's deciding she has not developed Diabetes Insipidus (DI) - a condition caused by damage to the pituitary gland, where the hormone telling your kidneys how concentrated or dilute to make your urine isn't produced, causing you to pee a lot, all the time, regardless of how much you're drinking. It's easily controllable with meds, so it was never one of our biggest concerns, but now it's one less thing to worry about.

We will probably be meeting with ophthalmology today, if they can get Summer in, so we should have a better idea of where her vision is later today.

For those of you who aren't on facebook, I hope the link below works. I posted a video of Summer in one of her happy, playful times yesterday. The swelling has gone down even more since then.

Sunday, May 2, 2010

Out of the ICU!

We've been moved out of the ICU to a private room - Giraffe 3025. We are still unable to use cell phones here, but have wireless access as before.

I jinxed myself by writing about how uncomfortable the recliner was in yesterday's post. Summer had a rough night and didn't want to be put down in her crib at all, so we spent the entire night in that recliner. Definitely didn't get much sleep at all.

She's continued to be pretty uncomfortable today, now that all the anesthesia and morphine have completely worked their way out of her system. We'd been trying to keep her comfortable with Tylenol, since that worked yesterday, but it has not been enough today and we've been giving her oxycodone too. When that's working for her, she is a pretty happy kid.

We loved our ICU nurses, but we're happy to be in a private room without Summer having to be tested nearly as often before. Now we can also use the bathroom and shower in our own room, rather than having to go out to the waiting room for the bathroom or upstairs for the shower. Both of us can now stay in the room overnight, so hopefully I'll be able to get more sleep with Jason here to help out. We can also have more than one or two visitors at a time, and can eat meals in our room. Little things, but they'll make the next few days easier.

Summer will probably have a CT scan tomorrow to check that she's reabsorbing the spinal fluid released when they opened the cyst. If she's not doing it on her own, they'll release the fluid with a valve. Not much else to report just yet. Still planning to meet with the ophthalmologist in the next few days and hear back from the tumor board Wednesday night or Thursday.

Saturday, May 1, 2010

A good Saturday

Note: I lied - we can't get voicemail in the ICU. I checked my phone when I got out of the room for a few minutes, and it kept dinging over and over with all the text messages and voicemails. I loved reading and hearing from everyone, but I won't reply to all of them because I'd much rather be in the room with Summer, and I can't use my phone there. 

Summer was back to her old self for parts of the day today - playing peek-a-boo, how big is Summer? and tickling us with her cute little fake laugh. She got to watch a bit of Caillou today on the laptop, so she was very happy about that.

She asked for Jason to hold her several times, so I was up out of the recliner a bit more than yesterday. It is not a comfortable chair, so that is a very good thing! We had a steady stream of visitors today, which made the day go by really fast. Some got to see her completely alert and sitting up, while others only got to watch her sleep on Jason or I.

She was a little grumpy from time to time, understandably, but did well with Tylenol for most of the day and Oxycodone toward the end. The swelling seems to have reached its peak today and is now on its way down, but she's still quite puffy and can't open her right eye.

We had a little incident with the IV this morning where it slipped from her vein and her forearm/hand were flooded with the IV solution. It's not a big deal, especially since she had another live IV site they could use instead, but she had to deal with a puffy arm and hand for most of the day. It's mostly back to normal as I'm typing this.

She's had two IVs and an arterial line removed, so she's down to one IV site which is only being used every 6 hours for administering steroids, EKG monitors on her back, a Foley catheter and a toe monitor. It's nice to have fewer wires for her to get tangled up in.

The doctors are still really happy with her progress, and don't see anything wrong with her urine output or sodium levels. They said on Friday that we'd be moving today, but they figured they'd just keep her here and continue to watch her since the ICU is pretty empty. We will be staying in the ICU again tonight, but should be moving to a regular room tomorrow.