Family – Page 26 – CHASE AWAY CANCER

The “NEDiversary”

This date marks another very special, stone-of-remembrance day.

One year ago today, we sat in a conference room with Chase’s doctors, staring at a large screen on the wall as it projected images of his brain from July 2012, October 2012, and finally, January 17, 2013. The initial summer horror, the fall realization that treatment wasn’t making progress, and than this winter wonder… On an MRI, cancer cells look like areas of white to our untrained eyes. White balls, white spots, areas of white shading. Before us now, we viewed pictures of a small child’s brain…with virtually no white. In shock, we absorbed the words… “There appears to be no evidence of disease.”

I remember seeing their wary smiles and hearing the phrases of cautious optimism and not knowing how to respond. They were telling us that Chase was okay without telling us that Chase was okay. The tenuous relationship between pain and beauty, good and bad is everywhere. The cancer appeared to be gone, but nobody trusted the take-no-prisoners classification of this “AT/RT”. That struggle is reflected in the words I wrote a year ago today:

I’m wrestling as I write and erase, and write and erase again. I don’t think I’ve ever written such exciting and positive news in such a tentative way.
This day is funny and strange, because happy news doesn’t erase Chase’s pain and suffering, even as it potentially extends his life. There will still be fevers and transfusions and frequent hospital stays.
Many things ahead will be subject to constant change, but there are some things that will be as they have always been: God’s incredible grace to us, our complete need for Him to rescue us, and the never-ending necessity of living in a moment-by-moment existence.
As Bob and I prayerfully thanked God over Chase’s hospital bed in that first breath of knowledge, we were released from the cancer burden to exult. And now, we turn towards what is yet to come, acknowledging that it is all–the good and the difficult–a precious gift.

Looking back a year later, it has been every bit of suffering and constant change that we thought it would be – plus, much more that we’d never dreamed of, but it’s also been a precious gift and God’s grace has abounded – often much more than we’d ever dreamed.

I closed those first tenuous thoughts with these words that ring as true as ever and are an often needed reminder as we prepare for another MRI, Chase’s first three-months-with-no-treatment MRI next month:

Our soul waits for the Lord; he is our help and our shield. For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O Lord, be upon us, even as we hope in you. Psalm 33:20-22

Today, we celebrate one year with “No Evidence of Disease” – the NEDiversary, if you will… and we continue as we always have and always will…

Moment by moment.

[Thank you for continuing with us. Your support means more than you know.]

Chase with his awesome attending neuro-oncologist in January 2013 — Chase with his wonderful attending neuro-oncologist in January 2013

Of Bears Hats And Times With Dad

Today is a big day for Chase! He has routine appointments at the hospital (not big), and he and Daddy are going by themselves!! (REALLY big!)
Bob is looking forward to some bonding time with Chase and I (laid up with a concussion at home – a story for another time) am trying not to call them every few minutes. 🙂

Two things to note…
1) Chase is a Chicago Bears fan and wanted me to point out that he’s wearing his Bears hat.
2) Look at Chase’s face! I know this picture isn’t the best, but he’s visibly filling out! I love it!

Moment by moment.

Do You Hear What I Hear?

I’ve written about Chase’s lack of hearing before.

The tiny room…

The sounds I can hear that he doesn’t…

The frustration in our home as he calls and calls desperately across the house, never once hearing us answer…

Since his doctors surgically cleaned out his ears, the intense frustration has seemed to improve a little. Now, he seems to be able to hear a voice from across the room, but perhaps that’s just wishful thinking on our parts. After all, we know the collateral damage we signed on for when we started this journey.

Stimulating his hearing through his skull - fearful and wonderful — Stimulating his hearing through his skull – fearful and wonderful

And yet…

Today, as we wrapped up the audiology exam, she sat down and smiled: “I don’t usually get to tell people this, as it often goes in the other direction, but…his hearing has actually improved!” The procedure performed in November (when he was under anesthesia for his MRI) was successful and his hearing is within normal ranges in several areas. His high frequency hearing is still classified as “poor“, but even that has improved from the “unresponsive” conclusion on his last test.

Even as we both celebrate these results and wonder about the results in six months time, I am reminded again of these words…

Chase doesn’t need perfect hearing to hear the voice of God.

Thankful.

Moment by moment.

He feared the giant headphones and we told him that he looked like an airplane pilot :) — He feared the giant headphones and we told him that he looked like an airplane pilot 🙂

Clear

Clear. Clear! The MRI was clear!!

Brain…clear. Spine…clear. And the areas of fluid they’ve been watching? …smaller!

Chase’s doctor said that the images were perfect and exactly what they’d hoped for.

It’s official. Chase has finished his chemo therapy with no signs of cancer.

How I wish his scans would stay like this forever! They may, and they may not… but either way, they are clear right now and in that we have so much joy.

Last night, I wrote about a second day of testing. This has now been moved to next week due to some scheduling issues and the post-procedure counsel of the ENT.

We’d so appreciate continued prayer for Chase, especially tonight as it’s been a long day and the anesthesia was rough. He’s having significant ear pain – a common side effect of the procedure – which has him screaming at anything pitched over a whisper in the house right now. We have been told that it will pass in the next 24 hours and we pray that’s true.

Thank you for coming on this amazing journey with us. God is good.

Moment by moment.

I couldn't resist adding this picture as well. It takes a pretty amazing dad to escort his child into the OR *and* rock the outfit while doing it. :) — I couldn’t resist adding this picture as well. It takes a pretty amazing dad to escort his child into the OR *and* rock the outfit while doing it. 🙂

Of Tests, Hot Chocolate, and Blessings

My apologies for the recent lack of blog updates. I will get to the last few weeks another time. For now I’d like to update on this week alone.

In the morning, Chase begins the first of two full days of tests and appointments with his doctors for post-chemo evaluation. We’d greatly appreciate prayer, especially in regards to the full brain and spine MRI and the potential ear surgery which will collectively have him under anesthesia for 2-3 hours tomorrow afternoon.

We consider ourselves incredibly blessed to have made it to this point… to even be discussing a “post chemo” life… what a gift!

Right now, the snow is falling outside and because many aspects of Chase’s traumatized brain are still breathtakingly sharp, he reminded me that I promised -last year- hot chocolate and “The Polar Express” when the first snow fell. So the siblings lie snuggled on couches in the dark, gleefully starting the holiday season too early. But really? Can one ever start too early? It’s the time that we set aside to be thankful…for Jesus, for love, for life. There is no time limit on those things. And while a hot drink and Christmas movie hardly seem focused on such great themes, the very opening sounds and smells threw me back in time a year and the radiation burns and the cancerous spinal taps and the crushing knowledge that the season of 2012 might be the last.

There will never not be apprehension about all the tests and what we’ll hear on days like tomorrow, but right now, in this moment, I’m reminded that we’re incredibly blessed.

Moment by moment.

In the dark, a bald head snuggles in front of "The Polar Express" — In the dark, a bald head snuggles in front of “The Polar Express”