Of Good and Thankful Things

On Thursday, December 12, 2024… Chase turns 15! He loves to know the exact time of his birth (3:27PM, CST), and he’s been going around and telling everyone that right at the time that the buses leave all the grade schools, he will reach the moment he turns 15. I know this because even the teachers in the high school have mentioned it to me. Oh Chase… 🙂

15 years on this earth… Isn’t that an incredible miracle?!

As always, his birthday request remains that we raise funds to be equally divided between the Anthony Rizzo Family Foundation and Lurie Children’s Hospital (specifically: the Pediatric Brain Tumor Program) . 

We, as his family, can’t think of a more fitting plan. Lurie has gifted Chase life and the Rizzo Foundation has instilled hope – Hope and Life – together.

Would you consider donating here? The link will take you to a GoFundMe page called “15×15” and you can give $15 for Chase’s 15 years or a multiple of 15…or more!

HeyTHANK YOU.

Every dollar counts, and this year, it feels like it counts double as the dollars will go to help a child like Chase and a family like ours – often in their most stressful, heartbreaking moments – both in the hospital with the Lurie Pediatric Brain Tumor Program and around the country with the Anthony Rizzo Family Foundation.

As we celebrate the gift of Chase’s incredible 15 years, with your help, we can contribute to research, resources, and encouragement for so many children like Chase.

Thank you for doing this with us… Moment by moment.

Hey, again, just a quick note…. Maybe this isn’t your year to give… I get it. It’s been a year, but there is another way you can help. The link, pictures, and updates will be posted on Chase Away Cancer on Facebook and Instagram and I’d so appreciate if you could share the joy and help us get the word out. Thank you, dear ones.

*images courtesy of Margaret Henry*

THANK YOU

See us running and hugging and freaking out a little? …crazy joy smiles on our faces?

Today, that’s what we’re doing because 1) our miracle boy turned 12 years old yesterday, and 2) because you put together the MOST AMAZING action in the last two days.

In less than 48 hours, the Chase Away Cancer community and friends gathered OVER $13,000 for Lurie Children’s Hospital and the Anthony Rizzo Family Foundation in honor of Chase’s 12 years!

You guys!

YOU DID IT!!!!!

I wish you could have heard the gasp Chase let out when I told him the news.

Dear ones… this was a VERY GOOD THING that happened this weekend.

From the bottom of our hearts –

THANK YOU

Moment by moment

[all photos: Margaret Henry Photography]

Lessons From The Second First Anniversary

You think I would know by now that another shoe drops with each piece of news… I have debated writing this all down because it feels like I’m being a drama mama, and yet, it feels dramatic because everything is traumatic when there’s been a terminal fight. So, it’s true that Chase’s brain and spine are in the clear for now, but it was next-hospital-day news that revealed there is something growing in Chase’s thyroid. We have been told that it’s probably not a big deal, and I want to believe that with my whole heart, even though I know IT’S CHASE. All the necessary teams are getting onboard and there will be more tests and more days spent in the hospital. So it’s probably nothing. But it could be something. But we pray it’s not. Welcome to the roller coaster. The only thing we can do is buckle up and cling even more and ever more to hope in the moment by moment. ❤️

Chase Away Cancer Facebook page, January 11, 2019

It’s cancer. And the total mind-twisting news is that it’s actually a good cancer. (Yes, the term “good cancer” exists.) But it’s still another cancer and it’s somehow inconceivable to me that in nine short years, this sweet boy is facing a second battle. In this wind-knocked-out-of-us moment, there is so much to weigh us down and break us, but there is so much to be thankful for – so much blessing too. So, we choose thankfulness…and throw ourselves into the cancerous moment by moment again.

Chase Away Cancer Facebook page, January 29, 2019

It feels like I wrote these words seconds ago. I remember the pit in my stomach and the way it felt hard to breath. But it was a year ago now, and as I reflect on this crazy year of a second cancer, as we approach the second first anniversary of a diagnosis, there are three things that stay close to my heart, and so in honor of the struggle, I share them with you now. I hope you see yourself, see encouragement, and see hope in these words, for we are all in a fight of one kind or another:

  • At no point does pain reach a saturation point. In our experiences this last year, there has never been a moment when we thought, nor have we met anyone else who thought or said: “Oh, I have already experienced several years of pain and suffering, so it does not phase me as it once did. It is easier now.” Every pain is new like water on a parched ground, soaking deep and fast, and sometimes things hurt worse simply for the misplaced conviction that they should not hurt at all.
  • There is no modifier in a cancer journey. It isn’t “just” thyroid cancer, “just” stage one. There isn’t an “easy” cancer. Some are more complicated than others, some come with a higher mortality rate than others, but there is no easy cancer. Each comes with its complications, both physical and emotional. And in a disease where there is no justice, there can be no “just”. This is the broken world manifest in our broken bodies.
  • Make every moment count. I sign off every piece with the phrase ‘moment by moment’ and it stems from the edge-of-the-knife times when everything changes and the ground shifts beneath you. If I could take one thing from those first seconds of knowing, when the heart beats hard and everything in you falls and screams, it would be this: make the time count. Sometimes, I forget and am lulled, yet, how I long to keep it close even when my heart beats slow and all is well. Only the necessary. Only as needed. Always with grace. …moment by moment.

Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

Lamentations 3:22-23
Friday, February 22, 2019 ~ one day after surgery

**On this past Tuesday evening, January 14th, Chase had another seizure, his first in six months. It was under five minutes long and he came out of it well and quickly, but he will be facing additional tests and labs, including another overnight stay in the hospital – all in the next month.**

Of Food, Fire, And Being Fine

“What if Chase ever did something truly harmful?” 

 Sometimes the question keeps my mother heart and brain up at night. Raising a child with brain damage and low executive function (the part of his brain that reminds him if things are a good idea or not) can be exhausting, but it’s the element of danger, the knife’s edge – both a literal and metaphorical idea most of the time – that keeps my eyes open in the dark and makes my heart pound faster. 

What would I do if he ever did?

He wouldn’t, would he?

I didn’t know how soon I would be asked to put those ambiguous thoughts to the test of reality…

“FIRE…!!! FIRE-FIRE-FIRE-FIRE…!!”

It was early on a spring-cold Sunday morning and I thought I had heard all of Chase’s screams, but this one was new and horrible – the panic at a level I’ve never experienced before. I could feel his fear in my own blood. Hitting the lower level stairs at a dead run, I turned the split corner by the front door landing and looked up into my kitchen, the glow of flames currently contained in the microwave clearly reflecting off the dingy white ceiling. 

Why hadn’t we ever re-painted the ceiling? It’s so strange what random thoughts race through your mind in a moment of threat and adrenaline.

The kitchen was on fire. How long did I have before it spread and cut off the boys escape from down the hall? Did Aidan have his headphone on – could he hear Chase scream? Thank God Bob and Darcy were already gone.

My view of the unfolding glow was only a split second as Chase and both of his brothers came pounding down the stairs, free of the hallway in their pajamas and bare feet, obeying the command to take nothing but their bodies and exit the house immediately. 

Heart racing so hard I could hear the thump of it against my ear drums, I pressed those three precious digits into the screen of my phone and thumb hovering over the final push to put the call through, I stood in front of my house, the door thrown wide open and wondered if today was the day Chase finally burned the house down. Perhaps it was always only a matter of time…

Thumb paralyzed on the phone, I realized that there were no longer glowing ripples of flame reflections visible through the door. I expected to watch them climbing a wall by now, not go dark.

Did I dare look before I placed the call? To go back into a structure potentially on fire was the height of stupidity...

Did I misunderstand when Chase cried for us to run? But I had seen it happening with my own eyes…hadn’t I?

I left the boys crying in fear on the front walk and gingerly entered the house again. 

There had been a small fire. 

And it was totally gone. 

Slowly, the reality began to unfold with the story. Chase struggles to read, so many times, he simply does not read – relying instead on pure instinct and determination. So he didn’t see the small, brightly-colored print at the bottom of a fast food bag warning about the microwave and his first clue to the awful mistake was watching the bag with his leftover chicken sandwich burst into flames in front of his eyes. 

There is probably a logical, scientific explanation for why the bag stopped burning, for why the dish burned, but did not catch fire, for why the inside of the microwave smelled heavy and densely of acrid smoke, yet there was not so much as a vapor or scorched wall present when I finally got the courage to pop open the door. The walls of the machine were cool to the touch.

There is probably a logical, scientific explanation, but to me, this will always be both a miracle and a message. 

Everything could have burned, but it didn’t. While Chase made crazy decisions and took uninhibited risks, the worst was withheld and we were kept wildly, joyfully safe.

And as I stared at the cinders of the paper on my scorched dining plate, standing in the middle of the kitchen I still had, listening to my children stepping back into the house in relief and joy, it felt as if God himself whispered quiet and close: 

“See? I’m not taking it all away, but I’ll see you through it just fine.”

Moment by moment. 

“When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.
For I am the Lord your God,
    the Holy One of Israel, your Savior.”

Isaiah 43:2-3, ESV

Chase And The Super Bowl

They said his often-exclaimed, loud and exuberant “Wow!” brought smiles to many a stranger’s face…

Dear ones, you will quickly learn that video editing is not my first or best skill, and if you’re on social media, you’ve probably already seen a few of these pictures, but grab a minute (or three), a chair, and click the play button to join Chase on his Atlanta Super Bowl journey.

All the love in the world to Robbie and Lauren Gould​ and the San Francisco 49ers​ for making these memories possible (and Topgolf​ and Delta Air Lines​ for helping) – and to our Ann & Robert H. Lurie Children’s Hospital of Chicago​ for making sure Chase was alive and well to enjoy it. ❤️

It was a good, good moment.

…by moment.