Friday, September 30, 2011

Welcome to Holland

This little story was written by Emily Perl Kingsley, who has been writing for Sesame Street since 1970, and has a son with Down Syndrome.  Another mom of a kid who has survived the same tumor as Scarlett shared this, and I feel like it so accurately describes the feelings I share with so many moms of special needs kids.

Welcome to Holland 
by Emily Perl Kinglsey

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I really wanted Italy, but I am learning to love my life in Holland.

Borrowed from the National Down Syndrome Congress, and thanks to Anne, George's mom, for sharing. 

Mommy Time

Today I made a big leap in reclaiming my own life - I went to the doctor.  For me.  Nothing serious, no major concerns, but I hadn't been since my 6 week postpartum visit, and a few issues needed attention.  I also needed my flu shot - there is no way I can afford to get sick.

It was also nice to get to see our family doctor, who I hadn't seen since we took Scarlett to see her for an emergency chest x-ray when she had RSV in February.  I have been seeing her for years, and we chose her to be Scarlett's doctor before we knew she would need her own team of specialists.  I will forever be grateful to this doctor for taking the bruise and swelling on Scarlett's head so seriously at her two month appointment; if we had waited even a few days to get her to a neurosurgeon, she would likely have had seizures and lost some of her vision as the tumor was growing at full speed.  We look forward to the day when Scarlett can have a "normal" doctor again, and we know where we'll take her!

We have an amazing 41 appointments scheduled for Scarlett's Birthday Blood Drive!  We are hearing a lot of "I'll be there!!"s, so try to make an appointment so you don't have to wait too long.  We've got confirmed snacks from our friends at Dino's Grill in Newark, some fun raffle prizes stacking up thanks to Terry Malcomson, a plan for music and birthday cake, of course!  If you have raffle prizes to donate, or any questions, please e-mail us!

Thursday, September 29, 2011

Another Birthday

Today is my sister Lindi's birthday.  She is celebrating by relaxing at the beach.  She is currently about 34 weeks pregnant, and feeling appropriately exhausted, I think.  We celebrated her birthday with the family last Sunday with my first vegan (for Lindi and her husband Mike) and gluten free (for my mom) coconut was dry.  I'll try a different recipe next time.

One year ago, we were getting ready to celebrate her birthday when all of our lives took a turn.  Once year ago today was my last day of work.  One year ago today, Lindi was admitted to the hospital, in labor at 22 weeks (just 5 months) pregnant, and one year ago tomorrow, we lost baby Zoey.

Lindi has written about her experience on her blog, and has given me permission to write about it here.  It's a very difficult subject, but, like everything else we have experienced in the last year, she tells others so to bring awareness.

I was in a staff meeting after two consecutive days of back-to-back conferences (25 sets of parents in 2 days), preparing for my maternity leave to begin in just two days.  My phone had been ringing in my purse all during the meeting, but I ignored it, assuming it was my sister or mom wanting to make plans for a birthday dinner.  It could wait.

When I finally looked down, I saw a text from Chris saying "Call you mom or sister NOW."  I immediately called my mom, who was obviously upset.  She was sitting in the doctor's office with Lindi, waiting for the doctor to return with results.  She said that Lindi was dilated and not feeling well, and that things weren't looking good.  As she explained, the doctor came back in the room in tears, and I could hear the fall-out over the phone.  Lindi was being sent to the hospital.

I grabbed a few papers from my mailbox and went directly to my car.  I drove as fast as I could, illegally in the carpool lane, making call after call. Dad told me that he was on his way to the hospital, and I should meet them there.  Just weeks before, we had toured the hospital in preparation for Scarlett's birth, so I knew exactly where to go.

When I got upstairs to the room, the first thing I did was volunteering to leave.  I didn't want her to see me, nearly 9 months pregnant, while she was in labor with a baby she could not keep.  She told me to stay, and we cried.  The rest of the night cycled through with crying, talking, laughing over inane things and silence.  We cried as we listened to Mike, stuck in an airport in New York, unable to get home in time, trying to understand what was happening through phone calls and texts.  

All the doctors really knew was that she went into labor for no apparent reason, and the baby was too undeveloped to survive.  By the time she realized something was wrong and got to the doctor, she was too far along for them to stop labor, already 6 cm dilated.  There was simply nothing they could do.  Lindi had to continue through the labor process and deliver the baby, and there was no chance that the baby could be saved.

Lindi was so calm.  She came to terms with everything very quickly, which I think is the only way she was able to get through it all.  She had done nothing wrong, and there was no cause; this baby was just not meant to be.  Two weeks earlier, they had found out they were expecting a girl and had given her the name Zoey, which Lindi had liked for years.  They had just begun choosing items for a baby registry, found a few cute outfits to hang in the closet and begun to call her ladybug. 

The night went on, and we congregated in the hospital room, nurses ignoring the room capacity and allowing us to do what we needed to do.  They checked in regularly to give pain medication and check her progress.  At one point, as a few of us stood in the hall, we remembered it was Lindi's birthday.  It was getting late, maybe 10 pm, and we were afraid she would deliver the baby on her birthday, forever marking that day with sadness.  We asked the nurses to please not rush, to try to get her to the next day.  They said they couldn't do anything but let her labor at her own pace.  I don't think it would have really made a difference which day.

Around midnight, the majority of us left.  I was too tired to be any help.  My mom, Mike's mom and a friend stayed overnight.  I got a call early the next morning that it would not be long, and to come back.

When I tried to enter the hospital, the security guard asked why I was there before visiting hours.  It was the first time I had to talk to someone outside the family, and all I could say was "My sister is having a baby."  It was painful to say, but he let me through and I headed upstairs, where Lindi was ready to be done with labor.  It had been more than 12 hours of full-blown labor, knowing that the pain would not end in a reward. 

A short time later, the doctor arrived.  The hospital worked with on-call doctors, and that days on-call doctor was none other than my OB-GYN, whom I had seen earlier that week.  When she walked in to see Lindi, then saw me sitting in a chair, she stopped short, looking for an explanation.  All I could saw was "This is my sister."  She gave a pained look and continued to her new patient.  

Just a few minutes later, it was time.  I thought I was going to be okay, but as soon as the doctor began to gown and prep, I began to cry.  Since she was my doctor too, she was concerned that it was too much stress for me, and asked me to leave.  I couldn't argue - I was no support as a crying mess.  I hugged my sister and walked to the waiting room where I sat with my dad, unable to saw more than a few words.  

It only took a few minutes.  Zoey was born at one pound, one ounce.  We were invited into the room, where my sister was holding her in her arms.  She was tiny and fragile, barely moving.  Mike was on the phone, and spoke a few words to his daughter over the phone, still stuck in the airport across the country.  We all took turns crying softly, except Lindi.  She just admired the baby, looked at her features and gently stroked her.  It was her baby, no matter what.  After a while, she was ready to hand her child over to the nurses, who would keep her nearby until Mike could get there later that night.  Lindi needed to rest, so those who had stayed overnight went home, and Chris and I stayed in the hospital.

After a few hours, a nurse came in to tell us that they needed to take the baby to the morgue, and that Lindi needed to sign a death certificate.  This cause panic in the room, as we were expecting her to stay on the floor (I am not sure where) until Mike arrived, and for him to be there when anything more happened.  We started yelling and crying, and the nurse, whose English was not very strong, tried to explain.  She left, and another nurse came in and said, "Are we having a crying party?"  This set us off.  Lindi started yelling.  I started yelling.  The nurse was not sure what she had done, but knew to get out fast.

We had the pager number for another nurse who had lost her own baby years before, and had been kind and patient with Lindi while she was there.  We called for her to come, that we needed help.  She rushed in and we both broke down again.  Nurse Nahdra was wonderful and went straight into action.  She stood guard at the door and would not allow anyone else in without her approval.  She brought the nurse manager in to explain that they would take Zoey, but nothing would happen and they would bring her back as soon as Mike arrived.  No papers would be handled until he arrived.  She got us Lindi moved to a corner room that was isolated from the rest of the ward, so that she would not have to hear the cries of new babies through the walls anymore.  Nahdra had herself assigned to Lindi, and did not allow any other nurses to come in.  We were so grateful for her.

The rest of the day passed uneventfully.  As my sister rested and Mike was in flight, I made some uncomfortable phone calls to family and friends.  My mom and I discussed later how saying what needed to be said was difficult, and we had not done it very well.  Giving bad news to unsuspecting people was an awful feeling.  Little did we know it was just a dry run for what was coming with Scarlett in just a few months.

We learned later that there was nothing wrong with Zoey, no reason she could not have made it to full term.  She would have been a healthy baby.  While many people call it a miscarriage, Lindi prefers stillborn to honor the fact that her child was born.  The hospital and state, however, did not consider this.  They only issued a commemorative birth certificate, but an official death certificate.

After the stress everyone in my family had been under, Chris and I spoke with my doctor, and she agreed that scheduling an induction was a good idea.  It gave us some control, and allowed us to plan for the least stressful birth experience we could.  Once of my biggest fears was being in the same room that Zoey was born in, so we were able to specifically ask for a different room (Scarlett was born just down the hall from her cousin).

As difficult as the entire ordeal was, it brought my sister and I a little closer.  She was there by my side two weeks later as I delivered Scarlett in the same hospital, and was a wonderful support, despite how difficult it must have been.  She was there with us when Scarlett was diagnosed a short time later, and as we walked the halls of the hospital, passing new mothers carrying their brand new babies, I felt a tinge of what she had felt, seeing someone else beginning a journey that was being hijacked from me.

Luckily, Lindi and Mike have baby Caleb to look forward to on this sobering day.

This image was created by Carly at The Butterfly Beach.  She honors babies that have passed away by drawing them a butterfly on the beach near her home in Australia and letting it be washed away by the waves.

Tuesday, September 27, 2011

Another One Down

Cycle 7 of Chemo is finished!  We gave the final dose last night.  The side effects seem to have worn off and she is back to normal again, eating a little better and being very active during the day.  Now she gets a week off before we start the next cycle - a new drug that she will get daily for 28 days.  Only 5 more cycles to go before we are a chemo-free home again. 

Yesterday we found out that, despite a great interview, and after a week of waiting, Chris did not get the job at rhymes-with-Schmoogle.  We're both disappointed, but we have to move on.  It has been almost two years of this - recruiters calling, great interviews, sometimes multiple interviews, positive feedback, once even a week of shadowing - and then they "go in a different direction."  He is feeling frustrated and defeated, and we're both worried about what this means for us in the months to come.  If something doesn't change soon, we will be forced to make some drastic changes.  Until then, we just keep moving.

Saturday, September 24, 2011

Daddy's Blog: Supporting The Story

I’ve steamed about 25,000 lattes since I last wrote something on the blog, or written anywhere else for that matter.  Sometimes I feel like I haven’t opened my mouth in ages.  I feel like the tin man.  The inertia of working/coming home/sleeping/and repeating…has made time slip away in silence.

But rest assured readers, all of this time, I too have been here.  I too have feared what would happen and I’ve imagined the future and lamented the past.  I’ve done it in blog-o-silence, but I’ve done it all the same. 
The other night Brandi and I agreed that just being present hasn’t felt the same, and that I should again stretch my typing fingers out to give a small contribution to this thing that was initially a group effort.  It’s probably just once a week, and only time permitting.

So--what’s happened since March?  Well, after Scarlett’s tumor was removed, looking ahead to the painful endurance of chemo, we realized that we couldn’t keep doing all of this without money, and that I had to go back to work.  Yuck.

What’s work like?  I steam milk.  I pour coffee.  I’m polite to customers.  I clean bathrooms.  I wash windows.  I count money.  I mop floors.  I stock pastries…other three word sentences like this...

Bored yet?

I’m the one who goes to work.  Brandi’s full time job is Scarlett’s care.  That’s the story you’ve read about, and that’s what this blog is about.  The parts in between is what I do every day.

Work takes up a huge chunk of time, and because of that, a strange thing started happening a few months back.  I started missing things.  It was just a few appointments here and there, and that was rare at first, but it became increasingly common over time .  I started getting overwhelmed with the schedule of appointments and assessments and therapies, and it just got too difficult to manage requesting days off.  Eventually we found ourselves in a place where it was common for me miss things.  It began to feel normal.

Now I miss a lot of things.  In fact, there are people who only know Brandi, because she’s the only one they’ve dealt with.  There are departments and services that only Brandi manages.  Social workers ask for Brandi, not ‘the parents of Scarlett Wecks’, over the phone.  I give the phone over.  When I do go to appointments, who am I?  I’m the male-half of the relationship.  I’m that less eloquent, less informed, less authoritative supporting player.  I’m less.  In their eyes, I’m less.  In the context of Scarlett’s care, I’m less.  I’m the one who their eyes pass by before they reach Brandi’s.  In the story of our day, I am often missing.

And I don’t know things, too.  Difficult to imagine, but I’ve lost track of which person deals with which service.  The major people I still know and see: our oncology PNP, our neurosurgeon, and others…but a lot of people I don’t know, and I can’t keep it straight.  If I come home at 8PM, there’s only so much I can retain while we eat dinner and put Scarlett to bed.  I rely on dosage notes on the sides of Scarlett’s medications now when I give her the evening meds she takes with her chemo and overnight feeds.  I ask how much she’s eaten, because I don’t know.  It’s a struggle I am working hard to overcome.

It’s been a strange thing.  Working while Brandi takes care of Scarlett has made me an outsider in my own life.

Of course I’m not without a life.  For over a year I have been trying to launch a small business.  Every now and then I write a little still.  I’m still on the job hunt.  And the little things in my days still stick in my memory.  Conversations and interesting things all still happen to me.

But when family and friends talk to us, there is little of that to include.  We are a story about Scarlett and her care.  My portion of this is the money it takes to make it happen.  So when they turn to me, they say one thing:

“How’s the job hunt going?”

It is, after all, the only relevant thing to ask me.  If Brandi and I are the narrative of Scarlett’s care, then that is what I am reduced to.  When people think of me, it’s about a job they think I might be good at.  Little else matters.  I don’t sew bibs or make appointments or fight with social workers.  I make money, and the more of it the better.  My interests and ambitions are private ones because they aren’t relevant, and frankly they’re second place to anything to do with Scarlett.  All of my experiences become trivial, because they don’t contribute to the overarching story of Scarlett’s care

This is partially why a lot has happened, but I’ve written so little.  It's impossible to even frame my life here.

I'm hopeful that things won't always be this way.  There’s a lot I thought I’d be doing with my life by this point, and I look into the future and dream of days when the pieces of my life will become relevant and important again.  Brandi and I both do.  Until then, here’s to latte number 25,001!

Friday, September 23, 2011


For the longest time, Scarlett did not laugh. She would smile big, and you could tell she wanted to laugh, but no sound came out. We discussed this with all kinds of doctors, audiologists, and therapists. I don't know if it is related to her hearing or just a quirk about her, but she still doesn't laugh much. However, that doesn't mean she can't.

I am pretty convinced that she is just a discerning critic, and we are not as funny as we think we are.

Wednesday, September 21, 2011


Today we visited the ophthalmologist.  Scarlett's eyes have not been examined since before her first surgery, so it was time to follow up.  As always, we were ready to hear whatever the doctor had to say, ready to do whatever needed to be done.

We knew there was some limitation to Scarlett's peripheral vision on the right side.  In the days before her first surgery, the tumor as growing quickly and we were seeing slight changes on a daily basis.  One was her eyes beginning to move in different directions and unable to track from side to side.  The doctor then told us that the optic nerve was in good shape, but that the tumor was putting pressure that was causing her eyes to deviate.  Once the tumor was removed and the pressure equalized after her first shunt was placed, her eyes came back to center and eventually began tracking and following movement.  One pupil has always been slightly larger than the other, but both are equally responsive to light.  

However, we noticed she was ignoring things on the right side, especially once her hearing was compromised.  I could with my face just inches from her right ear, and she would not turn or pay any attention to me.  Even with the hearing aids, she seems to just not pay attention to what is on her right.  This extends to her reflexes some; if we tip her toward the right, she does not put her hand down to support herself the way she does on the left.

Today was the first visit to the new doctor, who will now see Scarlett every few months.  She was, first and foremost, so amazed by Scarlett!  The little miss was all smiles until the eye drops had to go in.  She tracked and followed every toy and light that the doctor used (something she will never do for momma at home!)  After allowing her eyes to dilate, we were relieved to hear that her vision remains undamaged.  The peripheral field cut will always be present, but children, especially those as young as Scarlett who haven't experienced much different, simply learn to deal with it.  I had braced myself for glasses, vision loss, or worse, but was pleasantly surprised.  It doesn't happen all that often!

We are up to nearly 20 registered blood donors for our Oct. 22 drive!  Our goal is 100, and today's article on the Newark Patch gave us a great boost!  If you are planning to donate, please make an appointment!

Tuesday, September 20, 2011


I have not had as much time to blog as I used to.  When Scarlett was in the hospital for (what felt like, at least) weeks on end, I had nothing else to do.  Now, between shuttling her around for appointments (4 this week, each on different days), working on some projects (I've become very crafty since becoming a mom...more to come on that) and trying to keep up with the phone calls, mail and the occasional friend, I just don't have a chance.  Plus, she is ready to be a part of everything we are doing!  
This is the only way we can get things done around the house!
Hopefully things will start to level out and I'll have more time...or less sleep.  Either way, I'm trying for more blogging!

We are two weeks into the new chemo, with one week left to go before a week off, then switch to the next drug..  We give it every night after she goes to sleep. We have to record each dose - date, time, amount, and how she reacts.  You can see on this page of the journal we have been pretty routine about bed time...

Despite the anxiety I feel every time I pull on gloves to protect myself from the toxic syringes, it has been relatively uneventful.  We have found our groove with anti-nausea medications, so she feels better.

We have finally, finally begun a regular therapy schedule.  Scarlett sees a physical therapist and an occupational therapist each week.  She needs to go on two separate days because each is a huge workout for her, and she needs a break after.  Luckily, this therapy is through California Children's Services (CCS) and is at no charge to us, and at a local school that is just a few minutes from home.  When I was looking for private therapy services, I was having a hard time finding places that were designed for children, with kid-size equipment and furnishings.  Our CCS therapy unit is great, filled with tumbling mats, toys, and all the specialized equipment that kids need to make therapy effective yet fun and unintimidating.  Now that we have seen both therapists, we are excited to get past evaluations and begin working on Scarlett's various motor delays.

Occupational therapy deals with fine motor and self-help skills.  For Scarlett, this mostly revolves around eating.  She is a very inefficient eater, sucking on a bottle happily for 30-45 minutes but only getting an ounce or so.  A combination of appetite and motor skills seems to be the root of the problem.  In yesterday's therapy session, the therapist showed me how to massage her top lip down to relax it and encourage her to make a better seal on the bottle.  Next week we will look at how she handles spoon food, and hopefully get some ideas on how to get more into her.  If we can get more food and fluids into her during the day, there is hope we might finally be able to get rid of the NG tube.
Physical therapy deals with gross motor skills, those that involve the big muscles in the body.  Our main goal for Scarlett is to get her rolling and sitting.  Since her movement was so limited while in the hospital, and she generally felt icky for so long, she has not developed all the muscle groups that allow for these movements.  We are doing a lot of leg exercises, tummy time and stretches to make her more aware of her muscles and abilities.  There is no medical reason she can't do these things, and she should eventually be able to crawl, walk and run. 

So far, we're very happy with the therapists and their ideas for Scarlett.  Both are very experienced and knowledgeable.  They don't see a lot of kids like Scarlett with such complicated needs, so they don't really know what to expect from her.  Neither expected her to be so happy, engaging and easy to work with.  It's like she wants to show them everything she can do, and smiles the whole time.

We leave each therapy session with ideas and exercises to work on at home for the next week.  This is the hardest part for me, because it is up to me to work on each task from both therapies every day.  It is mostly done in a playful way, but when you add it to the feedings, chemo, and everything else, it can be overwhelming to remember to hit each area.

I am hoping that it gets to be more routine, just like everything else has.  We have fought hard to get her into therapy, and I want to make sure we are using it to the best advantage to her. 

Sunday, September 18, 2011

11 Months!

Scarlett is 11 months old!  She is 18 lbs, 1oz and almost 27 inches.  She still has three teeth on the bottom, but one on the top has finally made its way through!  She has no interest in rolling over, but she does try to sit up and bounces on her chubby legs all day long.  She has just begun trying to get objects into her mouth besides her hand and pacifier, and grab her legs and feet.  She holds her own bottle with just a little help.  She's eating a little better despite nausea from chemo; she seems to like vegetables better than fruit and tolerates a little yogurt.  She is not a fan of any solid, dry or crunchy foods, which we will be working on in OT.  She loves to splash in the bath, and ride in the stroller or grocery cart.  You still can't see in pictures, but she has downy white hair all over her head, bushy blond eyebrows and thick brown lashes.

It's been 9 months since she was diagnosed with a brain tumor.  Her doctors are blown away at her progress and good spirits at every turn.  We can't get enough of her.

And now the countdown begins to the big birthday bash...

Tuesday, September 13, 2011

Blood Drive FAQ

Between the blog, our Facebook page, and people around town, we've had a ton of questions and we want to make sure everyone is clear on the plan.  If you still have questions, you can e-mail us and we'll do our best to answer.

What blood drive?
We're hosting a blood drive in honor of Scarlett's first birthday on October 22, 2011 from 10am to 4pm at First Presbyterian Church of Newark in Newark, CA (on the corner of Newark Blvd. and Cedar for you locals).  The drive is sponsored by the Stanford Blood Center, which has provided all the blood Scarlett has been given since she started chemo.  We're hoping to have birthday cake and some other goodies, along with a raffle for people who come by.

I'm busy that day OR I live in Timbuktu but I want to give blood!  How?
You can!!  This blog reaches worldwide, and we certainly don't want anyone who is eager to donate to miss out.  We are encouraging anyone to give blood in your local community.  You can let us know via the blog in October (we'll have some way for you to post it), or just pat yourself on the back.  Not sure where to donate?  Try the Red Cross or ask your local hospital where they suggest; they will be more than happy to direct you to a donation center that will benefit their patients.

Eek!  I'm afraid of needles.  Isn't giving blood horrible?
NO!  Giving blood is not scary or hard, and it saves lives!  The blood center staff is trained to draw blood as quickly and painlessly as possible (they want you to come back!)  Need some encouragement?  Scarlett has been poked by a needle in the chest more than 100 time so far.  She doesn't even cry, and she's a BABY.  YOU CAN DO IT.  Bring a friend or stuffed animal if you need to.  Click HERE to see what the donation process is like.

I'm anemic/breastfeeding/pregnant/taking medication/tattooed/pierced/sneezy/sleepy/dopey/doc - can I give blood?
To see the eligibility requirements for giving blood, click HERE.  We know not everyone can donate.  If you can't, maybe you can convince someone else to.  Be creative!  If you can't give blood, you can still come by the event and say hi!

Will Scarlett get my blood?
If you give blood through our drive or any Stanford Blood Center, and you have the exact right blood type (A+), and she were to need an additional transfusion,  it is entirely possible that she could get your blood.  However, our goal here is not to store blood for her, but to help stock up the blood bank for other patients like Scarlett who rely on donated blood.  We are not getting any credit toward expenses or any bonus for having a blood drive. 

Sounds great!  I'm ready to donate!  What should I do?
Awesome!  We would love if people made appointments so we know how many people to expect.  Make your appointment NOW! 
I'd like to help with the drive.  What do you need?
We're still working on the details, but we WILL need help to make this run smoothly.  Right now, we are looking for GREAT things to use in a raffle for donors.  If you have something you would like to contribute, please e-mail us at

Holding Strong

Scarlett visited her NP today for her now weekly labs and check-up (we're down from regularly twice a week since February, and far from the dreaded 5 appointments in a week).  She's doing great!  Round 7 of chemo has had very little effect so far.  She is a little (or a lot) queasy if we aren't right on time with her anti-nausea medications, but otherwise feeling good.  Her ANC (white blood cell/immune system count) is still safe and high.  She is still far from needing any blood transfusions.  It's almost...ALMOST...easy.

We're still waiting on the job front.  Chris went for an interview today that was cancelled and rescheduled the minute he got there...but they promise it's not because of him and they want to see him later this week (I don't want to jinx it, but it's a hugely awesome job at a place that rhymes with Schmoogle...)  Even if that doesn't work out, he had a great review and is in line to move up at Starbucks, so something will happen either way.  I haven't heard back from the school district yet (despite increasingly frequent e-mails and calls from me asking what's happening) so I will make my presence known tomorrow.

We're doing some local publicity for the blood drive, so if you're in town, you may see those little blue eyes peeking at you from posters while you're getting coffee or shopping.  I'm working on a blood drive FAQ post, so if you're still not sure what we're up to, it's coming.  If you're ready to make an appointment (which we suggest, since we have no idea how many are planning to attend...) you can get started HERE!

Sunday, September 11, 2011

The Beach

It was foggy, but we finally did it!  We packed up Scarlett and hauled ourselves to the beach.  And let me say, if you've never tried taking a baby to the beach, don't rush - it's not exactly easy with the diaper bag, stroller, towels and sunshade, and sand sticks to babies like crazy!  We didn't realize there was a wine festival going on, so there was no parking and we had to take the free shuttle bus from the parking to the beach.  Just as we got off the shuttle into the bustling street, we realized we had forgotten the diaper bag, so Chris had to go back.  Let's just say that by the time we got all the gear, found a spot and dragged the stroller through the sand, we were already beached out.  Luckily, we were still able to enjoy some time there together.

Friday, September 9, 2011

Blood Drive Appointments are Live!

Everything is set!

To make an appointment at our Oct. 22 drive in Newark:
  • visit
  • click Schedule An Appointment
  • enter the zipcode 94560 and choose Scarlett's Birthday Blood Drive
  • Choose an appointment time and enter your information.
  • Come to the drive and give Scarlet for Scarlett!
All the blood drive information can be found on the BLOOD DRIVE page (click the tab at the top of this page).
Let's fill those appointments!

Thursday, September 8, 2011

When Doctors Disagree

Quick Scarlett update:  She seems to be feeling good still.  We're onto day 3 of chemo, and no real change in her good moods yet.  Her stomach has been a little unsettled, but that doesn't really upset her much.  Here's hoping the good times continue for a while longer!

Last week, we made the drive up to Oakland to visit Scarlett's primary neurosurgeon (she's seen a few, but this one took out the tumor - definitely a rock star in our book.)  He will eventually perform a cranioplasty (cranial reconstructive surgery) on Scarlett to repair the caved-in bones of her head.  His office calls every few months to check in on her while she is on chemo, so we got discs of her latest MRI at Stanford and took them for him to see.

We've learned a bit about people who choose different specialties in medicine (and please, if one of our fantastic, wonderful, amazing doctors reads this one day, know that we mean this all in the best possible way...).  We've laughed about this for months, but it is proven true again and again. 

Those who like to spend time with families, read long reports and not get very dirty are oncologists.  They laugh with us, they answer our insane questions and are patient when we ask those same questions again.  

Those who are highly focused, not big talkers and like their patients best when they're asleep are neurosurgeons.  Nurses jump out of their way or hide when they come around; their instructions are followed precisely, and at top speed (ICU nurses have literally run Scarlett in a warmed bassinet to MRI on demand).  We make lists of questions, and don't play games...this guy is busy.

(As best I can tell, those who actually sit to talk, know everything about and handle the day-to-day details of patients are Nurse Practitioners...I am pretty sure that's where I would find myself in the medical hierarchy.)

So, as we waited to speak with the neurosurgeon, we knew basically what we were in for:  he wants to do surgery ASAP.  He had the same reaction when he saw her a few months ago.  The minute he saw her he had his hands on her head, feeling the bony ridges that protrude above her left ear.  He pumped the reservoir of her shunt to feel it cycle CSF through the tube from her brain to her abdomen.  He felt the brackets and clips he installed to hold the bones in place...only to have them collapse when her shunt was replaced by the other hospital's neurosurgeons.  He is just unsettled to see Scarlett's head imperfect, not as he left it. 
March - Healing from tumor resection and first shunt

April - shunt infected, swelling began
May - Second shunt healing, fluid levels adjusted.

June - Left side completely sunken every day.  This is how her head will look until reconstructive surgery.

 He jumped immediately to his concerns.  All babies have unfused cranial bones at birth (this allows the big head to be pushed through the mother's narrow pelvis at birth, and is the reason many babies have "cone heads" for the first few days).  These bones progressively fuse over the first years of life.  Scarlett's cranium had to be taken apart to remove the tumor.  The bones are currently healing out of position, and if not repaired, will heal inverted.  The sooner we do surgery, the less healing happens, the easier recovery she will have.

He discussed surgery ASAP, as surgeons do.  He felt that since her scans showed no tumor whatsoever, that we should be able to take a break from chemo to do a portion of surgery, just to make it look better and get things into position for better healing.  He was serious and ready to make a plan that day.
We called the oncology team immediately, asked them to make some time to talk to us about how we proceed, as she has been under their care for the last 7 months.  They are adamant that Scarlett was absolutely not ready for surgery.  Her immune system is not stable.  Her bone marrow is not producing blood cells at a normal rate, and continues to be suppressed by chemo.  While her bones are not positioned correctly, they are not healing as fast as normal babies because chemo slows growth and healing.  The skull defect looks bad, but it doesn't hurt Scarlett, and won't change much over the next year.  There will be no benefit to Scarlett to rush surgery.

We also got some of the first details about what we are looking at for this surgery.  It will be at least one, possible two or three surgeries to reset the bones and place a new shunt.  Depending on the condition of the remaining bone, it may require synthetic or cadaver bone.  It will involve significant blood loss and result in severe face swelling.  She may be in the ICU for up to a few weeks, depending on how she heals.  It will be hard on her, harder on us.

Last time we saw him and this was his reaction, we panicked.  We were so set in the oncology plan, we were scared we had missed opportunities and were making life harder for Scarlett.  This time, we resolved to ask the doctors to talk, negotiate and decide together so that we had a cohesive plan, and no longer got differing opinions.  Luckily, by the time we got to the oncology clinic, this conversation had already taken place and the plan was decided: no surgery for at least 6 months after chemo is complete, so at least one year from now.

When we decided to pursue surgery at the second hospital, we knew it would be complicated to have the doctors work together for Scarlett.  We were encouraged by the fact that the two lead doctors were friends, and had know each other for years through working in various hospitals around the country.  They called each other.  They talk about Scarlett without our asking, and kept each other updated on her progress under their care.  We did not prepare ourselves for them to disagree.  Even though this was resolved without argument (it just isn't safe, no question), it was very difficult for us to differentiate the right answer from all the serious talk.  In essence, they are both right:  Her head needs to be fixed ASAP, and she needs to have chemo.  One just has to come before the other.  They are each independently focused on their own specialty - oncologist on the cancer, neurosurgeon on the brain and skull - but the two are indivisible.  We have to be sure the cancer is gone before we can focus on the "cosmetic" issues.

Everyone is still on the same team:  Team Scarlett.  I continue to strive for all our practitioners to work together on Team Scarlett as well as these two have.  They have different styles, different priorities, but one patient, and they want to do their very best for her.

Tuesday, September 6, 2011

Round 7

After three weeks of patiently waiting for Scarlett's counts to rebound, she is officially ready to begin round 7 of chemo.  This is our first of 6 rounds (each a month long) to be given orally (or by NG for now) at home.  She gets cyclophosphomide for 21 days, and topotecan for 10 of those days, then 7 days off to rest before the next cycle.  While we don't anticipate her counts to drop too low or really bad nausea, it is still unknown how her tired little body will react.  Luckily, she is feeling really good, so it may be easier than if she had just completed the last round.

We were very, VERY lucky that she was ready today.  Since we picked up the chemo a few weeks ago, thinking she was going to be ready sooner, it came with an expiration date.  I checked this morning to see how close we were to losing the very expensive doses of topotecan that the hospital was the day.  If we wanted to use all 10 doses before the September 16 expiration date, today was the last chance to start without having to get replacement doses at $150 each.  We all crossed our fingers this morning as we got the lab results back.

I am entering this phase with mixed emotions.  It is a relief to finally get back on the schedule.  Every day we don't stay on track prolongs this entire process, and delays her reconstructive surgery even more (more on that in the near future).  However, administering the chemo myself at home feel so invasive.  The "bad stuff" has always been at the hospital, where everything feels foreign and sterile.  I have been ignoring the light-sensitive bags of cytotoxic drugs in the bottom of my refrigerator, but now we have to give them to our baby, who is feeling so good.  It's a bittersweet step towards being done with this forever.

Monday, September 5, 2011


Hi everyone!  In my continued remodeling, Starring Scarlett now has it's own Facebook page!  You can "like" it by visiting the page here, or click the "like" button on the left.  Blog posts will be posted directly to the new page, so you can get your latest Scarlett fix in your Facebook feed.

If you are on the "Scarlett's Miracle" page, jump on over - the new page is run by me, and while we are very grateful to those who set up the first page while we were still in the chaos of the early days, we are ready to take on a more "official" role.

If you're not on Facebook (anyone other than Wendy?) ignore all of this and enjoy your day!  :-)
Thanks everyone for being patient while I continue to learn how this stuff works!

Sunday, September 4, 2011


Can you see it?  I was trying to catch it in the sunlight.  Scarlett has hair!  Over the last few weeks, it has started to sprout back up.  Just a light fuzz all over her head, but she has bushy eyebrows and long eyelashes.  Her eyebrows and hair are so white they are hard to see, but her eyelashes are darker blond.  I was not going to get excited about it, but with the long gap between chemo cycles (yes, we're still waiting) I dared ask the NP if we'd get to keep this hair, and she thinks we will!  I can't wait for pigtails!

Just the Facts

  • Cancer is the #1 cause of disease-related death among children.
  • 12,500 children and teens will be diagnosed with cancer this year.  46 kids are diagnosed every day.
  • 1 in 300 kids will be diagnosed with cancer before they are 20.
  • The average age of a child diagnosed with cancer is 8 years old.  Some cancers, like brain tumors, are more prevalent in babies.  Others, like osteosarcoma, are found more in teenagers.
  • Cure rates are increasing, nearing 80% for some cancers, but as low as 50% for others. 
  • 25% of kids diagnosed will die from their cancer or treatment effects.
  • Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.
  • There are no known causes of pediatric cancers, and no way to prevent them.  They occur in every geographic region, ethnic and economic group.
  • Blood cancers like leukemia are the most common among children (40% of cases), followed by brain and spine cancers (27%).
  • More than 60% of childhood cancer survivors suffer from devastating side effects from treatment including heart damage, lung damage, infertility, chronic hepatitis, cognitive effects, and secondary cancers.
  • In 2010, the federally-funded National Cancer Institute allocated $600 million to breast cancer research, $300 million to prostate cancer research (which has a 99%+ survival rate) and less than $175 million to all pediatric cancers combined.  Less than 4% of the NCI budget goes to pediatric cancer.
  • Pediatric cancers are considered "rare" and "non-profitable" by pharmaceutical companies, so very little funding to directed toward child-specific research and development.
  • The American Cancer Society gives less than 1% (.007 cents per dollar raised) to pediatric cancers.
  • The Leukemia and Lymphoma Society gives 2% of earnings to pediatric causes.