Thursday, December 11, 2014

Surgery #15

For the last 3 years, we have been working on fixing Scarlett's skull.  It's finally time for the last step!

School was canceled today due to stormy weather (the first time I have ever heard of that around here).  I got to go with Chris and Scarlett to both appointments - neurosurgery in Walnut Creek and neuro-oncology in Palo Alto.  Unfortunately they landed on the same day, and there was no way to reschedule.  We drove a lot, in sheets of rain, with lake-sized puddles on the freeways, but we made it to both appointments.

 First and foremost, the neuro-onc appointment confirmed what we have waited two weeks to hear - her MRI is clean, no signs of tumor!  Hooray!  The rest was a lot of catching up, us sharing all the great things Scarlett is doing, blah blah blah.

With the neurosurgeon, we discussed his plan for surgery.  A little history...

At 6 months old, Scarlett's first shunt failed.  It was removed and replaced with a new one...the wrong one.  The wrong shunt (a non-programmable type) over-drained and, since her skull was still healing after the tumor was removed from below it, it collapsed.  She was in no pain, but too sick from chemo to undergo the surgery to repair it.

After chemo ended and she was safe for surgery, we had the first cranioplasty.  At that point, her skull looked like this:
At about 18 months old, she had surgery to reset some of the bones in her skull to allow them to heal and grow correctly.  Her head was relatively round, a fact her neurosurgeon is very proud of. 

Then came the relapse.  More tumor, more surgery to remove it, more chemo.  During that time, the bone as not able to heal correctly, so it started to collapse again.  It is not as serious a it was, but needs to be repaired.  This was scheduled for June, when we were all out of school...until the explosions of seizures the week before.
We all decided that we needed to know where the seizures were going before we decided to go in for surgery - it was a possibility that she would need some type of surgery for the seizures, and we did not want to do anything twice, or that would put the new skull into jeopardy.  So...we waited.

Now, it's another school break.  Scarlett and I are both taking the last 4 days before the holiday break to have surgery.  On Tuesday, December 16, she will go in for her 15th surgery (1 biopsy, 2 resections, port, a bunch of shunts and repairs to shunts, g tube, first cranioplasty, another shunt, another resection, another port).  The surgeon is hoping to be able to use her own cranial bone to create some new bone (some sort of splitting and mesh-making...I don't really get it).  He is not sure that her bone is thick enough to be used in this way.  If it is not, then he will use a bone paste to create a new layer over the current hole.  Either way will allow her skull to grow more normally, and be safer when she falls.

He is very optimistic that she will be out in two days...I think we will be happy to be home by the weekend (when he leaves for vacation!)  From our previous experience, Scarlett will have some major swelling and need heavy duty pain medication for a few days.  This was difficult with a one year old the last time she's 4.  She can walk, climb and fight against us (and the nurses).  She is starting to have some fear of doctors offices and medical procedures (like blood pressure cuffs) that were previously not a problem for her - which is normal and typical for a preschooler.  It's going to be difficult for her and us.

The good news is that, since this is the last surgical procedure we expect her to need - maybe ever? - she will have her port removed in February.  We already made the appointment, so it's on the books!  She has had a port for all but about 6 months of her 4 years - she is ready to have it out of her chest!  Once that is done, we will only have MRIs and regular-kid maintenance, along with check-ups.  No more huge surgeries looming over us for years at a time.  Hooray!!

The reward for all this hard work is Christmas!  We will get out of the hospital and it will be time to finish (start??) wrapping gifts and baking.  Every year, Christmas seems to be the time when everything comes down on us...this year, at least it is planned and expected.

Our decorations are up, most of the gifts purchased, and plans for family fun in the days around Christmas are planned.  We just have this one little thing to get out of the way first.

Monday, October 20, 2014

One Two Three FOUR

Last week, Scarlett turned FOUR!

Can you believe it?  If you're still reading my sporadic updates, you've probably been around a while, and, like me, are completely floored that we are already at 4 years old.

This was the first time we felt like she would appreciate at least some part of it being her birthday.  She loves the "Happy Birthday" song, balloons and cake, so what more did she need?

She woke up to a room and bed filled with balloons...

At school, her friends presented her with handmade cards.  She also walked around a candle to represent her 4 trips around the sun, and shared pictures of her throughout her life.
School cupcakes
That afternoon, her cousin came to play while we put together her birthday present: a new trampoline!  We have been fighting to get her to stop jumping on the couches and beds, and thought a sanctioned, safer jumping space would help.  Then we saw this one on Amazon and we thought it would work well - and it does!

 She can jump to her heart's content in there and I won't worry as much as I do when she's on the couch.

We wrapped it up with more cake - she blew out her candles (with minor help) and dug in!

4 year old Scarlett is a delightful handful.  She is full of energy, and we jsut always hope she will use her powers for good rather than tantrums.  She loves school and her cousin Caleb.  She carries on full conversations in her own babble-speak, but also knows enough words to communicate exactly what (or who) she wants much of the time.  Her favorite word is probably "no"; my favorite of her words is "flower", which she pronounces "wow-ah".  She signs as much as she speaks, and when she puts the two together, we understand her best.  She is getting better at just imitating what she sees or hears, so we hear more from her.  She likes to count and sing.

She's a daredevil.  She climbs on everything, and wants to go as fast as she can.  If we turn our backs, it is not uncommon to find her standing on the kitchen table after climbing up the chairs, or hanging upside down on the bed looking at herself in the mirror.  She has favorites - food (cookies and cake); toys (babies and animals); clothes (pink dresses...sigh.); people (Daddy and Caleb); places (school); shows (Signing Time and Super Simple Songs); books (The Hungry Caterpillar, in which she pretends to eat every food with a little "nom nom nom" as we read).  She likes to be given a choice in what she wears or eats, which is just more of that 4 year old personality coming through.  If she agrees, it goes smoothly; if it is not her idea, we have a battle ahead.  Most of the time, she is quite the charmer.  She smiles, giggles and tickles everyone she meets (even though it sometimes feels like pinching) and loves to hold hands while she walks.

Her best buds.
 This girl amazes us day in and day out.  She surprises her specialists and therapists every time they see her, and those who have been with us since  the beginning take as much joy in her as we do.  We are proud and just plain happy to have her around.

Here's to a year of more firsts.

A few more pictures from the last few weeks...

At our alma mater high school's cancer awareness game.

 Our fourth blood drive was smaller, but we still collected about 40 units of blood.

 Pumpkin patch with the family...which is growing by TWO come Spring when Caleb becomes a big brother to twins!

Walking in with GG

Those sassy hands on out!

Monday, August 25, 2014

Flower Girl

Here is Scarlett's flower girl debut!
At the rehearsal

All glammed up!

With papa

With Best Man Daddy

Uncle Danny and Auntie Allie

Up bright and early the next morning for the first day of school!

Wednesday, August 20, 2014


It's been a long time since I've had a chance to write.  I've gotten several messages asking how she is doing.  Thankfully, we've been busy in all the good ways.  I went through the pictures from the last few month to see what has not made its way here...we'll have to back up a bit.

For Mother's Day, we all went to Reno to visit my great grandma, Scarlett's great-great-grandma. 

We have spent the majority of the summer chasing her - she's everywhere!  This is her using a laundry basket as a stool, as the new stool we bought sits a few feet away.

We got a call one day from another brain tumor momma whom we met at camp.  Her daughter Audrey had recently gotten a play house from the Habitat for Humanity Play House Project.  They were looking for another little one to give a house to...and we were available!  A team from Samsung, as part of their team-building exercise, had two houses ready to go and no kids to give them to.  We were on it!  That evening, we watched as they finished painting, constructed and modified an adorable play house for Scarlett.
Adding her handprint
Checking out her new digs.  They made Scarlett's house wheelchair accessible - not knowing that she wouldn't need that - which allows her to ride her bikes through without slowing down!

Now it is pretty much her favorite hang-out spot.
 She is a big fan of purses.  Her favorite is a retired Seatbelt Bag of mine; she prefers it empty, despite how many times I have showed her that things can go inside.  She swings it over her shoulder and takes off.
 Once my school got out in June, we had several adventures....camping with family was first.  Then a Giant's game at AT&T park, 4th of July parades, and a few perfect-weather beach days.  Chris and I went away for a few days where I attended the I Teach K kindergarten teacher's conference by day, and we explored the city by night.  Grandma stayed home with Scarlett, and got her workout from the little lady!   Scarlett "graduated" from the toddler class at her school, and will be starting the preschool class next week!

The most amazing thing?  We have had only a tiny tiny handful of appointments this summer.  Scarlett was originally scheduled to have surgery in July, but with the seizure activity in June and new medications to balance, we all decided it was best to wait.  Since we left the hospital, we have seen NO seizures.  She has weaned off of some of the medications, and is down to just one mild seizure control med, which is very tolerable for her and us.  If this keeps up, she will have her reconstructive surgery around December.  Until then, I am enjoying her full head of hair...

We haven't gone a day without commenting on how she is developing.  She signs/speaks (usually together) constantly.  She has learned so many new words in the last few months...bus, watermelon, star, night, butterfly, hungry, train, colors, body parts, animals...we stopped counting a while ago.

She is a dancer.  Any music comes on, and she is moving.  I won't say she has great form, but she has enough enthusiasm to cover it.  She jumps, kicks her legs out, stomps, wiggles, shakes and

Beach lounging with Uncle Danny
This weekend, Scarlett will be the flower girl in her Uncle Danny's wedding.  There are several lists of things to do, especially since school starts for Scarlett and me the next day!  We'll be incredibly busy for a few days, but it should be a good time.  I promise I will post a pictures of her in the dress I made for the wedding before Christmas!!
Flower girl preview!
Here's all the videos I could upload - enjoy!!