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!

Scarlett's Two!

It's Scarlett's second birthday! 

Two year old Scarlett is the best version of Scarlett yet!  A little about her now: she has unruly dirty blonde hair sticking out of her head at odd angles.  Brandi is dying to cut it.  She sticks her tongue out when she's concentrating or excited (That may be hereditary...).  She's thrilled to be able to crawl anywhere fast.  Her mom's eyes never went away.  She lays face down in the middle of a room the moment she needs a breather.  Her signing hands twist and turn when we talk with her, mirroring her vocal babbling in an exciting pre-language explosion to come.  She bangs on every object, fascinated by the timbre of any drum in arm's reach.  She plays with her voice, making wierd throaty sounds or loud whooping sounds, or stringing together an adorable series of nonsensical vowels and consonants.  She loves school.  At school she watches us as we sing our good morning songs at circle time, she messily macerates her snacks, she gently feeds a baby doll a bottle in speech, and I can practically watch her neurons firing through the one way glass.  She's 23 hard fought pounds and counting.

It's been a difficult two years, and we have looming uncertainties in our near future.  But for now, we celebrate a life we weren't sure would happen.  I am loving getting to know her little moods better as the stay at home daddy.  I'm excited that you and the world celebrate her, and are celebrating her birthday at this year's blood drive. 

Happy Birthday, sweet girl.  Your mom and I love you deep and wide.

Mom made a video of you because she's amazing.

A Healthy Baby

Things just keep on getting wackier here at Team Scarlett Headquarters. Scarlett is crawling full time, getting into everything (especially if it it is dog-related - dog food, dog water, dog's mouth...), I washed my cell phone in a pile of laundry after being puked on (such a glamorous life!), and our laptop bit the dust.  Blood drive planning is in full swing.  We just keep rolling...

Yesterday I had a strange experience.  People say strange things to me all the time regarding Scarlett.  I have had people follow us through stores, cry at the sight of her happy self, ask nonstop questions.  For a while, we had "drive-by prayings" - when she looked sick, with a caved-in head and a feeding tube up her nose, people would just walk by and offer prayers without saying a single other thing.  None of this really bothers me; I completely understand the fascination with an unusual condition, and I am happy to be an advocate for Scarlett and her friends by explaining as much as I can.  However, today it hit me in a completley different way.

It was innocent.  I was casually asked about my daughter.  It came up that her birthday was coming, and I mentioned the blood drive.  This led to the always-awkward question (always posed differently, but essentially the same): What's wrong with her?  I gave the two sentence response, confirmed she is now doing well, and left it there.

A minute later, in an effort to make conversation, this person began explaining that when she was pregnant, she had an amniocentesis, looking for any problems with her baby, and that if they had found anything, she would have terminated her pregnancy.

I wasn't sure how to respond.  I just nodded.  But inside, it stopped me in my tracks.  What exactly was the purpose of sharing her story?  If she had found out her child was as sick as mine has been, she would have given up?  If I had known Scarlett was going to be sick, I could have saved myself the trouble?  I could not come up with an angle that made me feel better.

I know she was just trying to make a connection to a medical issue with a baby.  It's out of the ordinary, something that most people don't encounter, so I don't expect anyone to have a relateable story.  However, to imply, even innocently, that there was a way around my child's condition, that maybe I could have avoided having her, was the first time I have ever felt offended.

There's no right answer to what people should say to me.  "I'm sorry" makes me instinctively reassure others; "That's too bad" seems such an understatement; "Poor baby" makes me immediately respond "No!  She's doing well!".  I don't want her to feel sorry for herself, and that means others not feeling sorry for her, either.  Some days I want to talk about it a lot, sometimes I'd rather not, and I can't always predict what kind of day it will be until it comes up.  I nearly always appreciate the effort, and I know that, even now, I don't always know what to say to someone in a similar situation.

It has become the PC way to avoid discussing the pink or blue question when pregnant to say, "We don't care, as long as it's healthy."  But what if it's not healthy?  What if you do everything right and your baby is still sick?  Is that baby less welcomed, less dreamed for, less loved?

Like all new parents, I hoped for a healthy baby.  I was (and am often still) devastated, as was every other parent I know whose child has been diagnosed with a life-threatening condition.  We did not know about her tumor before she was two months old, and I am eternally grateful for that.  I had two glorious months of getting to know her, learning to care for her, and falling in love with her that shaped and fueled the fight for her life. 

I can't say what I would have done if I had found out about the tumor before she was born, but I hope I would not have given up on her before I even gave her a chance (and everyone's decision in this area is their own - I'm not saying mine is the right answer, but it is my own).  A few doctors refused to give her a chance, and I will always be resentful toward them, no matter how much evidence they had for their opinions.  They were just plain wrong.

If I had given birth to a healthy baby, I would never have had Scarlett.  Her goofy smile, her sweet little snuggles into my neck, her voice calling for me...I would have missed all of that.  Sure, it may have been an easier road - for her and us - but to a completely different child.  All of the nurses, doctors, time in the hospital and that we got to stay home with her have shaped who she is, and the bond between our family.  I will never regret that.

I would have loved a healthy baby, and I hope that we can keep working on getting Scarlett as close to healthy as she can be.  But babies with illnesses, disabilities, and anything not "healthy" are just as magical, just as special and just as valued.  Their parents are just as proud (if not more - we worked hard for that new milestone!) and just as amazed by their new developments, as minor as they may seem.  I wish that every baby could be healthy, but I know that being "healthy" is not the only thing to celebrate.

Scarlett's Blood Drive

We are very excited for our second blood drive!  We already have about 20 appointments filled, but our goal is to fill all 160 appointments!  If you are local (in the SF Bay Area) we would love to see you.  And, since it is Superhero themed, you are welcome to play along - capes, masks, hats...whatever gives you a superpower (we have some fun costumes in the works for Scarlett and our family, so you won't be alone!)

At the event, we will have some wonderful raffle prizes, including...

• 2 tickets to a Warriors game!
• A photography session!
• Gift cards!
• Gift baskets!
• Beautiful handmade greeting cards!

More is being donated all the time, and we are very grateful to be able to offer this to our donors.  Donors will get one ticket, but additional tickets will be available, with proceeds going to the Pediatric Brain Tumor Foundation.  More news on entertainment is coming soon!

If you are not close by, we would love for you to give blood where ever you are.  All of Scarlett's blood transfusions were made possible by donors - kids (and all age patients) in your area NEED you.  If you do give blood at another location, feel free to take a picture and e-mail it (or post it on our Facebook page) so Scarlett can see!

There was a time when we were told Scarlett would never see a birthday, but now she is 2!!!  That's SUPER!!