Round 1, Take 2

The time has come.  Scarlett begins chemo tomorrow.  She will get two drugs via infusion (given by IV directly into her port), then one will be given at home via g-tube.  We aren't 100% sure what it will be like.  They tell us it won't be anything like what we dealt with before, but I am skeptical...I guess I can't imagine it being any better. 

I have to work tomorrow.  It's one of those days that I will have a really hard time focusing on my job, but will have to make it through.  Luckily, it's Friday, and we hang a little looser in kindergarten on Friday!  As soon as my students leave at noon, I will make my way to the hospital, where Chris will already be with Scarlett.

The infusions are each 90 minutes.  That means that with prep time, fluids, pre-medication for nausea (it's expected to come on quickly this time), we will be there 4-5 hours.  I have yet to figure out how we will entertain Scarlett in a hospital room, connected to tubes and wires, for so long.  Usually we have the benefit (if you can call it that) of sedatives and pain killers.  I doubt she will be incredibly cooperative, so we are packing a bag of entertainment to try to help.

Thankfully, she has been so happy all week.  She absolutely loved getting to go back to school.  She has played her heart out for the last few days, and is full of smiles.

Not me, though.  I have been a mess for several days.  I have been distracted, short-tempered and tired. I can hardly look at her without getting choked up.  I have been frantically taking pictures and videos just in case we never get to see her as healthy as she is now.  I know it is grim, pessimistic, sad...whatever you want to call it.  But for me, it feels like the only chance I may have; we can't go back.  As she giggles and scoots, I keep thinking how cruel it is to make her sick when she cannot understand why.

There is a point in a traumatic experience when you can't cry anymore.  There is no point - it no longer provides the emotional release it used to. You know that it will not solve anything.  It drains you of the last shreds of energy you have saved up for the next stage, and you just can't afford to lose that.  I have cried everywhere over everything with everyone.  I have cried in movies, in meetings and in the shower.  I have cried more in the last two years than many people do over many decades.  I've reached the point that I just get it over with when I'm ready, get it out of my system for a while, then move on.  And there is no end in sight.

Scarlett never ceases to surprise me.  She is 24.8 pounds and around 32 inches long.  She is in the last few weeks of teething ever - finally!  She learned to suck on lollipops this week, thanks to a school friend's birthday; this is a skill we have actually been practicing to help her swallowing.  She has also learned to cruise furniture while standing - no surface is safe if it is below waist-high!  She signs "want" when she wants more - whether its food, singing or playing.  She sleeps through the night every few days, but generally likes to have a chit chat party around 3 am.  And she rarely naps.  There's just too much to see!

This is my beautiful, amazing girl last week. She put on quite a show for this shoot.

Thanks to Krista Lucas Photography for always being there when we want to capture a moment.

New Year

Happy 2013 everyone!  We're just getting back into the swing of things after the holidays.  We had a nice visit with Chris' family, and then a fun little New Year's Eve of fondue and wine with friends and their 2.5 year old twins (making me appreciate more and more my one crawling kid!)  Now I am back to thinking about school, getting my classroom ready once again (it needed some TLC after my distraction before the break); it's also time to get back to the business of Scarlett's new treatment.

Today, we had a follow-up appointment with her neurosurgeon.  He says her incisions are healing well, and that she is safe to start chemo from his perspective.  He will see her in a few weeks when the healing is further along - scabs should be falling off (lovely) and skin closing - to make sure she is still infection-free once she begins chemo.

He confirmed that the tumor pathology came back as recurrent glioblastoma.  No ifs, and or buts.  Her oncologist has yet to get a sample for second pathology, so there are still some oncology-specific questions awaiting answers, but we know what we are dealing with.  However, he also showed us the post-operative MRI images to show us that the tumor, along with a margin of additional tissue for good measure, was completely removed.

Tomorrow, she will have another MRI at LPCH; it was scheduled months ago, and we all agreed it was not a bad idea to get some pictures of what is happening in her head before starting chemo.  We hope to see no additional tumor growth from the last three weeks.  It is the first time her new port will be accessed.  I hope she is as tolerant of the numbing cream, plastic wrap and giant needle as she was before...

The plan is still to begin chemo on January 11.  Scarlett and I will both begin school again on Monday, so it is back to the grind for us all.  We will once again be trying to find a new normal, a way to get through this next phase with our sanity intact.

Two years ago this week, the first gigantic tumor was removed in two 12-hour surgeries that nearly killed Scarlett.  She was only 11 weeks old...I know I posted these pictures a few weeks ago, but I keep going back to them.  I remember so vividly what it was like in those first awful weeks...we have come so far.

Jan. 4 2011: the night before the first big surgery (she had already had a biopsy the week before).  She couldn't hold her pacifier yet, but she would hold my finger as I held it for her.  By this pint, she had lost the ability to lift her head, visually track, and was having seizures that we did not know about.

A few days after the first surgery...in a warmed newborn bed, so swollen, unable to move her eyes, left arm/leg, or breathe on her own; severe seizures, getting blood transfusions around the clock.  The nurses in the PICU, who meticulously cared for her for the three weeks she was there, and every time since, recently told me how scary it was for them in those first days, that the doctors had prepared them for the worst.  So grateful for their compassion and bravery.

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.