What I Wish You Knew About Pediatric Cancer

About a week ago, a fellow cancer mom, preparing for pediatric cancer awareness month,  polled the Lurie oncology community - in a sentence or two, what is something you want people to know about pediatric cancer.  There were a lot of answers, but a consistent theme - pediatric cancer changes everything.

Pediatric cancer changes everything.  It seems like such hyperbole that it can't possibly be true, and yet it is.

It has changed school for all 4 of the kids.  Everything about school is different for Jonah, with an aide and lots of support - those things are obvious.  It's different for the other 3 though, having Jonah be a real person to their friends instead of a story.  Being the sibling of "that" kid.  It's striking a balance between having Jonah's back at school and also not being overly responsible for him.  It's about taking a different bus so that they can all ride together, or not taking a bus at all because it's easier to drive Jonah to and from school.

It has changed family recreation for us.  No longer can our family take a leisurely stroll to "duck pond" down the road - it's too far for Jonah to walk, but it seems silly to put him in the stroller/wheelchair.  Taking a neighborhood bike ride takes extra effort.  We have been lucky to find some adaptive sports organizations that allow for activity, but we've had to look hard and drive far to make those things happen.  It's about siblings coming to therapy after school with Jonah so that they can be dropped off at their sports practices later.

It has changed church for our family.  Jonah is not appropriate for our Special Friend's ministry (it's for kids with special needs, but we've found that there is a large autistic population and that Jonah does better with more traditional peers), but he can't be in regular Promiseland (Sunday school) without an aide.  We have a dedicated and loving aide, but when she needs to take a little time off, Simon or I need to skip church to be with him to ensure he's safe.  It's about watching for our number to be called during church in case there was an emergency, and being careful to not overstay the social time after church least Jonah get too rough playing with the other kids and get hurt.

It has changed social gatherings with friends.  Gone are the days of letting the kids all run about carefree while the adults chat.  Jonah can't keep up and frequently comes to visit with the adults trying to entice them to come play with him.  It's about asking other kids to slow down their play to include Jonah.  It's about not making Jonah seem like a chore to include.  It's about adults intentionally stepping away to play.  This dynamic is especially hard in the summer when there's playgrounds and sports and endless running outside.

It has changed our casualness towards health issues.  This certainly applies to Jonah's random aches and pains, but also those of our other kids.  It's funny because we've developed a strong "not serious" radar, but there are other things that are just weird - probably not serious - that cause undue pause.  When Jonah has a headache or throws up, it's about talking ourselves off the ledge of panic.  It's about taking deep breaths during scan time, even after being at this for a few years.

It has also changed our perspective.  Sure sometimes we get stressed out about silly things, but we're quick to come back to remembering what matters most.  We know that experiences together trump things and that each moment together is a gift to be cherished.  We know that life is too short to wait to live it.  We know that when faced with a decision to travel or stay, we're going to travel and make memories and moments to remember.  We know that most of the things that we get wound up about don't really matter and that it's easier to let them go and hold onto the stuff that does matter - family, faith, friends.  We know that God walks through the hard, showing up over and over again in ways we could never imagine.  We have learned to develop eyes and hearts that can see God even in the darkest of darks, and we're learning to see Him in the everyday ordinary as well.  We know and are learning that God is the same before Jonah got sick, while he was in the fight of treatment and in whatever tomorrow holds.

I wish that I could say that this is the comprehensive list of all the things that pediatric cancer changes, but this isn't everything - just a sampling.  This is the other side of the statistics that you'll see posted this month about pediatric cancer.  This is our 100%, and the 100% of every family touched by pediatric cancer.  Everything is different.

Everyday Monumental Occasions

Noah is starting his last year of elementary school with Mrs. Harris as his teacher.

It should be noted that Anna's first day of school was actually the second day of school thanks to an early encounter with strep.  Anna, and her teacher, Mrs. Mallon, are hoping that this is a one and done strep year for Anna.

Jonah has started his year  with Mrs. Fredell, the same 1st grade teacher that Noah & Anna both had.  How do we get so luck?

We are a family that has always celebrated milestones - all the traditional baby milestones, sporting events, starts of school, starts of summer, learning to ride a bike without training wheels and on and on.  I am slowly coming to terms with the fact that any milestone for Jonah holds more weight for me.  I have an appreciation for the fact that these are all milestones that almost were not -  that these are milestones that we have fought with all of our being to get to.

Jonah started first grade this year in the public school, in a general education setting.  This is no small feat to facilitate.  Jonah has a 57 page IEP document and a team of 14 people to ensure that he is kept safe and is given all of the support he needs to be as successful as he can be in school.  This is a big letting go for me, and everyday I have to stop myself from creeping around outside the windows of the school to peer inside and see how he's doing.

We have talked to Jonah's team, and laid it out.  The problems and challenges that we will have to resolve and overcome in Jonah's education are the problems and challenges we prayed to be able to solve.  Life would be simpler without these problems and challenges, but that would mean that we wouldn't have Jonah to be solving these things for.  We will never loose sight of being grateful for the chance and reason to solve these.  We have heard and done our hardest of hards, and there isn't anything an educator can say that will be too hard to hear, because, if they're talking to us, that means Jonah is still in the game.

It has been a long while since we have affirmed the verse that carried us through Jonah's treatment, but even in the everyday monumental occasions is it true - "Be strong and courageous, do not be afraid, do not be discouraged, for the Lord your God is with you wherever you go" (loose recall of Joshua 1:9).  As we embrace this exciting new milestone, we again have the opportunity to practice being strong and courageous - different reasons for all of us.  We have the chance to remember how faithful God was to us before and use that past to fight back being afraid or discouraged - knowing that God is journeying along with us.  Jonah going to 1st grade is as much about Jonah as it is about Noah & Anna having their brother in school with them, about Julia finding herself without being together with Jonah all the time, about us, as parents trusting enough to build relationships with his team and letting them care for him too.  Jonah going to 1st grade is about celebrating the everyday monumental for all of us.

Summer Portraits

The past couple of summers we have been blessed to have my great friend and amazing photographer, Amy Murgatroyd, take our family pictures in New Jersey.  This year, Amy wasn't able to be in New Jersey with us, but we were luck enough to find Darcy Kiefel in Winter Park, Colorado to take pictures with the extended family.  

We had scheduled pictures to happen during the "golden hour", a photographers favorite, but the weather forecast wasn't great for the evening, so instead we were out in the hot midday sun.  Given the conditions, we got some great shots.  Here is a sampling of the many great moments that were captured that day.

Summer Download

It's hard to believe that summer is over and we're onto the school year already!  It feels a little unjust that the kids are back to school the middle of August, but, alas, the school district did not personally consult me about their schedule and I just don't have homeschooling in me.  Although we didn't travel the world this summer, we had a great time and made lots of fun memories!  Here are some of the highlights.....

 Julia did great at her dance recital and really loved getting to take part in the daddy daughter dance this year. 

Sister from another mister??  I mean, if you can have a brother from another mother, can't you have a sister from another mister?

Kids tried east coast surfing in New Jersey.  Let's just say that it's not as easy as surfing in Hawaii, but they had fun trying it out.

Look at those fully relaxed and happy summer smiles.

The kids from our New Jersey crowd.  It's hard to believe that this was our 10th year in Avalon.  This part of the world, and these families, have a secure piece of our heart. 

On the way home from New Jersey we stopped in Hersey Pennsylvania and made our own chocolate bars.  

Noah & Anna sent a long weekend in Springfield with Granny and learned all about the Land of Lincoln.

Jonah started horseback riding therapy this summer.  He loves it!  It's perfect sneaky therapy for him because he loves animals so much, he doesn't even realize he's working!

We kind of went to a Gavin DeGraw/Goo Goo Dolls concert sponsored by Cal's Angles with these lovely friends.  In reality we waiting in a food truck line for all of Gavin DeGraw's set, just to be told they'd run out of food.  We dejectedly took our seat, just in time to be cleared out for inclement weather before the Goo Goo Dolls went on.  The concert aspect was a bit disappointing, but we made memories that will last a lifetime!

Cancer parents unite at the Cal's Angels concert.  Each of these faces represent a very personal encounter with pediatric cancer.  About half these families have lost a child to cancer.  It is because of that, that we will work every September to raise awareness, and raise money for research.

Jonah did a walking intensive through Easter Seals this summer.  He worked really hard at improving skills that support walking and we were introduced to "the spider" which was a great way for Jonah to practice finding his balance in a safe manner.  He came out of the intensive stronger and with greater endurance so it was time well spent.

Our beloved friend and former APN, Katie came and hung out for an afternoon.  There was game playing and outside fun to be had, and it was great to be able to catch up.

We went to Winter Park for a week and coordinated a bunch of activities with an adaptive sports organization called NSCD.  They facilitated a lot of fun outdoor events for us, which included rock climbing which we were all able to do.

Anna has been doing indoor rock climbing for a year.  This outdoor rock climbing was like her recital - she smoked us all by getting all the way to the top.  You may not be able to see that spot of girl up there, but this was the best my iPhone could do.  We were so proud of her, and the climbing staff was very impressed.

My baby nephew, Bennett, in Colorado.  He is like a mini of my brother, which is super sweet. 

Mom was able to join us for the week in Winter Park.  She runs unusually cold - don't let her attire confuse you, it was about  78 and sunny in this picture.

NSCD made it possible for us to go white water rafting.  Seriously, my 70+ mom with Alzheimers and Jonah rafting in Colorado might have been my highlight of the whole trip!

I am a beach girl over a mountain girl any day, but even I have to admit that there is beauty in the mountains to be appreciated.  This was the view from our front yard of the house we rented.

 Rafting action shots!  Check out my mom's  celebratory hand!  

A belated birthday celebration for Noah.  After considering all of the options, he really just wanted a backyard party with his friends.  We put an outdoor movie on, but really they just wanted to fun around and play.  It's a sweet time - 11 - they're taking steps towards being real independent people, but they're still a bit of sweet innocence in them still.  You can start to see who they might become while still seeing the little kid in them. 

In a sweet unexpected surprise, our lovely friends, the Murgatoryds, got stranded at O'Hare on their way back to Boston.  It was a bit inconvenient for their getting-back-on-track-after-vacation schedule, but it was a great win for us!  These are normally friends we get to see in New Jersey, but they were actually in Stockholm this summer.  Clearly we were meant to be together this summer.  God knew that we couldn't go 2 years in between visits, and if that means a missed connection in O'Hare, so be it.

Last summer we went to Boston, this summer Boston came to us.  The same weekend that Murgatroyds had their surprise visit, we have a planned visit with the Bergans.  Audrey was my first real boss many moons ago and I used to babysit her kids when they were teeny tiny.  Her daughter, Sydney, a high school senior (not pictured because she was feeling sick) participated in a journalism program at Northwestern this summer, so we got to see the whole family when they came to get her.  We've all got our fingers crossed that Syd will end up at Northwestern for college so that this can be the first of many visits through the years!