Wednesday, July 31, 2013

Holding Pattern

First things first: Scarlett had her MRI Monday, and we heard Tuesday that it is all clear.  Hooray!  Three months until the next.
Reading and singing while she waits for MRI - the nurses were loving her goofiness while she waited.

Unfortunately, she is neutropenic.  Her white blood cell count is very low, which means she is not yet ready for the next dose of chemo.  This happened regularly in her first chemo adventure, but it's the first time with this regimen.  Luckily, you'd never know she was sick - she has been the most active, most pleasant and most lovely she has been in months.  No puking, no constipation, minimal tantrums - just Scarlett.  Her doctor echoed my own thoughts - did we even give her the chemo?!  Those low blood counts prove it, for sure.

Until her counts recover, we wait for Round 8 to begin.  Of course, it's the last round, so we are more than ready for it to start so that it can END.  I was hoping we would be done and ready for a fresh start when school begins at the end of the August.  Now, maybe not.  We're on Scarlett time, so it will happen when it happens.

This may be the picture of all pictures...Scarlett climbed her way right into the toilet.  She was happy, splashing around.  We took the picture, put her directly into the tub, and then got a baby-proofing lock.

Monkey on the monkey bars (with daddy's help!)

Insisting on putting both legs in one hole...and taking this picture brought the lost shoe to my attention.  Never found that shoe.
It's been great being home and enjoying some time together.  Our weeks are still busy - PT, OT, labs or chemo, MRIs, and several other appointments on the horizon - but we can all sleep in and be a little more relaxed, and that goes a long way.

We took a little trip to visit some friends last week.  We met them at our first family camp for pediatric brain tumor patients, and we immediately connected.  Their son endured a very aggressive treatment for a brain tumor when he was 2 - he's now 17!  Their daughter is also a counselor at camp, and Scarlett loves them all.  They made us feel welcome and comfortable at our first camp, and then - surprise! - they were at the second camp, too!  After spending several weekends together at camps, they invited us to come stay at their house in the mountains.  We had a great time visiting and talking about life before, during and after treatment.  There are just some things that only someone who had been through it can understand, so it is a very special friendship to have.

Finally, I would like to ask everyone to keep a few kids in your hearts.  Phoebe's family just learned that her tumor has returned, and there are few further treatments to consider.  On top of that, she got a nasty infection that gave them a big scare.  They've had a rough few days, but it sounds like things are leveling out.  Abby also has had a recurrence, and amidst her next treatment, her family is enduring other stressful issues as well.  Both of these lovely little girls deserve so much more than this nasty disease had given them.

Saturday, July 20, 2013

33 Months

Miss Scarlett is 33 months old, closing in on the big 3!
Digging in the sand at Santa Cruz

She loves to play with cars, trucks and trains - anything with wheels.  She pushes them all over the house.  She wants to move - swing, ride, walk, crawl, anything to not be still.  She has become quite a daredevil, climbing on to chairs and tables, even dragging her toys around to use as step stools.  When she is on the move, she has no fear, which causes her knees and arms to be very bruised, toes blistered and gave her a lovely skinned nose last week.  She is also learning to give hugs and be very cuddly, which we all love!
Tolerating swimming lessons with Mommy
She is hovering at right about 25 pounds - we're hoping to make some progress on growth again once she finishes chemo.  She is about 32 inches tall.  She teeters between 18 and 24 month clothes - 18 month are usually a little short, but her waist is too skinny for most 24 months.  Her feet are still an itsy bitsy size 5!
Snuggling with Uncle Danny
Her language skills are blowing up!  She can independently sign many things: mom, dad, want, more, eat, cookie, cracker, all done, bath, swing, please, shoe, cheerio.  She is getting better at signing along with us too - if we model it, she tries it pretty quickly (especially if it might get her a bite of something yummy or a toy she wants!)  She has even begun putting signs together to make sentences - WANT SWING PLEASE, MORE CHEERIO PLEASE (we're pushing PLEASE lately).  She is fascinated with being able to tell us what she wants - it is a very empowering skill for her right now.  She is showing herself to be a listener and a signer - she hears us say something, and then signs her response.  She rarely responds to our signs, and doesn't speak much (though she makes herself heard!).  She is remembering more of what she experiences, like yesterday, when she saw the carousel at the beach, it was clear she knew what it was from her ride a few weeks ago (immediately signing WANT WANT WANT MORE MORE WANT WANT!) She is such an interesting little creature to watch learn and adapt to how her brain and body are taking in everything around her!

Unfortunately, it also comes with a downside - the girl is INSISTENT.  If she wants it, she wants it NOW.  She has a breakdown nearly every day about wanting to go out to her swing.  And boy, can she throw a fit.  She has mastered the head-throwing, screaming, kicking and boneless spaghetti legs that toddlers are known for.  We thought we might escape the tantrum 2's, but just like everything else, she is making sure she gets her chance.

We've been working a lot in PT on walking.  She has her walker that she uses almost every day.  We have been trying to take her places where it is safe for her to walk around - a handicap-accessible playground, parks, anywhere where she can have some freedom to explore.  
She also got a new accessory this month - SMO (Supra-Malleolar Orthosis) braces for her ankles.  She wears them most days, and anytime she will be walking.  They help to stabilize her ankles from rolling inward, and help point her foot straight out.  There is a lot of debate about why her feet are doing this - delayed motor development, brain damage from surgery and stroke, months of hospitalization, and some specific chemo drugs can all have an impact on how her feet and muscles develop.  Luckily, she does not seem to mind them, lifting up her little foot every time she sees them.

We still struggle with eating.  It is a battle every day.  She likes to eat, likes to play with food, but she struggles to swallow and cannot ingest enough.  We have decided this is a battle we are not going to fight until after chemo, when hopefully her appetite and taste come back.  Her g-tube works great for getting in the nutrition she needs for now.  Until then, we are working on teacher her not throwing the requested cheerios on the floor, and swallowing anything we can get her to take, even if it is only ice cream, whipped cream or pudding.

We are nearing the end of her current treatment.  By mid-August, the plan is to finish chemo and be back on the road to remission.  She has an MRI at the end of the month, which will hopefully show nothing new.  There are follow up appointments with her surgeon, where we are quite sure we will be discussing  her next phases of reconstructive surgery - her skull has yet to heal from the original surgeries more than two years ago. She will be seeing the ophthalmologist and GI doctors soon too, in a effort to continue investigating her vision and swallowing struggles.

Today we are headed to our local Relay For Life, where Scarlett can show everyone a thing or two about what it means to survive cancer!

Monday, July 15, 2013

Round 7 and the End of School

First, a few rogue pictures from the archives...Scarlett got to watch the local parade on July 4th.  She loved all the cars, and everyone who walked by stopped to say hello to her.  It was very hot, but she loved every minute of it!

She kept these on for a total of about 2 minutes.
Waving her flag from a parading boy scout.
Thursday night, we all went to her school for Graduation.  All the children in the school participate in graduation, whether they are moving to a new class, off to kindergarten or are staying in the same class, like Scarlett.
Parading around the school with Mylene, who loves to sign with Scarlett.
Walking on to the stage with Micah, one of her classroom aides.

She loves her teacher Kim!
The next morning, she had chemo.  This Round 7, part 2, which means only ONE MORE month!  This time has been probably the easiest yet, which is strange, since each month has been progressively worse.  She made it through the weekend without throwing up at all, which is quite an accomplishment.  It is taking a toll on her mood though - she's been crabby and needed extra naps.  No matter though - we'll take an easy one when we can!  

Now, she's out of school for a few weeks, and I am done with summer school this week, so we will have our very first no-work-no-school summer break!  

Wednesday, July 3, 2013

San Diego

We just got back from our little summer vacation to San Diego.  It was a fun little getaway from our regular business!

We flew down on Thursday.  It was a short flight from Oakland, and Scarlett did very well on the flight, though she was a little unsure of it all.

The hotel I booked was just a good deal online, but it was better than we expected!  There was a (free!) shuttle to/from the airport, zoo and tourist areas, and was across the street from the maritime museums and San Diego harbor, so it had nice views and plenty to see and do within walking distance.

Eating breakfast

On the shuttle bus - fascinated by the freedom of no car seat!

Lounging on the hotel balcony
Seeing the ships across from the hotel

On Friday morning, we packed up to go to the San Diego Zoo.  It's considered one of the best zoos in the country, and it is HUGE.  Chris and I later decided we probably could not have seen everything on our own, so adding a crabby 2 year old really hurt our efficiency.  It was hot, and so busy that there was almost no place for Scarlett to be out of the stroller or our arms, so she was feeling trapped.  She did not get much out of the animal sights, but we had a different reason to be there, anyway...

Looking over the edge of he SkyTram
The hyena who stared us down on the guided tour
The baby giraffe
The Scarlett-friendly petting zoo
The polar bears put on quite a show for us!
We waited in a very long, very hot line to see some of the few pandas - and the only panda cub - living in the US

The animals were fun, but our real goal was to meet some friends at the zoo.  Two years ago, just a day or two before Scarlett's tumor was removed, I got a message from Michelle, telling me to not give up, that her son Riley and a few other kids had survived the same tumor.  It was the first time anyone had told me that she really might live.  It was a very powerful moment, and all through chemo, and over the last two years I referred to her when I had questions about treatment questions, and just to follow Riley's progress. 

Well, Mr. Riley is now 4, and was granted a Make-a-Wish trip to San Diego from their home in North Carolina.  He got to visit all the fun stuff in San Diego - Sea World, Legoland, the zoo and Safari Park. They invited us to meet them somewhere, since it's the closest to us they have ever been.  We were thrilled, and booked it.  So, when we got to the zoo, I was much more entertained by Riley and his big sister Lizzie who made sure Scarlett stayed happy.

And it got better: in the evening, a third family met us there!  Lily is also 4, and her family lives in Southern California, close enough to drop into the zoo whenever they want.  They came in for dinner, an we got all three kids together, plus all the parents and siblings.  Lily and her twin brother Sammy and big sister Danika had fun playing with Lizzie, Riley and Scarlett, so everyone was having a blast.

Riley, Scarlett and Lily - survivors against all odds
Scarlett and Lily
All the wiggly kids!
We parents sat around and compared stories: all our kids were diagnosed as little babies (Scarlett and Riley both at 9 weeks, Lily at 4 months), as most all congenital tumors tend to be; we were all told that treatment was unlikely to work and to go to hospice; Scarlett and Riley were on the same St. Jude treatment for the first year, while Lily had a different plan.  Riley and Lily have both been cancer-free since their original treatments.  All three kids still have therapies of some sort, and we all hold our breath every few months when any of them get MRIs.

Last year, Lily's dad Magnus started a Facebook group for our little group, and we have found about 12 kids who are living after this same tumor: Connor, George, Abby, Riley, Lily, Scarlett, Sinead, Faylynn, Lillee Jean and few more.  They are fabulous kids, and have amazing parents whom I hope to meet in the future. It's an amazing this to find someone who has been to the battlefield like we have; all having had the same tumor is like a badge of honor - we were all told we would probably never find someone else with the same, and the doctors are all shocked that we know so many!

We had to leave the zoo far earlier than we wanted to to catch our shuttle, but we're hoping to get together with everyone again sometime.  Someone mentioned taking a cruise vacation together - I say YES!

And, just for those who might be curious, Make-a-Wish is not just for kids who are dying, as many people think.  Kids with life-threatening illnesses are eligible for wishes once they are 2.5 years old...which means Scarlett will get one some day, too!  Our plan is to wait until she is able to have more of a say in what she would like; we're hoping we get the chance to wait as long as we can.  We have one friend who waited 15 years after diagnosis, and their son chose a Mediterranean Cruise...sounds like a good plan to me!

The last day of our trip did not go as planned, since the beach was having riptides and jellyfish warnings, so we just wandered through some of the nearby areas until we were all too hot and tired.  Scarlett zonked out early, so we watched the free HBO and ate take-out in our room - not the most luxurious vacation, but we enjoyed the chance to relax.

A playground with sand had to be our stand-in beach
Trying to find some breeze at Seaport Village
Passed out!
Hotel bed head
The next morning, we got a call from our airline that our flight was delayed - due to fog!  That's something we basically expect in San Francisco, but not after 85 degrees in sunny San Diego!  It turned out to be a short delay, but any additional minutes of waiting in the cramped and crowded airport terminal was too many.  There were no seats since several flights were delayed, so we sat on the floor, and paced with a screamy, tired, out-of-sorts toddler - I'm sure everyone there was scared to sit near her on the plane!!

A brief smile between screams while waiting in the airport
She did fine once we were settled on the plane, and was happy to be back home.  Now we're back to our same schedule for a few more days - Scarlett's school year ends next week, and my summer school class ends the following week.  After that, we will have our very first taste of a summer break - no school or work for anyone!  I can't wait!