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.