Survivorship

Check out that hair!!  Dude is too cool for school!

This season, Noah started playing goalie for soccer.  It's turned out to be a pretty good fit for him (even if it's stressful for me) and I expect more goalie play in the future for him.

When Jonah saw himself in the mirror, he made his most serious face and then told me that he looked good - like a tough pirate.  Toughest pirate I know!

Through Cal's Angles, we were paired with Kate for the Chicago Marathon.  She ran in Jonah's honor, and it has been our honor to get to know Kate and her family.  She killed it on a hot Chicago Marathon day and we couldn't be prouder.

Our fun Chicago Marathon signs.

Jonah and Julia could only handle so much cheering at the marathon and were happy to hang out in the shade for a bit too.

Noah wasn't our only soccer player this season.  The jury is still out as to if Julia will play again, but she felt like a "big kid" getting to play this year.

Jonah snuggling Katie after an audiology appointment.  This love is real! 

Jonah and a school friend took a break during recess to cloud gaze with Mrs. Nenninger.

Halloween - a police man, Strawberry Shortcake, Rob Gronkowski from the Patriots and Evie from Disney Descendants

Three generations - a visit with mom as well as Uncle Scott & Aunt Ericka's baby shower

After sharing all of the picture-worthy moments our family has had this fall, I guess I should at least give words to the other stuff.

After completing oncology treatment, rightfully so, you celebrate.  The journey behind you was impossibly difficult, scattered with fear, anxiety, unthinkable decisions and experiences that everyone involved will carry with them forever.  What a joy - what a relief to have that all in the rearview mirror.

Statistically, surviving pediatric cancer is likely.  Although treatment options and research in pediatrics are limited, doctors and researchers are trying their best to adapt adult treatments to make them suitable for children and they are clearly having some success as survival rates climb.  What does it mean to survive through?

Surviving treatment looks different for each child - for some lucky few, they move forward almost completely unscarred.  Most however, bear their survivorship with a myriad of longterm challenges and concerns.  As Jonah falls into the latter category, I, as a parent, have been trying to navigate what it means to walk the path of survivorship with Jonah while beating back the shadow of fear of recurrence around every corner.  This fall is giving me lots of practice.

The most obvious and easiest type of practice has been around IEP/ISP planning (special education planning) for Jonah's kindergarten year and thinking about 1st grade.  These conversations and decisions are the ones we prayed to be allowed to have while in treatment.  We are well aquatinted with the physical and academic deficits that treatment has left Jonah with and so although there is "hard" in learning these new ropes, we remain thankful to have these "problems".

The more ambiguous practice has been around Jonah's general health.  With the start of school, Jonah seems to be experiencing more GI issues.  There's been some new reflux, some morning nausea that seems tied to hunger and occasional vomiting.  There's also the intermittent fatigue and wobbliness that come into play - likely tied to a new schedule, but we don't know for sure.  The reflux is consistent, but the nausea, vomiting, fatigue and wobble come in waves that last just long enough to almost send me into full blown panic and we are on another rising tide.  This is the road - dealing with health issues, trying to tease out - is this a treatment side effect, something unique to Jonah or something to worry about.  Certainly if one of my other children was experiencing regular morning nausea and had thrown up at school 4-5 time in 10 weeks I would be worried; but with Jonah it's less clear that we should be worried and yet more obvious all at the same time.

And so here I am - trying to appear normal on the outside - trying to appear calm, while inside I'm reading every action and complaint Jonah makes and trying to filter it into a cause, finding some reasonable explanation.  I try and decide if I should immediately page the oncologist on call and demand an MRI, or if I need to take a deep breath and just wait a few more days for things to resolve.  This is the other cost of survivorship - beyond the hearing aides, walkers and therapy - knowing what to do with ambiguous health issues.  Figuring out the line between justifiable panic and being a hypochondriac for your child.  This struggle comes when the worst has already happened.  Those nightmare diagnoses that parents worry about, that never come true - they've already come true for us and this is what surviving them looks like.

As we navigate the path of survivorship, I've found my mind wandering - wondering who Jonah would be had cancer not touched him, wondering what he would be like and look like.  Would he be good at soccer since even now he longs to play it?  Would his hair still be bright blonde or would it be darkening up?  What books would he like to read as a first grader?  Somehow, wondering all of this feels disloyal to the Jonah we have today.  With every fiber of my being, I am thankful for Jonah and grateful everyday that he is part of our family - we all fought hard to get him to today.  And, I guess this is part of survivorship too, being grateful for the today while wondering about how things might have been.  It's about finding the beauty, the redemption and the hope in the story that God is writing with today.  And so, as with every step of this journey, we trust God to light the next step in navigating survivorship.  We long for the whole path to be lit, but we will trust enough to take the next step, whatever that means.