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.

Back At It

On my own assessment, I've got a pretty decent brave face - I don't think the nausea inducing anxiety shows.  Jonah's not worried at all, and as he was wheeled into the MRI was telling the team how much he loves MRIs. I think it's the sleepy medicine that he loves, but it's all the same to him.

It's easiest to hid the teary eyes by turning the worry into love and pouring it all out.

It's that time again - another surveillance MRI.  They're every 4 months now, so they're spacing out a bit.  I haven't obsessed over this one, nor been very vocal about it because I'm tired of the rollercoaster and expect everyone else is as well.  I just want to go about living our normal life, concerned about our normal life kind of things - I don't want to do this anymore.

This far out from treatment, it's actually easy to be lulled into assuming that everything is going to be fine because it was fine last time.  Because he's doing so well.  Because I can't stand for the results to be anything other than fine.  And then I remember the scare we had in April.  But surely if we've already had our scare we'll be in the clear right?

The impact of Jonah's cancer treatment is in-your-face obvious everyday with the walker, hearing aides, facial palsy, etc, etc.  It makes it easy after this amount of time to accept this as the new normal and only look forward.  It's easy to forget that he's not out of the woods yet.  The first 2 years out of treatment (that will be May 2018 for us) is the period of time mostly likely for recurrence, but there are 5 year survival stats for a reason.  The fear of recurrence is always there.  Then of course, there's the risk of secondary cancers. It's a cruel irony, that the treatment to cure the original cancer puts Jonah at decent risk for a number of secondary cancers that usually present after the 5 year mark.  He will never really be out of the woods.

We will see the team tomorrow for follow up and go from there.  For now there is nothing to do but breath.  Nothing but to trust that the God who showed up in the midst of the storm is also present on this cloudy day in our story.  All of my worry won't change the MRI results - good or bad and so for today I'm back to focusing on breathing.

Hawaii Reboot

 Hawaii is so much like paradise that it breeds extra love among siblings.

Blue Lemonade - it was an eye-opening experience

One morning Noah and I got up and went for a walk.  He's not sure why people go for walks unless they're going somewhere, but was happy with the chance to throw stones into the ocean at the end of our walk.

Just a little reminder of how small the world is.  We ran into Dr. Dobkin, who is the pediatrician who found Jonah's brain tumor.  He has become very dear to us over the past few years as he proved time and time again that his heart is all in to the care of his patients.  Luckily we didn't need any of his services while on vacation, just a nice visit.

Hawaii wouldn't be complete without surfing.

 Jonah and Julia didn't love surfing as much this year, but it was still good for them to get out on the water and give it a try.

 More blue lemonade

 Shave ice is the stuff of Anna's dreams!

 Whale watching.  These are the same whales that we saw in Alaska this summer, migrating to Hawaii for  mating & giving birth.  We choose to believe that these are the exact whales we saw this summer coming to say hello again - made it a little bit more fun.

 When we were on Maui for our honeymoon, we woke up at the before crack of dawn to drive to the top of Haleakala for the sunrise and then a big bike ride down.  That clearly wasn't going to happen this time, so we went up for sunset instead.  It was windy and cold, but memorable.

 Noah & Julia wanted to make puka shell necklaces.  They were less sure about modeling them after they were done.

 Jonah apparently was dressing down his cherry walnut sorbet at dinner one night.  I'm still not sure what it did wrong to deserve such attention.

Everyone went snorkeling this year.  At first Jonah wasn't sold on it, but eventually came around and everyone got to explore under the water.  We even got to swim with a turtle one of the days we went out.

 Pineapple farm tour - it was really cool so see so many pineapple growing in the same spot.  We also got to try fresh pineapple off the plant in a field overlooking the ocean - winning!

 If I was a pineapple, this view would certainly encourage me to grow!

More sibling love - why walk when your brother will carry you?

 Virgin Pina Colada?  Yes please!
 

Shaka - the Hawaiian life suits us and if we could figure out how to stay, maybe we would...


The first time we had planned to go to Hawaii as a family was for my 40th birthday.  Instead, we spent that time in patient at RIC towards the end of Jonah's treatment.  The next time we planned to go to Hawaii, my dad was diagnosed with cancer a few days before we were meant to leave.  We decided to go anyway as my dad was certain nothing would happen in the week we were gone.  He was wrong, things went terribly wrong and I left Hawaii early and was still not able to see him before he died.  Our time in Hawaii a mix of wonderful and hard.  Third time is a charm, and we were back at it for New Years this year.  I am happy to report that this year was sunshine, surfing, snorkeling, whales, pineapples, swimming, laughter, beauty gazing at God's marvelous creation and so much fun.  Our greatest "tragedy" was a splinter.

This trip was everything you hope for from a trip to Hawaii and we are so thankful to have finally had a non-eventful visit.  We loved it so much that Anna and I thought about ways we could stay.  Simon was pretty sure that Groupon wouldn't let him telecommute though so we eventually had to come back.  We will be tucking these special memories away though and holding on until next time.

Wonder

 Wonderland Express at the Chicago Botanic Gardens tradition - check

Groupon Holiday Party tradition - check

 Doing some kind of holiday baking for a cookie exchange or party tradition - check

 Celebrating Jonah's birthday with friends in the messiest way possible tradition - check

Having a fun donut cake instead of a traditional cake - new tradition - TBD

Turning therapists into friends tradition - check!  These are the faces that Jonah sees multiple times a week to work on PT, OT and Speech therapy.  It was so fun to see them all outside of the walls of therapy and hysterical that all of their birthday gifts to Jonah were like secret therapy in gift form.

If you haven't heard of Wonder by this point, you're probably living under a rock.  It is a wonderful book, written by R. J. Palacio, which has since been turned into a movie staring Julia Roberts and Owen Wilson.  The story itself is about a 5th grade boy, Auggie, who has a significant facial deformity, transitioning to public school.  The story is presented from the perspective of Auggie himself, a few of his classmates, his sister and a couple of others; and these perspectives create a picture that comes together of a community's struggle with empathy, compassion and acceptance.  At least that's the Amazon summary of the book.  Perhaps it is no surprise that the story is so much more than that for us - more of a blurry reflection of us.  There is nothing identical, but there is much similar - the story feels familiar even though it is not the same.

Jonah looks different than most kids.  This isn't a shocking revelation to anyone who has followed our story, but it is something that our newly minted 7 year old struggles with sometimes.  His struggle is rarely with his walker, AFOs or even his hearing aides - things that make him clearly different.  His struggle is usually about his face.  Every time he looks in the mirror or at a picture, he sees that his eyes are different sizes, his face isn't symmetrical - he sees the scar of reanimation surgery, the gold weight in his eye lid.  And he goes to the hard places:
                                   "Why don't I look like everyone else?"
                                   "Why did God choose me?"
                                    "It's not fair this happened to me."
                                    "It's hard being different and it makes me sad."
And in those moments, I am jealous of Julia Roberts (who plays Auggie's mom).  She has someone writing out her lines for her as she addresses her pretend child's heartbreak and struggle.  She knows just the right thing to say to smooth over his hurt and insecurity.  If only it were so simple - how do you explain our last 2 1/2 years to a 7 year old?  How do you talk about the brokenness of our world? About how God makes beauty from the ashes and uses hardships to point people towards redemption?  How do you answer questions in a way that a 7 year old can understand, when adults struggle with the same questions for years?  I wish the script writers had the answers for me, as I am simply doing my best because that's all I have to offer.

When art mirrors life, the impact is lasting.  We are busy writing our own story of a boy who wears his extra-ordinariness on the outside, filled with kindness, silliness and love.  Of a boy who's bravery and strength exist in such quantity that they show on the outside for all to see.  Of a boy who's story points people toward God, getting them to think about God and ask different questions than they've asked before.

Especially this Christmas season, if you have not thought of God differently lately - if you've been afraid to ask the hard questions -  then jump in.  Carve a little space in the chaos and the noise and find God.  That is what Christmas is all about, God with us - Immanuel.  You don't have to have a team of script writers to make you sound good, or a heartache tied up in a bow - Immanuel will meet you where you're at and take you as you are, and for that I am grateful because I don't have this all figured out yet either.


Merry Christmas!