Scarlett's Christmas

Now that we have put away most of the wrapping paper and bows, here's how Miss Scarlett spent her Christmas...

We finished the last of our shopping on Sunday, amidst an incredible rain storm that caused flooding and chaos everywhere we went.  However, Scarlett was a trooper through both Costco and the grocery store, and kept herself entertained with whatever she could reach from the cart.

Playing Christmas Jedis with grandma.

On Christmas Eve, we decided to take advantage of smaller crowds and visit a museum exhibit we have wanted to see (we bought the tickets months ago and only had another week left!).  We headed to The Tech in San Jose, where they have a special Mythbusters exhibit, with props from the show and recreations of some of their most memorable experiments...including their giant Jaws shark.

That night, we had a big group over to eat way too much delicious food, do a White Elephant gift exchange and go to church.  My job was dessert, and I made this awesome, easy cake that I found on Pinterest.  It's Betty Crocker's Pumpkin Prailine Cake, and it was quite a success!

Christmas morning, we opened presents.  Scarlett was not too sure what was going on, but once she was able to dig into a few new toys, she was all to happy to rip up the next one.

Her favorite gift from Santa was a new scooter bike, which she wants to ride as soon as she wakes up in the morning, and any time she sees it.

New magnets!!

Her stocking had Crayola Color Bath Drops that make the bathwater a little more fun.  She is just transitioning to baths in the tub from the kitchen sink.

As usual, she was showered with wonderful gifts, including some new clothes and books.  She's a very lucky girl to be loved by so many people.

Mommy and daddy didn't do so bad, either; I got a new camera that I am very excited to learn to use (and you, my dear readers, will benefit from my better pictures!) and Chris, who asked Santa for an "interesting experience," was treated to dinner at Opaque in San Francisco, where diners eat in complete and total darkness.  All the servers are blind or visually impaired, and lead guests through the dark restaurant, where you have to rely on your other senses to enjoy your meal.  We saw it on the Travel Channel many years ago, and wanted to try it out, especially now that we have a child who has some visual impairment.  The food was great (Chris ordered all "mystery options," so he had to figure out what he had as he ate it), and we were happy to leave without having spilled our drinks at all.

It was a great holiday, and it's not over yet: we leave early tomorrow morning to visit Chris' mom near Lake Shasta.  When we get back, we will have a quiet New Year's Eve at home, and then start preparing to get back to our real lives...Scarlett has doctor's appointments and MRI next week in preparation for her first chemo on Jan. 11.

The best gift: a box full of packing peanuts.

Merry Christmas!

We hope everyone is having a wonderful Christmas!  Scarlett is napping after digging into her stocking, eating a delicious brunch and then opening more presents!  Mommy is exploring the manual for her brand new camera, and daddy is...well, I think he's asleep, too.  Enjoy your family, eat something yummy, and stay warm!

Surgery #14

Yep, that's right.  Scarlett will go in for her 14th surgery tomorrow.  But let me back up...

Monday we met with Neuro-oncology at LPCH.  We are all dismayed that we have to have these discussions again, but we were glad to get to sit down with the doctors that know Scarlett so well and hear their thoughts.  

They have not yet seen the pathology from the tumor removed, so their assumptions are preliminary based on the first look from the surgical pathologist.  Everyone is expecting that this is the same tumor she had before.  We asked how this new spot came on so slowly after so long; they said their guess is that one or two rogue cells were left behind in the first surgeries (as the surgeon always told us could happen, which is why she needed all the chemo in the first place).  The super-speed duplication of those cells was staved off by the chemo, which ultimately may have changed the core biology of the tumor.  Now that she has been off chemo for several months, those cells were able to begin to multiply, though at a much slower rate than what we saw in the original tumor.

The doctors are expecting to see somewhat good news from this pathology - that the tumor cells have been altered in a way that makes it much less destructive, and easier to control.  Less likely would be an equally aggressive tumor as the original, which would be much more difficult to manage.  Worst case scenario, which no one expects based on the behavior we have seen over the last few months' MRI, would be the pathology shows this to be an even more aggressive version that would be nearly impossible to eradicate; treatment would be of little or no use. 

Somewhere in there, we found our hope.  We are not done yet.

As we expected, they had a plan that was vastly different from what we were told at CHO.  They feel that there are basically 3 options available.

Option 1 (LPCH's choice) is to begin a new chemo regimen.  It would include all new drugs from what she had before, more similar to what is given to adults with this same tumor.  It would be much less intense than what she did before - no (or very few) hospital stays, no blood transfusions, much less severe side effects.  They estimate about 10 months of infusions every 2 weeks.  She would still be able to attend school as long as she felt up to it, and could continue therapy and most all of her normal routines.

Option 2 (CHO's choice) is high dose chemo with autologous stem cell transplant.  This plan would have her in the hospital for several weeks as she got a lower dose chemo to prepare her body, then had stem cells retrieved from her bone marrow.  Then, she would be given an incredibly high dose of chemo - I saw it compared to getting six month's worth in a single dose.  That drug would completely erase her immune system, as well her hair, digestive system, could damage her skin, heart, kidneys, liver, and would require several blood and platelet transfusions....and hopefully kill the cancer cells.  Once she began to recover from the chemo, the stem cells would be given back to repopulate her now-erased immune system with her own cells. 

Because she would be so dangerously weakened, she would be in a specially-filtered hospital unit, protected from all possible germs.  Depending on how long it took for her to recover, she could be there for weeks or months.  She would not be able to continue at school or therapy.  Further developmental delays could present.  The risk of death from the sheer toxicity of the chemo is high.

The final plan, which neither hospital prefers, is proton radiation to the tumor bed.  This would be done at a hospital that offers proton to children...in Boston, most likely (quite a ways from our home in the Bay Area).  Proton radiation is a highly-targeted to be as minimally damaging to surrounding tissue, but some radiation scatter cannot be avoided.  Particularly for Scarlett. this presents a danger based on the location of her tumor, which is very near some of the most vital parts of the brain (as if there are any unessential parts!)  She could sustain some even further delays in cognition and learning potential, and the long-term effects are still widely unknown.  It is generally considered a non-option (at least to our doctors at both hospitals, and many I have read/spoken with) to radiate a child under 3 in most circumstances because of the damage it causes to the still-developing brain.

We listened, asked tons of questions, and talked through what the ramifications of each decision.   By biggest concern is no longer what we do now, but what options we have down the road - I want a plan A, a B and a C so I know that there are still roads to be taken.  There were several very compelling issues, and we tried to be as objective as we could. 

There was one statistic we could not ignore: the survival rate for children with recurrence with all these treatments is around 20%.  We have to hang on to the hope that Scarlett is the one child in five who will pull this off.

With no decisive difference in survival rate, we decided that we want to impact her daily life as little as possible; she deserves the absolute best life she can have, and the hospital - no matter which one - does not offer that.  So, we have decided to begin the less-intense chemo plan at LPCH with the same doctors who have been overseeing her care for the last two years.  It is immensely helpful to us to stay with the team we have trusted all this time; seeing their interactions with Scarlett on Monday only cemented that feeling for me.  They laugh and smile with her, tickle and play peek-a-boo and know how awesomely wonderful she is doing right now; they have celebrated with us, and now are digging their heels in along with us.  

Her new chemo will begin sometime during the second week of January (she is already on the schedule to regularly have appointments on Fridays so that it does not impact her school schedule.)  This gives us a few weeks to get mentally prepared for more chemo, even if it is not going to be as bad as before.

Now for that surgery: she needs a new port placed before she can begin chemo.  Ideally, her head would have at three weeks to heal before chemo, and a port would have two...which means it needs to be in ASAP.  With the holidays upon us, the schedule for "elective" surgeries like ports (not an emergency, but necessary) is incredibly limited - in fact, so limited that tomorrow is the only option.  She is not even on the surgical schedule, so Chris and Scarlett will essentially be on stand-by at the hospital early tomorrow morning waiting for an available surgeon and operating room.

Crazy as it seems, surgeries like port placement just doesn't worry me that much.  The idea that she needs one is upsetting - we just got rid of the old one! - but I'd rather she have a port than need IVs in her arms and legs.  I have to be at work tomorrow, having a holiday cookie-decorating party with my kindergarten class while Scarlett is (hopefully) having surgery.  The hardest part for Scarlett is that she will not be able to take a bath for a few days - she just got her first real bath after the last surgery.

I can't say we are excited, or happy, or frankly, even incredibly optimistic.  There is still so much unknown, and until we know more, we will just get through each day.  We are calm, and we are okay for now.  We see this amazing little girl growing and changing before our eyes, and we are ready to fight for her.  Again.

And that amazing girl is where I want to end - it's been a while since I have given her stats.  Scarlett is now 26 months old.  She is 24 pounds.  She outgrowing 18 month-sized clothes and size 4 shoes.  She crawls full speed in every direction, and get from her back to her stomach to kneeling to sitting to standing with no problem.  She can stand up at a moments notice.  This week, her teachers were thrilled to report that she was clearly signing "more" during snack time; she started do it at home, too.  She seems to know what "gentle" and "no" mean now, too.  She has started cruising the furniture while standing.  She laughs hysterically when we eat anything from her hand, and when we tickle her, when we blow raspberries on her tummy and ... well, she laughs all the time.  She is determined to play in the toilet - not particularly fun for us, but blissfully normal behavior for a kid. 

Early Days

For those who have not been with us since the beginning, here are some of the posts and pictures from two years ago.

Discovery

2010

Whirlwind

A New Phrase

Dec. 17, 2010:  First CT, when we thought it was a big misunderstanding.  We laughed as we took this picture with Chris' phone.

Dec. 24, 2010: The day after we were sent home to wait for a call from hospice.

Dec. 27: A few days before going in to have first tumor removed.

Jan. 3, 2011:  Two days before surgery.

Jan. 4, 2011:  The night before the first big surgery.

Jan. 7, 2011:  Touch and go after the first surgery.

Jan. 23, 2011:  Waiting to go home after nearly a month in the hospital.

Tumor-versary

Tomorrow we will walk into Lucile Packard Children's Hospital for what feels like the 500th time.  We will smile to the valet who recognizes us, wait patiently as others try to figure out the security badge requirements (though we just slide our IDs, and our badges print out); we'll peek in on the Bass Center, where all the kids receiving chemo are safely sequestered behind heavy doors, and walk into the oncology waiting room, where we have spent hours waiting, chatting with the office staff.  It's a familiar, comfortable and reliable place for us now.  But it was not always that way.

Two years ago tomorrow, we did this for the very first time.  We drove into the parking lot, jumping out of the car before my mom had a chance to park.  It was dark, and the hospital was lined with lights, including the large animal topiaries that sit out front.  We ran into the entrance, soaked from the rain, breathlessly asking the security guard where we would find our daughter, who was brought in by ambulance.  The signs, filled with unfamiliar abbreviations like NICU, PICU, PACU, Hem/Onc, led us to her.  We were overwhelmed, nervous and downright scared.

That night, we were shown, for the first time, the massive tumor that was killing our child.  The first sight of it was on a neurosugery resident's iPhone, accompanied by the now-infamous "impressive".  That night, Scarlett had her first CT scan, her first MRI, her first IV, her first anesthesia and her first night in a PICU.  Looking back, I could never have imagined how routine those things would become.

That night, Chris and I were also accused of child abuse.  As far as we have come, I can still never shake the horror of being suspected of something so heinous.  The doctor who reported us and the social worker who interviewed us were just doing their jobs - they were not skilled at reading CTs, and when they saw what they thought was bleeding, they reported it, just as I would as a teacher if I had a student who came in injured.  Nevertheless, I wish that the system could have been flexible enough to avoid the many phone calls and the home visit we had to endure later that week.

Over the next few days, we were told very plainly that our daughter was going to die.  We were told exactly how it would happen, and what we would see along the way.  We were given a time frame of a few weeks, maybe a few months.  There was absolutely no hope.

We know now that there was a chance.  Scarlett was always meant to be much more than a statistic.

Since then, we have changed.  We have learned so much, both encouraging and harrowing.  We know the signs of increased intracranial pressure.  We know how to give injections at home, how to handle chemo without exposing ourselves and how to identify the need for blood transfusions.  I can watch someone vomit without even blinking an eye, and clean it up, too (this particular skill has already been tested by my kindergarteners).  We have learned that we can handle an inordinate amount of stress and still laugh together.  We  know each others' strengths, our breaking points and how to rely on each other in a way we never had in the first 9 years of our relationship.

When we walk into that hospital tomorrow, I will go with hope.  I will go knowing that she has overcome so much, and continues to amaze us every day.  I will walk in with confidence in the doctors who have worked so hard to save her life, and faith that they will continue to fight for her just as we have.  I go there with all of the experience we have gained in the last two years, both of the good and the bad, and knowing that as hard as it will be, we will make it through.  We have done it once; we can do it again.

Recovery

Miss Scarlett is home again.  She was completely stable for the last two days, has been off morphine for more than 24 hours, and is tolerating meals.  The PICU and neurosurgery staff felt that there was nothing they were offering that we could not handle at home (or get to the hospital in time to handle).  Since we are pretty experienced at handling neurosurgical recovery at this point, they don't hold her inpatient for the sake of observation.  They trust us.  So, they packed us up with some at-home pain medication, and sent us on our way.

Brain surgery to home in less than 48 hours.  Not too shabby.  She is still very drowsy, and has yet to tolerate being put down, but no one here is arguing with her.  Hopefully, we'll be able to downgrade her to the regular Tylenol tomorrow, and then she will be back to her trouble-making self in just a few days.

We will be taking it easy at home for the weekend.  We never expected to be home this weekend, so we have no plans, no obligations.

Last night, and again this morning, the neuro-oncology team from Children's Oakland came to speak with us, as we requested.  One of the doctors we met at the Pablove conference last month consults in Oakland 2 days a month, and that just happened to be yesterday and today.  He has very strong feelings on what the next steps would be, so we asked some preliminary questions, and have that information to consider.

Monday we meet with her primary Neuro-oncology team at Stanford.  I hand-delivered discs of her latest MRIs to them in Palo Alto this morning, so they will discuss her in tumor board, and then meet with us directly after.  I am not sure what their plan of attack will include yet, but I have a feeling it is going to look very different than the option already on the table.  I am having a hard time considering anything that would eliminate the team who we have relied on so heavily for the last two years.  They know Scarlett better than anyone outside of Chris and me, and have been with us through hell and back.  I can't imagine going forward without them.

I am not sure how we are supposed to make a decision like this.  I am sure we will find something that convinces us in one way or another, but it's all too big to conceive of right now.  We are currently scouring the internet for articles, journals or anecdotes of infants with recurrent high grade glioma.  Luckily, I guess, there isn't too much to sift through that we haven't already seen or heard about.

Everyone agrees on a few things.  They all want us to "enjoy" our Christmas, and not try to make too many decisions before then.  But the flip side of that, which they also agree on, is that we don't have long to ponder; if the tumor that was removed continues the observed growth pattern since September, it will basically double every 6 weeks or so.  It would be ideal to start treatment before any significant growth occurs (existing tumor is the main factor in success rates; less tumor to stop gives a decidedly better outcome).

So, we have about 3 weeks.  By the first week of January, she will be in some new treatment plan that will send our entire world into a tailspin yet again.

Starting Over

We're settling in.  Scarlett is recovering well.  She is still on round-the-clock morphine, but we are working on weaning her to Tylenol.  Last night, she got pretty feisty, kicking her catheter line out several times (requiring full bed changes), pulling off the bandages on her head, and eventually wiggling free from the arterial IV line, the one that took over an hour with three anesthesiologists to place in surgery yesterday (the anesthesiologist later came to tell me it was her most difficult IV placement.  Ever.)  She finally settled down and I fell asleep around 11, to then be woken at 2:00am to be moved to a different bed spot in the PICU.  I groggily carried my bedding across the unit to the quieter, more spacious side, and settled back in on the squeaky sleep chair.  Around 5, they decided to draw labs, but they couldn't get any blood through the remaining IVs, so I awoke to Scarlett screaming as they pricked her toe and heel to get enough.  At 7, rounds began, so I was on deck to talk with doctors and get the plan for the day.

This morning, Scarlett had a follow up MRI to make sure every trace of tumor was removed.  We haven't seen the surgeon yet, but we heard he came through the PICU while we were out and told the nurse it looks good.

We are in a daze.  As much as we thought we were prepared for new tumor growth, I am finding myself at a loss for clear thoughts.  I am sure the fatigue is partially responsible, but I can hardly keep my mind focused on one thing.  We spoke with the neuro-oncology nurse practitioner who has been with us from the beginning.  She is in communication with the surgeon, and they are already working on getting scans sent over to have on hand.  She wanted to check in on us, and to let us know that there are still many options.  Hearing the details, though, hit home.

She suggested we push to have a port placed back in Scarlett's chest if she continues to have IV problems.  If we're going to need it anyway, we might as well save her pincushion experience and do it while she is already in the hospital.  And then she stopped short to say she was assuming we wanted to proceed with treatment.

Is there a choice?  I know there is, though I can't imagine choosing to give in at this stage.  Yes, we will proceed with treatment.

She did not mention any specifics, but that we will have to wait at least 2-3 weeks for Scarlett to heal from this latest surgery before proceeding.  She asked about my work schedule, when my vacation begins and when we can come to Palo Alto to talk further.  She said we will have to look at balancing aggressive treatment with quality of life. 

Quality of life.

How did we get back to this place?  How is this happening again?  I was so sure, so convinced that we had left these questions far behind.  She has been doing so incredibly well.  Two years ago (almost exactly, as it happens) we were faced with these questions, and there was no time to decide.  Plans were made faster than we could blink, and it made things easier to not have to think about it.  Now, we know so much more...we know the challenges of treating Scarlett, the challenges of bouncing between hospitals, the risks of infection, of further developmental delays and of permanent damage from treatments that may only give her a short time before we are right back where we are now.

I know too much.  I cannot forget or ignore what I have seen, read, and learned over the last two years.  I have seen countless other families be faced with watching their children, their babies, die in their arms.  Keegan, Jessie, Bree, Talon, Zac...all gone this year, and they are just a few.  I have read about their last vacations, their last days and the emptiness of the days, weeks and years after.  I can hardly swallow, hardly breathe when I think about facing that with Scarlett.  Not after everything we have been through already.  The image of her slowly fading before my eyes continues to flash through my mind, and I can't help but cry.

This is not fair.  Not for anyone who had done it before us, not for us, not for me.  Not for Scarlett.

Our plan is to meet Monday, pending Scarlett has been discharged.  Hope is not lost - there are options.  We will learn more about them and make some decisions soon.  Scarlett's case will be discussed at tumor board at two different hospitals, including doctors consulting from even more hospitals.  I have already asked for any information available from the Pediatric Brain Tumor parent group, the biggest network of parents I have found for learning about the most recent research, treatments and approaches from around the world.

My greatest fear is that this is the beginning of the end.  It's a premature thought, and I am not giving up.  But I can't deny what I have seen.

Surgery #13

Scarlett is out of surgery, headed to the PICU for recovery.  We just spoke with the surgeon.  Here's what we know right now:

Getting an arterial IV line in her was very difficult, so it took an additional few hours.

The entire growth was removed, including some of the adjoining tissue that might harbor rogue cells.

The pathologist looked at a sample.  The initial impression is that we are again looking at glioblastoma multiforme (GBM).  Official diagnosis results will come in the next few days, but it is definitely some kind of tumor.  I have some particularly colorful words I could add here, but I'll keep it PG-rated for now. 

While they had her opened up, they used a mesh to help repair some of the unhealed soft spots on her skull.  This will hopefully help them heal stronger.

They expect her to be ready to go home Sunday or Monday.  

Her doctors at LPCH at Stanford are being informed, as well as samples sent soon to start developing their plan.  Her case will also be presented this Friday to a doctor we met at the Pablove conference in LA last month, who consults at Children's Oakland.  Basically, everyone is on it, and we should have a plan (or likely, a choice of plans...) soon.

We are pretty tired after waking up at 4:30am and being anxious all day.  I will be staying the night in the PICU tonight while Chris goes home to sleep.  I am hoping we can keep her more comfortable with pain medication this time.

Thanks for checking in on us.  I'll continue to update as we learn more about this new phase.

Keeping Busy

Scarlett was taken into surgery around 9:30 am PST.  It's nearly 11, and we have not yet heard that the actual surgery has begun - they are still preparing, setting IVs and breathing tubes, etc.  The OR nurse will call us soon.

The neurosurgery team took on a very short case before Scarlett's, so we were delayed a bit.  It made for a very long morning, but everything went according to plan.

We signed consent for "brain tumor resection."  Seeing that instead of biopsy was a bit jarring - we've been avoiding the idea of a new tumor as much as we could, but I guess the doctors aren't.

The only question I had for the surgeon this morning was how much change was evident on yesterday's MRI compared to the last imaging in October.  He said very little, if any change.  This gives me a bit of hope - still very slow growing.  His words: "We're just going to get it out of there."  I can get on board with that.

Scarlett did not sleep well last night, so by the time it was finally time to go into surgery, she was pretty cranky (but who can blame her, right?)  As we handed her off, we told the surgeon that she was just too excited to see him again...he laughed and said, "Well, I got plenty of sleep."  Sounds like it will be a good day for him.

For now, Chris and I are camped out in the hospital cafeteria with computers.  Part of my plan to keep my mind busy while we wait and wait is working on changing some of the blog elements.  If you see random changes, please be patient with me!

More to come...

Getting Ready

 

Scarlett is getting ready for her surgery tomorrow.  She, of course, has no idea what is coming.  This morning, she had the pre-operative MRI that maps her brain for the surgeon.  This includes the placement of fiducials, 7 little buttons glued to her head, that will help guide the neurosurgeon in placing her head exactly right to find the tiny spot to be removed.  He calls them his GPS.  We learned today that Scarlett is the only neurosurgery patient tomorrow, and we should expect 6-9 hours in the OR.  Seems like an awfully long time for such a small spot, but, hey, it is brain surgery - we want him to take as much time as he needs to do it right.

We are holding up okay.  It has been a stressful few days preparing for the long days and nights ahead.  I will be out of my classroom for 4 days (or so I am planning - there's no telling what will be happening next week).  4 days of lessons plans for kindergarten is a big job - they need to stay busy!  My great colleagues are being wonderfully helpful, and I am trusting that my class will be fine.  I'll be back just in time to enjoy some last minute holiday fun with them before our long winter break.

Chris has been running Scarlett to school and appointments and taking care of all the paperwork and details before surgery.  While he was at the hospital today, he filed a request to have a slide of tomorrow's biopsy released to her doctors at Lucile Packard at Stanford so that everyone can work together (we hope) on the most reasonable plan for Scarlett.

Tonight, we are taking it easy, trying to relax.  We have to finish packing - I could pack for the hospital with my eyes closed by now - yoga pants, tank top, t-shirt, sweatshirt, socks, slippers, ear plugs, headphones, fleece blanket.  Laptops and Kindle and hospital requirements.  There's not much room for more than that.  Chris and I rotate each night, one staying in the hospital overnight while the other gets some semi-quality sleep at home.  We know the routine, which table we will scout out for its convenient electrical plugs in the cafeteria as we wait tomorrow.  This time we had the luxury of time before surgery - many have been in emergency situations with no warning -  so I was able to make a little treat to share with the PICU nurses that always take such good care of her (and us).

Scarlett is NPO (no food) after midnight.  We have to be at the hospital at 6:30am, so with a coffee stop on our way, we'll be out the door long before the sun comes up.  Surgery is scheduled to begin around 8:30am PST, and we will update as much as we can.

Thank you all for your support throughout this difficult time.  For now, Scarlett is working off the last of her energy for the day by climbing on and through the step-ladder we have used to decorate the house...

 

Scheduling

Well, it took me 4 days to get a chance to type out a post about what is happening right now.  As I went to change the font - the very last step - everyone's favorite blonde troublemaker leaned over to bellyflop onto the keyboard, deleting my highlighted text.  Therefore, the long story of our scheduling chaos is gone.

To prevent this from happening again, here's the short version: Scheduling all of these doctors just plain sucks.  Several doctors have rescheduled appointments lately, which makes it harder.  Scarlett has a cold, so with all the extra appointments, she has had to miss several days of school.  The end.

More importantly, Scarlett is scheduled for surgery next week, on Wednesday, 12/12/12.  Hopefully, her neurosurgeon will be able to remove the entire mystery spot, and we will get some answers on what we are dealing with here.  They expect her to be in the hospital for 3-5 days, depending on how her body handles it all.She will have a "stealth" MRI the day before to map out the surgical zone.  He may or may not deal with some of the cranial bones that are not healing properly.

That's pretty much it.  We have the house nearly Christmas-ized, since we will be gone for most of the next week.  As stressful as it is to manage all of this, it's hard to be too upset when there is a smiley little girl around.

Whew, at least I got that typed before she dive-bombs me again!

Thanksgiving

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.

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!

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.

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.

Scarlett's Birthday

I think we may have finally recovered from Scarlett's epic birthday week.  

On her birthday (Oct. 16), we visited the pumpkin patch.

Mommy made a special superhero 2 shirt!

 

 

Cousin Caleb came with us.  Getting these two monkeys to look at the camera was a losing battle.

Good enough.

 

We opened presents.

At school, she shared banana bread cupcakes with her class (well, other kids got their own...she was not sharing hers!)

We have found that her recommended eye-patching goes much smoother when there is food to distract her.

 

Definitely a big fan of cake.  Frosting helps.

 
Saturday, the Superhero Blood Drive took flight...

It was cold and cloudy most of the morning, but the sun came through eventually!

 

Our superhero photobooth didn't survive most of the day, but it made for a few good shots!

Thanks to our friends, readers and community, we had a great raffle that raised almost $400 for the Pediatric Brain Tumor Foundation.  We gave away handmade scarves by local artist Karen Taylor, a hand-blown glass pumpkin from Erickson Arts, Disney Blu-Rays and a photography session with JRo Photography thanks to my friend Laura Mojica and her family,  movie tickets, a Target gift card thanks to reader Debbie, Golden State Warriors tickets from Jane Chisaki, a quilt handmade by Meredith Johnson, cards handmade by Kris Adams, fun baskets from Lindsay Affleck, a Scentsy warmer from reader Hillary, a Raiderettes calendar autographed by my friend Kelly and her friends, and a few other fantastic things that I can't even remember.  The winners were really excited to get these fabulous gifts - people have been asking me all week if I am SURE they didn't win.

Stanford's Bloodmobile bus was on-site to help alleviate the long lines we had last year.

Besides the bus, these chairs inside were full most of the day.  We ended up getting about 90 units of blood collected for patients in local hospitals.

A local bicycle club  Kruz3r Mob set up this awesome art auction and raffle, plus had their custom bikes on display and brought a DJ friend along with them.  In the afternoon, the advanced choir from our high school - where Chris and I became friends - came out to sing a few songs and Happy Birthday to Scarlett!  They made our party an event, and we were so happy to have them all!

Scarlett's grandpa won this neat piece in the art auction, inspired by Miss Scarlett (see the cute patch on the head where her scars are?!)  It was made on a piece of a skateboard.  I'm pretty sure it will be a part of our home's art from now on.

  

Scarlett's birthday cake was fantastic thanks to our friend Jennifer Jones, and matched her (mommy-made) costume perfectly!  With sandwiches donated by our favorite local diner, Dino's Grill, we all had plenty to eat through the day - including the awesome nurses who stayed all day drawing blood.

She dug right in...

...and it was delicious!

Mommy and daddy gave blood early, without passing out!  And yes, I made those t-shirts, too.  Blood-type superheroes!

Overall, it was a wonderful day full of friends and community support for our family and patients all over the Bay Area who will be benefiting from the blood donations.  We are so grateful to everyone for coming out and supporting us in this endeavor.  It means so much to us to be able to give back a little to those who need it, and to bring together our community in support of a cause so close to our hearts.

On Tuesday, Scarlett will have her next MRI to further investigate the "mystery spot" that was found 8 weeks ago.  We are very nervous, but have firmly planted our expectations on the positive side.  We have made vacation plans for Thanksgiving, including Scarlett's first airplane ride.  I will update with news as soon as we get it - probably not until Thursday at least.  In the meantime, expect some Halloween costume cuteness!