Monday, November 26, 2012


We are getting ourselves back in order after our Thanksgiving vacation.  We have not traveled at all since Scarlett was born, and in the last week, Chris and I stayed in three hotels, took four flights and packed and unpacked more bags than we should have needed.

Scarlett took her very first flight.  We were prepared for trouble - I asked doctors at both hospitals about safety issues of going through airport security and flying with a shunt; both agreed there should be no problem.  Just in case, I also asked where we should take her if we should encounter a problem (Seattle Children's Hospital was their approved place).  Luckily, we had no problems.  TSA at both Oakland Airport and Seattle-Tacoma Airport let us through with only minimal difficulty.  The biggest confusion we had was with milk: we carry individual boxes of shelf-stable whole milk for feeding Scarlett.  The TSA guard asked me to pour it into a sippy cup...which we don't use.  As soon as I began to explain that she is tube fed, and does not use a sippy cup or bottle, he handed the boxes back and said not to worry about it.  We must have looked innocent enough!

Other than hauling all of our gear through the airport, we had no problems.  Scarlett fell asleep the second the plane started to speed up on the runway.  We took her car seat on board (we have a Radian, which folds for carrying, and used GoGoBabyz car seat carrying strap to make it manageable) so she was comfortable.

Once we arrived in Seattle, we met my sister, her husband and Scarlett's cousin Caleb.  We all stayed in downtown Seattle one night before driving to my grandparents' house further north.  It was Chris' birthday, so we arranged a special treat - he and I got to eat dinner at Sky City, the rotating restaurant at the top of the Space Needle.  Despite the rain (and there was a LOT!), we could see for miles in every direction.  It was beautiful and gave us a chance to recharge after a busy week.

The next day, we had planned to do some sightseeing at Pike Place Market, the Ballard Locks and the original Starbucks (while Chris still gets a discount!).  Unfortunately, we were caught in one of the biggest rainstorms in recent memory - streets were flooded, freeways were clogged with traffic and the idea of getting in and out of cars with two wet babies quickly lost its appeal.  Instead, we decided to do a toddler-friendly activity - we visited the Seattle Aquarium.  Scarlett and Caleb loved the touch ponds and watching all the fish swim around.  We all enjoyed walking around while staying dry.
A diver answered questions from in the big tank.

Scarlett loves fish!

That evening, we drove the 100 or so miles to my dad's parents' house in Sedro-Woolley.  It's a tiny town, and their house is way outside of town, on a hill near the Skagit River.  We spent the next few days visiting.  When my grandparents needed a break from babies, we went to the mall, where there was a great play space where we could let them explore.
The best baby entertainment at Nanny and Papa's house: the stairs!  They both climbed up and down as many times as they could.

For Thanksgiving, we cooked all morning, then enjoyed a wonderful meal with family.  Scarlett ate a ton, and particularly enjoyed candied sweet potatoes and pumpkin pie.

By Friday, we were all ready to get back home.  We left early in the morning to make our flight.  We flew back with both babies - I'm sure everyone waiting for the flight was terrified of us!  Luckily, both kids were pretty good, and we all got home in one piece.

Now I'm back at work and Scarlett is back at school.  We are waiting to hear back about scheduling her surgery, which will seriously impact how the rest of this holiday season is spent around our house.

Thursday, November 15, 2012

The Beginning of a Plan

After a very long day, we met with Scarlett's neurosurgeon today.  He again showed us the images of what we are dealing with.

He said it very simply: Let's just get this out, and then worry about it.  He is just as disappointed as we all are to see something growing, but admits we just don't know what it is, and we can't make a wise decision on treatment until we know.  His biggest concern at this point is the risk of infection; he estimates that 1% of craniotomies (surgery to open the skull) get infected; shunts increase that risk, and we all know that Scarlett has a way of attracting conditions with even the most minimal risk.  The last thing we want is her shunt to need to be replaced - this shunt is a winner!

So, Scarlett will be scheduled for surgery shortly after we return from our Thanksgiving trip; I expect it will happen before Christmas.

It was a full day of talking Scarlett.  This morning, I spoke at the breakfast for the super donors of the Stanford Blood Bank - those who have donated 100 or more times.  Our blood drive coordinator suggested us as a speaker, and we were happy to share our story, and to thank the wonderful donors who commit their time and arms to donating every opportunity they have for several years. The blood bank supplies the hospital where Scarlett had all her chemo and countless transfusions, so it is highly likely that someone there donated blood that saved her life. The blood center was kind enough to put us up in the hotel the night before so that we would not have to battle traffic early in the morning, so Chris, Scarlett and I had a little night out before our speech.

Now, we have a few days to pack before we take Scarlett on her first flight to visit her great-grandparents in Washington.  It will be an adventure for sure!

Monday, November 5, 2012

Wait and Wait

We heard from neuro-oncology today.  Scarlett's case was discussed at tumor board - a team of doctors from oncology, neurosurgery and other specialties that consult on all the brain tumor patients - and they overwhelmingly feel that we need a biopsy before we can effectively treat whatever this is.  Because this growth is not behaving like the type of tumor she had before, they don't want to jump to conclusions and treat with the big guns (radiation) unless it is absolutely necessary.  A biopsy, where her neurosurgeon could remove at least a portion of the growth and send it in for analysis, would give us a much more specific target to shoot for.  If he can get it all out, and biopsy shows it is lower-grade than the previous tumor, then she may not need any further treatment.

The neurosurgeon hasn't gotten back to anyone yet, so we're still not sure what his take is.  If he thinks he can safely get to it, he will remove whatever it is soon, and we will determine next steps based on biopsy results.  If he thinks it is too small, we will likely wait two months for another MRI.  If there is continued growth, the biosy moves forward; if no growth, we wait another three months.

Waiting is my least favorite option, even though it is the easiest on Scarlett for the time being.  It feels powerless, and I prefer to feel like we are in some kind of control here (though, really, we never are.)  The doctors will make their decision based on the best information they have, and we have to trust that they know the best road. 

Either way, Scarlett is still her wild little self.  She has recently learned to go down the two steps from our kitchen to living room; today she worked really hard to go up those same steps with just a little help.  There is just no containing her anymore.  She also got her second haircut this weekend.

This weekend, Chris and I will attend our first pediatric brain tumor conference.  The Pablove Foundation is hosting their first Pediatric Brain Tumor Symposium this weekend at Children's Hospital Los Angeles.  We were lucky enough to be able to get a scholarship through the foundation for a hotel room at the JW Marriott LA Live, so it should be a great weekend.  Scarlett will stay home with Grandma and Grandpa, so it will be our first baby-free weekend in two years, and the first traveling we have done in many years.  It's not much of a vacation from our stresses, since we'll be talking brain tumors all weekend, but we will enjoy it nonetheless.

Thursday, November 1, 2012

The Bad, The Good and The Unknown

It's not nothing.

Two months ago, Scarlett's routine MRI showed a mystery spot.  There was some hope it was a blood vessel.  Turns out it isn't.

Today we met with her neuro-oncologist.  The new MRI shows that the mystery spot has grown.  It is about the size of  - which food is good for this?? - pumpkin seed, maybe?  A few grains of rice in September, a few more grains of rice now.  It is only visible on 2 of the many slices of MRI images.  In essence, tiny, growing slowly, but definitely growing.

There is some bad, some good, and a lot unknown.

The bad is that after over 18 months of being tumor free, Scarlett once again has an active brain tumor.  It is crushing to write this, devastating to hear, and horrifying to think about.  It feels like everything we did - 12 months of chemo, losing her feeding skills, tubes, shots, extra surgeries - was a waste.  It may be what has staved this off so long, but it still feels like we tortured her, and left life-long deficits, for something that didn't work.  As far as I know, Scarlett is the only one of the kids with this same brain tumor in our little group (about 7 of us) that has had a recurrence.  Recurrent brain tumors are typically more challenging to treat because the first round of treatment obviously did not work; we have to attack it in a different way.  However, every case is different, especially when the tumor is as rare as this, so we proceed with only Scarlett in mind.

As difficult as this may seem, there is some good.  We are currently at the "best case scenario" stage: the growth (whatever it is - more on that below) is so small, it may not even be able to removed yet.  It is small enough to be treated as is by CyberKnife radiation, which would have few, if any, side effects, and is likely to stop the growth in that area.  We are still learning about the different types of radiation, but her doctor feels like the CyberKnife option is the least invasive, most effective and easiest on a toddler (she thinks it would be just one session on one day.)

The composition of this mystery spot is unknown.  It is at the base of the old tumor - the part that was most vascular, the hardest to remove, and where the tumor likely originated when she was developing in utero. It is growing very slowly, which hints at it being something other than glioblastoma multiforme, which is a severely aggressive tumor that almost never grows slowly.  It's possible it is a later maturation of the same tumor - some new iteration of the few cells that may have been left behind in the first surgeries, that has survived all the chemo, and that has developed a mind - and growth pattern - of its own.  We won't know the exact make up until (or unless) it is surgically removed and biopsied, which may be a while, since it is so small.
Tomorrow, we take a disc of the MRI images to her neurosurgeon in Oakland.  He will decide what he thinks can/should happen from a surgical point of view, and then discuss with neuro-oncology in Palo Alto.  On Monday, the hospital holds their weekly Tumor Board, where the team of doctors and specialists confer about all the active cases and decide a plan of action.  We should hear their plan Monday afternoon.  The plan may be to wait for it to grow a bit more - not my favorite option.  

Until then, we just forge ahead.  We are still keeping our holiday travel plans, still working full time, and still planning to keep her on her schedule of school and therapy as much as we can.  I am surprisingly composed.  I guess I am not really surprised - it just seemed time for some kind of interruption in our life.  I have been out of my mind the last few days, distracted and easily upset.  We have been short with each other, and just felt the cold wind of disaster coming our way.  I had what seemed like hundreds of scenarios playing in my head - why they hadn't called, why they would call, what they would say when we got there, what every little clue or gesture really meant.  In the end, our appointment was calm and reassuring.  As always, I have my full trust in her team of doctors; they are 100% on our team.  As much as we all wished she would continue to be tumor free, we knew all along that this was a possibility - these tumors do not go away without a fight.

The brightest spot is that they are BLOWN AWAY by her recent development.  Her doctor was taking her own videos of Scarlett crawling just so she could share it with everyone else.  If you didn't know to look, you would never guess how much this little girl has survived.  This tumor picked the WRONG kid to mess with.