CHASE AWAY CANCER

Keeping It Interesting

This one… he likes to keep it interesting, doesn’t he? We spent yesterday morning talking with his endocrine team after some really wild labs.

Chase’s numbers are suddenly kind of crazy and it could be for a lot of different reasons, but the most important and immediate concern is getting his levels back under control – and quickly.

You see, the longer his levels are all over the place, the more likely his thyroid-free body is to create a favorable environment for thyroid cancer re-growth – in his lymph nodes, especially. [spoiler alert: we *super* don’t want that]

So for now, the plan is to make immediate changes to the medications that are helping his body regulate things, and then we re-test everything in a few weeks.

As a parent who walked into this childhood cancer world under the auspices of a brain tumor diagnosis, waiting to re-test is a terrifying prospect because brain tumors often grow incredibly quickly and hours to days can make a huge difference in the end result. But… as Chase’s [very patient] endocrine team has had to remind me many times over the last four years: thyroid cancer is a different cancer with its own unique schedule of growth – in that way, at least, it is a far more gentle cancer.

So we sit for these weeks until the re-test and trust Chase’s weary body and his levels to the One who knows him best.

Moment by moment.

As It Should Be

The dark of the room matched the black of the ultrasound screen as I watched white lines flutter and join, flutter and join, the movement changing every time the tech changed the position of the probe on my boy’s small chest. Slowly, I looked down at his hand, held tightly in mine, processing the questions from the team: “Has he fainted? Have his lips turned blue? Does he complain of pain in his chest?”

Before we started the day, Chase told me he wasn’t worried, but in the moment, he wouldn’t let go of my hand, he refused to eat dinner the night before, and as I woke him from a sound sleep, he wouldn’t stop repeating: “You need to reschedule this appointment”. Fear has so many facets to it, right, dear ones?

The tests were finally completed and the consultation too, and when it was all over, we learned that Chase’s heart was as strong as it could possibly be. In fact, his rhythms neared normal – one of the very few times in Chase’s life that normal has been applied to him.

In the small generic exam room, I sat in the chair across from the cardiologist and accepted her words. I was relieved, but I felt static too… a sort of nothingness. And as I looked at Chase, seated on the edge of the exam table, he wore a deeply tired expression even though he’d just been informed that the doctors were pleased with his stability.

Later, in the car with Chase asleep over his arm rest, I replayed that moment in the room – the total lack of joy at seemingly good news.

Are we burned out on grace? Are we so weary that good things have ceased to feel like a gift? Is this what happens after over a decade in the fight?

Perhaps, and yet, dear ones, I don’t think it’s that simple. You see, yes, Chase’s heart tests were stable. In fact, he will receive a much-needed cardiology break as he will go several months before he needs to be rechecked – which is everything we could hope for! But after that piece of news came the reminder words: The good news we received can’t be ensured for any length of time because they just don’t know what comes next for Chase.

So despite the flutter and join on the ultrasound; despite the blood going where blood goes in the timing needed to reach the whole body… well, Chase’s heart is at risk now and always because, as the team reminded us: Chase himself is high risk.

Stable, but don’t forget: high risk; no future stability guaranteed.

Sitting with those words and their reality and various possibilities feels like watching a beautiful sunny sky to the east even as you feel a dark storm rolling up behind you from the west. You know what I’m talking about, friends? It’s the kind of storm you feel on the skin of your back even as the sun is warm on your face. …and all you can do is wait for it to hit you.

So where do we go from here?

The reality is that we can’t sit with the high risk words at the front of our brains and hearts every day, or we’d never resurface. We would truly and completely burn out. But the heaviness is a very real component of every appointment and I believe it’s because we’re reminded of everything that we wish never happened…everything we wish never existed in our stories. What do I mean by that? Let me share this beautiful quote from author Emily A Jensen, because it’s perfect and she gets it just right:

“Even being at the doctor is a reminder that something isn’t ‘as it should be’ and that can feel like a heavy blanket on our hearts”.

So for a moment, we just let the high risk reality sink in. As Jensen puts it so well, we sit with the ‘heavy blanket on our hearts‘. We let ourselves feel the grief of the ‘isn’t as it should be’, because, dear ones, I truly believe mourning is an integral part of the life process.

We were not created for this brokenness.

And some days, the overall brokenness feels bigger than the good test results. So we weep. And that’s okay – in fact, I believe it’s downright good for the soul. But after the tears, we looked up again, and we remind ourselves that every day is a purposeful gift, and also that nobody has guaranteed stability stamped over their future on this earth. Stability was never promised. And that’s okay because better things await us.

Remember that the end of the story will be good, so if there are tears in your eyes…tears in my eyes… if we feel the weight of the brokenness and wish it wasn’t so… well, then we must not be at the final chapter just yet, dear ones.

Pressing on…

Moment by moment.

Of Orange Shirts, Golf, And Kids’ Stories…

Twelve kids with their stories (both patients and some siblings too – because wow, the stories these siblings could tell)…

One day…

Two golf courses…

And hundreds of generous hearts…

All the numbers… all leading to the kind that take your breath away: like, just over $1.5 MILLION raised for Ann & Robert H. Lurie Children’s Hospital of Chicago.

It was such a heart-filling moment to be part of this event and it was also such a well-placed reminder in our weariness that there is always hope for better days ahead.

–MbM–

twelve children in orange shirts with the golf course in the background

All our love and gratitude to Kevin Butler, the Ace Hardware Foundation, Children’s Miracle Network Hospitals, and all the many amazing souls who made this happen.

Roll With It…

On this Thursday, also known as “Star Wars Day”, Chase was in and out of surgery in a relatively short time as hospital days go, and we were able to bring him home.

We love the surgeon who worked with him today – not only is she an amazing doctor and advocate, but she’s worked with Chase before – sometimes even in very difficult moments. Before Chase went back, I sat with the surgeon and she explained things about the possibility for multiple incisions or cutting into muscle, but in the end, this boy (who does so much the hard way) had a blessed moment of ease: the implant was in one piece, so he only needed one incision and the rest of the area, both inside and out, was left virtually intact. (less stitches are always lovely, right?)

And then they wheeled him back, and he was afraid, but peaceful too. They stopped at the white doors that mark the line between parents and staff and I kissed his fuzzy head and told him I loved him so much. And as he passed through the doors – like he’s done too many times before – I cried.

I cried because the moment of separation – that knowledge he would be facing a cold operating table and a scalpel and I wouldn’t be there to hold him – never gets easier. But I also cried because these last two weeks have felt like the outside of enough and I was just so, so relieved that this was (hopefully) the last appointment for a little while. But regardless of what comes next, like Chase said when post-op didn’t include goldfish crackers: “It’s okay. We’ll just roll with it.”

*Grandpa watches Chase sleep off the anesthesia*

Thank you for rolling with us.

Moment by moment.

The Problem of Young Bones

Every day is a little better. There have been no hallucinations in five days. But sometimes, he still slurs his words and sometimes too, when we speak to him, Chase looks at us like we are speaking a different language – like he doesn’t understand – but only sometimes.

So early, early tomorrow morning, we turn to the next thing: some surgery.

A few years ago, Chase’s bones showed signs of locking into place for good – everything his body has been through led his brain to believe that perhaps he was old enough; tall enough.

So at the time, he went through a surgery to place an implant in his arm – the goal of which was to help control puberty and growth – because, you see, too many children with brain tumors loose their endocrine system regulation in the fight.

Anyway, the implant that has been so helpful to him is now in danger of hurting him. His bones are too young now for his body (you can’t make this stuff up), so the implant that served him so well needs to be removed. … tomorrow morning.

If all goes to plan, this will be Chase’s last day in the hospital for a little while, and how we are ready for a rest!

But also, we would so appreciate prayer for the day because, no matter how small, a surgery is still a surgery… and Chase is still Chase.

Moment by moment.

Let your unfailing love surround us, Lord, for our hope is in you alone
Psalm 33:22 (NLT)

**May is Brain Tumor Awareness Month #GoGrayInMay**