Disney

The final straw was Julia's person of the week poster, where without a beat she listed Disney as the place she most wanted to go.  We'd been talking about it on and off for a few years, and with that innocent publication the decision for our spring break destination was made.

                                                   
Tree of Life at Epcot

Peace out - we're on spring break

Jonah was most excited to meet Pluto

Everest in the background, at Animal Kingdom - one of the big kids favorite rides

The Avatar land at Animal Kingdom was amazing to just walk around and admire.  The ride itself was a big hit among the family.  For those a bit more prone to motion sickness (I'm talking about myself) it was a ride best done with your eyes closed as to not have the visual representation of motion in addition to the feel of the motion.  It was worth it though for how much everyone else enjoyed it.

Julia was so excited to meet Doc McStuffins

Family photo outside Turtle Talk with Crush which is a fun interactive show at Epcot

Anna giving Ana the side-eye while they do moose ears

Test Track at Epcot was a big hit with the whole family.  You design your own car and then it's "tested" on the track.  The boys car focused on power and responsiveness.  The girls car focused on efficiency and style.  In the end, the girls car won by 1 point.

Baymax from Big Hero 6 - a movie often watched during Jonah's hospital days

We of course did a princess meal, where Belle greeted us before we went to our table

Germany!

Julia had a whirl at the Bibbity Bobbity Boutique in Cinderella's castle.  It was everything she wanted it to be and came with souvenirs so we can recreate the magic at home.

Anna was really into the rides

Anna was most excited to meet Stitch

Jonah, Julia and Noah all did a little Jedi training

We may not be a Star Wars family, but the kids were more than happy to swing swords at bad guys

Family loving

How could we resist Olaf?

The kids were thoroughly grossed out

Classic Magic Kingdom.  Spring break at Disney is apparently not just a week, but from early March-mid April so the crowds were pretty thick.

They loved the roller coaster type rides!

After Julia's princess makeover they did a little photo shoot, for which she was more than willing to participate.  Julia was just her sweet self the whole trip.  Disney gives out birthday pins to people celebrating at the park and Julia never missed a chance to wish people "Happy Birthday!"

The rock n' roll roller coaster was the scariest, but most awesome of the coasters - according to the rating team

We had a friend, Roberta, from My VIP Tour, help show us the ropes at each park.  She was such a good sport and always up for whatever, including silly pictures at Hollywood Studios.

Chef Mickey - a classic experience

As to be expected - we knew that lots of people we knew were going to be a Disney.  The crazy thing is, the only time we ran into them was when we didn't try.  If we tried to plan it, it didn't work.  This is Ms. Kim, Jonah's speech therapist that we ran into on our way out of Magic Kingdom as they were on their way in.

Julia did not like getting wet on Kali River Rapids in Animal Kingdom

Merry-go-rounds can be scary

The photo guy called Noah his twin and wanted his own picture taken.  Bald heads of the world unite!

Brave the Shave - After

The fundraising effort doesn't ever close, so feel free to donate at any point (https://www.stbaldricks.org/participants/mypage/965263/2018).

Picture Update

In conversations lately, people been asking how we're doing as the blog has been strangely quiet.  The answer is always the same, everyone is good, we're just busy.  We're that boring type of busy though - the kind of busy that is explained by sports practices, school, work, therapy  and then a little something special here and there.  

The best way to catch you up on all the activity without boring you to tears, here you go.......

Julia was Star Student of the Week where she told everyone that she wants to be a mom when she grows up and that she's really good at giving hugs.  Love that girl!

Anna wanted a winter themed birthday cake - in a moment of creativity, I think I was able to deliver (with a little help from Liz).

For her birthday, Anna collected donations for Ronald McDonald House instead of birthday presents. She needed a little convincing but came around to the idea and was able to help brighten the day for other kids, which is the best gift she could get.

Noah performed in his first band concert.  I have to say, my expectations for a 5th grade band concert were pretty low, which turned out to be unfair, as they did a great job!

We haven't had much snow this winter, but the kids had a great time with the snow that we did have.

Kid pile!

Daddy Daughter Dance - Simon got to go twice to have special time with each girl.  Anna even let me curl her hair this year!

Jonah, just keeping the friendly skies safe.  He and I went to Colorado for a weekend and the folks on Spirit Airline were so welcoming to us.

Uncle Peter recently moved to Bermuda, so Simon and Noah paid him a housewarming welcome.

Jonah joined me on a trip to Colorado to see the family.  We spent the day with Grandma (my mom) in her nursing home.  Here, she and Jonah are talking about which bird they think is the cutest.

Potentially my last chance to be mystery reader.  This special little bit of fun seems to end after pre-k and I didn't want to miss my chance.  I was so happy to be able to share one of our favorite books, Smitten, with Julia's class.

Simon and I went to a fundraiser for Cal's Angels.  Cal's is a local cancer charity focusing on wishes, awareness and research. They are the group that bought Jonah's bike for him and also the group that we pair up with for the Chicago marathon.  Simon thought this to be the perfect event to break out his kilt for.  Was he a true Scotsman?  You'll never know.......

At the Cal's gala, they put the kids names up in stars - like a walk of fame, but on the walls.  It was so special to see Jonah's name included.

We recently discovered GLASA, which is a local adaptive sports organization.  They are amazing, and offer so many different sporting options to kids with physical disabilities.  Jonah's first GLASA sport was sled hockey which he really enjoyed.

This is our Katie.  She started as the APN who partnered with us during Jonah's treatment.  Somewhere along the way she because so much more than that.  The toll of treating kids with cancer is high, and Katie has made a personal decision to leave Lurie for a more general practice type of role.  Her departure is certainly a loss to us, but will just necessitate our connecting outside of the walls of Lurie.  We joke that we'll never be able to get rid of each other.

Julia has been loosing teeth like a crazy person.  By Christmas, we expect she'll have her 2 front teeth, but for now it's funny to have her try and talk about Sally selling seashells by the seashore.

Jonah at GLASA wheelchair basketball.  Of his two GLASA sports, although he liked them both, basketball is in the lead.  We'll see if that sticks after Jonah does a GLASA sports camp this summer, but one thing is for sure - sports are in his future!

For mum's birthday we all got to go see Hamilton finally.  It was great!!!!

Jonah and baby Bennett, during our visit in Colorado

Brave the Shave

Look at that thick head of unruly hair just waiting to be shaved off.

This is Jonah right before we shaved his head, in August 2015.  His hair had started to fall out from the chemo and we decided it would be an easier emotional toll to get it all done with at once.    

This is Jonah right after we shaved his head.  This was the bald shiny head that we came to know and love during his 10 months of treatment.  It wasn't until he was done with treatment in May 2016 that his hair started to grow back.

This is Jonah today.  Look at that full head of messy Justin Bieber hair.

When you're thrust into the cancer world, there are so many scripts that play in your head of how things are supposed to go.  Cancer cliche things - nausea, vomiting, hair loss and on and on.  One of the scripts that played out for me was around hair loss and siblings.  I'd seen it play out before with other families - as a sign of solidarity, when the sick child lost their hair, a sibling would willingly shave their hair so the sick child wouldn't feel alone.  It was beautiful and emotional every time.

When it was our turn to write the hair loss portion of our story, we followed a different script.  The time to shave Jonah's head was undeniable.  Every time we lifted him from bed, his pillow case was covered in bright blond flossy strands.  Snuggling him in bed required brushing off your shirt when you got up.  It was a hard cliche for me to walk through, and I desperately wanted to follow the script of sibling solidarity to make it easier.  The thing is, the siblings weren't ready.  They were young (8, 6 & 2) and we'd only been following the new script for about 5 weeks.  At much as we tried to keep the expectation, the despair or the hope for a certain script out of our voices when we asked the other kids, I'm sure they knew it was there and they dug their heals in.  None more so than Noah.  He of course felt the most pressure - being oldest and being a boy, but he wasn't ready and he stood his ground.

There are certain parts of the cancer journey that are seared into my memory banks.  This day is one of them.  I wasn't able to be in the room during the shaving.  I left my son, with a thinning head of hair, to sob quietly in the hallway while Simon made the transition.  I returned to a little boy who had shed the last bit of his "healthy" disguise.  I returned to a little boy who looked as sick as he was.

How glorious it is to have that day so far in the review view mirror.  The progress our family has made in the last 2 1/2 years is something we thank God for everyday.  It is a literal miracle that we've come this far.  Jonah survived treatment, his scans are stable and he's in kindergarten doing normal kid things, looking better and better everyday.  Our family is together, in rhythms that are normal and life-giving.

And now, Noah's ready.  He's shaving his head, in solidarity with his brother.  In solidarity with all the kids we know and don't know who are bald right now because of their cancer battle.  He's shaving his head to help change the face of cancer for kids in the future.  To support research for better treatments - treatments that cure the cancer without so many devastating side effects.

We couldn't be more proud of Noah, because not only is he doing a noble thing, but because in the act of doing it, he is demonstrating how much he has personally grown and worked through related to our cancer story.  This is different than the script I was trying to write in August 2015, but this script is healthy, without expectation or pressure.  This script is of support, love and encouragement - just the way it's supposed to be.

For the details - Noah will be braving the shave with St. Baldrick's on Thursday, March 22 at a local elementary school.  If you would consider donating to his cause, I know that this fundraising effort is proving to him that he can make a difference. (https://www.stbaldricks.org/participants/mypage/965263/2018/)

It should also be noted, that they're all ready.  They're all ready to make a difference in a way that's tangible to them.  Anna has been growing her hair for over a year now to be able to make a 12 inch donation to Wigs For Kids - an organization that provides cancer kids (among other conditions, but they started with cancer) free wigs.  More will come on that once she finally crosses that length threshold - maybe this summer.  Julia's getting ready too.  She too talks about donating her hair, so stay tuned for those details.

In the end, the thing that's true about cancer scripts is that they never actually play out the way you think they should.  During a time in life when you want ultimate and supreme control, you realize you have none.  It's been a good lesson to take into the post-treatment life too.  I am so thankful that we get to watch our script unfold this way.