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!!

Movin' and Groovin'

23 Months

Scarlett is 23 months old!  Her weight is up a little to 23 pounds, 4 ounces, which is great (between the 10-25th percentile for her age)! She is almost 30 inches tall, which is less than the 5th percentile...she may never be a basketball player or a supermodel, but I'm okay with that.  We moved her up to a "big girl" car seat (still rear facing!) last year, but she would have JUST outgrown the tiny infant carrier we used in her first year.  We think she may be getting some molars, as the drool factor has increased exponentially lately - 2 or 3 shirts a day minimum, with a bib all day at school.  I just bought her the first size 5 shoes (sparkly pink and on clearance - couldn't pass them up!) and they still slide off; I am quickly realizing that the size 2T clothes I bought at the end of the season last year in anticipation for this winter are going to be too big.  Still, no one is disappointed with her growth, especially in light of the issues we have had over the summer.

This girl is on the move.  She NEVER sits still anymore unless strapped down.  She has finally decided that if she wants something, she will get it, no matter what.  She has a broad repertoire of moves - scooting, turning, twisting, kicking, rolling - that get her going.  This week, she made her first forward motion with crawling!  She goes just a few inches, but both legs get pulled up.  She is learning a few position transitions - laying to sitting, sitting to kneeling, even to standing if we help a little.  We can no longer take our eyes off of her when she is on any raised surface (as my mom learned when she flew out of her high chair the other day - no harm done!)  We are working on teaching her to sit from standing, since her only way to get down is cry for help, or fall straight back.  I'm pretty sure her neurosurgeon (and everyone here) would prefer she not smack her head on the ground.

Last week, she finally figured out how to get around in her gait trainer.  She will roll around the living room to check out her play table, whoever is at the couch and look out the back door.  She found the dog's raised water bowl the other night, and had so much fun discovering it on her own and splashing away that I just ignored the dog slobber and let her go for it (with a good bath soon after). I will probably regret ever saying it, but it is wonderful to see her beginning to enjoy some independence, discovering her surroundings on her own, and getting into normal toddler trouble.

She is also noisy!!  She is constantly babbling, with many more consonant sounds, resembling more words.  She does not say many words, but she has learned the sign for "cheerios" and consistently waves bye-bye.  Every few days she seems to be picking up something new. 

Her eating has improved, too.  She still can't swallow much liquid, and spits out much of what she chooses to eat, but she is learning to like many more things thanks to her snacks at school.  She has been enjoying yogurt, cheese, raisins, black beans, and bread.  She still prefers finger foods like cheerios, but her new favorite is fig newton bars.  She starts bouncing up and down when we take the package out of the cabinet, devours them, leaving only a sticky, gummy crumb trail in her path.  We are still happily blending her remaining necessary calories in our VitaMix blender to be fed through her g-tube - still the best decision we ever made.

The next month will be exciting, yet difficult as we plan her birthday and await the next MRI on October 30.  Chris and I are struggling with this unknown MRI spot.  My mind flashes often to what I have read, the kids whose stories I have followed who have died, the effects of radiation on babies, the size of the first tumor, and I am overwhelmed.  We will be on pins and needles until we get this figured out; there's just no way to ignore it.  I have thought about calling to say no waiting, scan her now; considered getting another option; debated about forcing the issue.  But we have trusted these doctors with her life thus far; I have always felt like they are doing the absolute best for her that they can.  If they feel like waiting is best, I have to believe that, and not let my nervous anxiety interfere.  You can bet, though, that if Scarlett even blinks a little strangely, I will have her in their offices for a new MRI.  I did not claw my way through the last 21 months to be defeated now.

Trying to Stay Calm

I had been waiting to write a blog update for a few days as we waited for MRI results.  Unfortunately, we did not get the best news, so I just have to get it out.

There is a spot on Scarlett's MRI.  They don't know what it is.  It is most likely a blood vessel that looks a little strange; as the NP scrolled through the slides from the MRI, there was evidence of a blood vessel leading right up to the spot, so it could just be part of that vessel.  Lucile Packard Children's Hospital (Stanford's children's hospital, where Scarlett has had all her oncology treatment) brain tumor board has reveiwed it, and the gut feeling is that it's a blood vessel.

But maybe it's not.

It could be the start of  a tumor.  It's too small to do much about at this stage.  Scarlett's neurosurgeon at the other hospital is being told (the NP wanted to warn him in case he read it here first...)  We will wait 6-8 weeks and get a new scan, which will hopefully help give a concrete answer.  If it is a vessel, it will be the same or invisible.  If it is a tumor, it will be pretty unmistakeable by that point.  Until then, we just have to wait.

Because she knows us very well, Scarlett's NP knew we needed to know what the plan would be if it is a new growth.  At this point, a new or recurrent tumor in the location we saw today would be operable if it were larger.  Once it was removed and biopsied, because Scarlett had such intense chemo already, the next step would be focal cyberknife radiation.

It is so much to take in, and even harder because we don't really know if there is anything to worry about.  My heart dropped and my eyes filled with tears as soon as I heard the NP's voice change to the "something to tell you" voice.  I know enough about the common progression of these tumors to know that any hint of a recurrence is bad news.  Very few children survive the first tumor, and even fewer make it through a second.

I'm not sure how to go 8 weeks patiently.  We are busy enough to bury ourselves in work, school, therapy and blood drive prep (Oct. 20!!) but there is no way to erase this from my mind.  I deelpy hope this is another bump in our road that will pass uneventfully.

It's been a rocky few weeks in general.  We have had to make some big decisions that are exhausting to deal with.  First, we had to leave her current audiologist.  We have dealt with months of problems, capped off by a very upsetting cancellation of a sedated test after we were not told the time had changed.  We will move her services to the other hospital, which is closer to her school.

We are also struggling with what to do about our health insurance.  We have had insurance through Chris' job at Starbucks for the last year, in addition to Scarlett's state-provided coverage.  It is decent coverage, reasonable premiums and only requires 21 hours per week of work.  It would seem like he could stay there, but we are really struggling with the time.  His week is back-to-back school and appointments, followed by three days of mind-numbing, on-your-feet work.  He needs, and deserves, a break.  We had hoped that my new job would have reasonable benefits to allow Chris to quit so he could take on Scarlett's care as the full time job it is.  Sadly, my district offers only painfully high-cost health coverage - over $2000 per month to keep Scarlett's doctors.  We have investigated all the alternatives we can think of; we were denied for independent coverage due to Scarlett's preexisting conditions; we may have options through our university alumni association eventually, but they said we would need to exhaust Chris' COBRA benefits first in order to qualify with her history.  I am not sure how we will proceed yet, but I hate seeing him exhausted week after week with no time off.  Since we have been through so much over the last two years, we really value the time we have together as a family, even if it is just to be home together, and a change in Scarlett's scans makes that even more critical.

There is a lot to consider in the coming weeks.  On the plus side, Scarlett is making amazing progress at school, which I will share more about in the next few days.  Seeing that helps to drive our efforts, and reinforces our confidence that this crazy schedule is worth it.

We are focusing on getting Scarlett's birthday party/blood drive ready.  We are still looking for raffle items, which will be used to help raise money for the Pediatric Brain Tumor Foundation.  If you have something you would like to contribute, please let me know at scarlettgrace2010[at]gmail[dot]com.