moment by moment – CHASE AWAY CANCER

Of Hot Chocolate, Thankfulness, and Impossible Things

It was quiet in the sunlit lobby.

Quiet enough to possibly nod off after the long night of sleep testing.

Instead, I reach for the large black coffee close to hand, trying not to think about the painful cannula stuck in Chase’s nose and taped to his face all night. Too many pieces surrounded him to really sleep, I think.

We made it through the overnight. So, four more appointments and eleven more hours and then we could finally go home.

Sometimes when the hospital isn’t around the corner from your house, it’s easier to “stack” appointments and just stay downtown. Easier… ha, I think as I sip the coffee.

There’s still almost an hour until cardiac rehab. I remember the tech rubbing at the electrodes on Chase’s head last night, trying to get them lined up just right. I hadn’t told him about the red marks and even a small open sore on the back of his head this morning as I’d cleaned electrode goo out of his fuzzy hair. If he knew anything had left a mark, it would bother him even more and we just needed to get through the next thing. Today came with a cardio-pulmonary assessment and evaluation of his stamina too.

Idly, I wondered what the sleep study would find… if there might be embedded bed answers for the times sixteen hours creep by while he sleeps like the dead.

Chase reached for his phone and pulled up the Bible verse for the day, sending it to me and several other contacts in his phone – something he loves to do often. My own phone vibrated on the table with his text:

“But Jesus looked at them and said, ‘With man this is impossible, but with God all things are possible. Matthew 19:26”

Of all the days and all the verses…

I remember this verse claimed for the brain tumor baby down the hall from Chase’s treatment room when we started this journey; the baby who wasn’t supposed to live (and is actually going to start high school in the fall). And then I think of the friend in Israel on the other side of the world holding this verse close right now as she waits to see if treatment worked for her son.

Brain cancer is everywhere.

I sip my coffee with a heavy heart, thinking about all the appointments still ahead and the stupid and frustrating necessity stemming from Chase’s own brain cancer experience. It’s heavy. I feel heavy with it.

“Mom, today, I’m thankful for Dad,” he says with a smirky smile.

He says it to be silly since I’m the one who did the sleepless night with him. But he’s not wrong. His dad is not only a lovely soul, but his thankfulness hits like a balm and I remember the words of an old friend, the only greeting he ever gave. No hello, just “what are you thankful for today?” It was a greeting, but also a challenge.

Can I be thankful in the heaviness? And I realized I was actually thankful that the sleep study room had a Murphy bed instead of a chair for me. The night could have been so much more awake and horrible. Also? The sun was shining. That was kind of nice.

“Can we visit Wesley?” Chase broke into my thoughts.

After cardiac rehab, before we met the rheumatology team, we walked over to the inpatient rehab facility to see Wesley and while we watched, he nodded his head on his own – perfect and controlled. The massive spinal stroke that tried to destroy his body shouldn’t allow for that movement, but he did it anyway. I felt so thankful again and Chase watched quietly before making a comment about the Tennessee Titans flag hanging in Wesley’s window. Even spinal stroke victories doesn’t exempt a person from Chase’s football thoughts.

By the rheumatology meeting, Chase was horizontal, talking to the nurses and doctors from a prone position, wrapped in his fuzzy Bears blanket against the chill of the exam room.

When they examine all systems head-to-toe, there are a lot of questions. Most of the time, he’d turn to me and say “What are they asking?” as if I was his interpreter for a foreign language. And maybe I was, bless his exhausted brain.

“Did you know Michael Jordan owns a Nascar racing team?” Chase asked them. All the talk about his symptoms were boring in the face of his favorite number twenty car coming in second this past weekend downstate. He loves cars and going fast and wishes he could learn to drive a car some day.

The rheumatology team (who did not know about Michael Jordan and his race cars) was stumped by Chase, but wanted lots of labs to check. Labs and needles are his official last straw and so I call Bob in-between his meetings at work: “Can you call our son? He’s closed himself in the men’s bathroom and I really don’t want to have to go in after him.”

He’s done. Officially.

And who could blame him?

But it’s awkward because he can’t be done yet.

I want to weep for him.

Seven missed calls and he finally comes out.

“You owe me.” He mouths the words as the needle glides in smoothly on the first stick to the back of his hand. Usually his veins love to roll and collapse, having him bruised and his phlebotomists frustrated.

A first stick is a small but precious mercy in the long day.

He wants a hot chocolate… but not until after the last appointment of the day like a celebration of survival. I can do that for him.

We get in the car. The last appointment is at an outpatient facility about an hour away. It’s quiet for a moment and I wonder if he’s still overwhelmed and upset, but then from the back seat, the words come: “Mom, I was stronger than I thought I was.”

“He’s one of the only children I’ve treated who physically presents as a different child every time I treat him.” The physical therapist says as she stretches tight muscles in his legs a couple hours later. She goes on to explain that some days he’s strong and limber, and other days, he’s weak and too tight – like today. I laugh at her words and she looked like maybe I didn’t take her seriously, but I was laughing in relief. I felt weirdly seen by her observation. Chase is a rollercoaster and his body is so different from day to day. It’s always nice when someone else sees it too.

And then it’s time for hot chocolate and home and I think back to his words in the parking garage: “I was stronger than I thought I was.” And I think about the truth embedded there: “In the Spirit is the enabling,” said Elisabeth Elliot. I think God himself sits in the space between “I can’t do this” and “I did just do this” and it’s precious and personal.

Now, almost forty-eight hours later, the labs are starting to populate the online chart. They’re all over the place and I don’t know what they mean yet. Several of them are flagged as being outside normal limits. Who here is not surprised Chase sits outside the normal?

Maybe we’ll get some answers.

Maybe there will be more tests.

And maybe these hard things aren’t a helpful diagnosis with clear and clean steps in waiting but simply the real, true results of horribly hard brain cancer treatments at a too young age.

All of this has yet to be determined.

But Chase was stronger than he thought he was on a hard day.

Wesley nodded his head.

The girl we met in the elevator had a good brain tumor scan.

The hot chocolate was delicious.

And with God, all things are possible – even exhausted, broken-hearted thanks.

Sitting in the wait…

Moment by moment.

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!

Hey… THANK 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*

Trusting The Process

“What do you want to be when you grow up?“

The interview question came quick and benign, probably one of the most common questions to ask a child, and yet Chase, propped on a stool in front of cameras and lights, stared at Robbie with a blank look on his face.

The principal stood in his blue suit in the center of the gym with all its sounds and smells, welcoming the room and I watched him over the top of the fuzzy head sitting next to me. High school.

There was a table set up and stocked high in merchandise branded with the school logo and colors and Chase reached for a shirt that said “Class of 2028” – “Can I get this one, mom? I’ll be alive in 2028.”

In the last several days, there have been an unusual number of moments to look forward. This facing high school and growing up… it is such a gift. Too many of Chase’s friends did not have this privilege. But it is a strange thing to walk hand-in-hand with the kind of diagnoses Chase has and to think forward – beyond simply the next moment.

There is a strange (though by no means bad) tension in this space. All we have is today, and yet we walk about with plans for the next year, the next decade… and further still. It’s a blessing and burden in equal measure because time is a gift, but we are not promised more of it.

I walked through the halls of the high school last night, seeing decades of trophies and black and white pictures, all standing witness to a length of time. And I heard Robbie’s question again:

“What do you want to be when you grow up?”

And then I heard the oncologist’s voice in my head… that first meeting on a hot, August day:

“Let’s just see if we can get him to age three.”

What a place to be…

Trusting the process…. Moment by moment.

[picture: Chase is pictured here with a beloved music teacher who – though he does not want to sing in school – he is trying to convince to teach other subjects so that he can be in her class. One of her most used phrases is to “trust the process” and I’m co-opting it here as we look forward with fear and wonder in equal measure]

Note: Dear ones, I needed to write through the strange tension of this place we find ourselves, but in all seriousness, I’d greatly appreciate prayers for Chase. This is a big step. These are the years when children truly lean into impending adulthood and we, none of us, know exactly how much of that adulthood Chase is capable of. I suppose what I’m trying to gently say is that the physical and neurological differences between him and his peers will most likely go from noticeable to insurmountable in many ways. I know it will be good. But it will also be hard. MbM.]

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.

Of Boys, Bugs, And The Week of a Hundred Days

Dear Ones,

In truth, I’m still trying to find the words to put this last week together in my own heart and mind, so this may feel disjointed, but hey, you’re on this adventure with us, right? (and we are so thankful for you)

As I last wrote, Chase had his 33rd MRI on Monday morning and we were scheduled to talk to his teams on Wednesday morning to discuss results… that’s when things really got interesting.

My alarm went off before the sun on Wednesday morning, the house was quiet, and I wasn’t looking forward to trying to wake an almost assuredly crabby Chase. So you can imagine my surprise when I opened the bedroom door to find a fully dressed Chase with his backpack over one shoulder. “We’ve got to go, Mom.” He was ready to go to the hospital because he hadn’t slept well at all. In fact, he went on to tell me that he hadn’t slept since around 1:30AM when he got up to get dressed, pack his bag for the hospital, and even take his morning medicines. That’s a lot of Chase to take in before coffee.

And then, before I could get to the coffee maker, he proceeded to vent. He was very upset because I’d let all the bugs in the house – the reason he couldn’t sleep. He grabbed my arm as I reached for the faucet on the kitchen sink lest the bug on the window ledge bite me. Dear ones, there was no bug on the window ledge. There were no bugs in the house at all.

Within thirty seconds, it was apparent that Chase was in the grip of some kind of simple, but profound hallucination that there were bugs surrounding him.

Within thirty minutes, it was apparent that his speech was being affected as he slurred his sentences out of order, the worst part of which was that he knew the words weren’t coming out quite right, leaving him frustrated and growling, all while he swiped at bugs that only he could see.

Within an hour, it was apparent that his short term memory was involved and even now, he has little to no memory of those early hours of Wednesday.

At this point, I had no idea if he was having some kind of seizure, stroke, or drug interaction. My only concern was keeping him safe and at peace. [note: Chase has just recently had his vision checked, so we could confirm early on that what he was seeing wasn’t anything in his actual eyes]

While the most acute symptoms of the hallucination were gone within those first few hours as we met with doctors and made calls and plans, Chase has continued to be tired and dizzy with somewhat unclear speech and occasional bugs in his vision, so Wednesday’s routine appointments grew longer and starting including more tests. Because he was stable, we were able to bring him home, but were cautioned to take him directly to our emergency room if anything changed.

Since those initial hours, he seems to get better every hour and every day, but his symptoms just didn’t go away and because of this, the last seventy-hours have been full of communications and tests, including finally putting Chase back into the MRI machine (number 34) early on Friday morning to rule out a sudden brain bleed.

We are so thankful to report that there is no bleed and absolutely zero changes from the Monday scan to Friday’s check. But we are especially thankful for that extra vigilance as Chase will be back under anesthesia later this week for a minor surgery.

Over the course of the week, all the teams have done such an amazing job, checking the levels of his various medications in his system, checking his chemistries and thyroid levels, his common blood counts, and even talking to the anesthesia team to see if anything unusual or different was used in last Monday’s procedure that might have caused what we’ve seen unfold this week.

And everything … everything checked out.

It is a relief to know what isn’t happening, and it’s a relief that he continues to improve every day. There is also the chance that it all comes down to that morning dose of medicine he took in the middle of Tuesday night (ie: so few hours after his evening dose) but Dear Ones, I genuinely believe that we might never know exactly what happened or why. This might just be one of the strange and difficult, scary, but not serious, aspects of long term cancer survival. And that realization is heartbreaking even as I shake my head and give a rueful smile around the words “Well, it’s Chase…”

That boy. He likes to keep it interesting.

Perhaps we will know more tomorrow as he goes back to the hospital for a routine meeting with his oncology team. And perhaps we will know more farther along the way. But whatever and however we know or never find out, we will choose hope and press on. And I’m really glad that last week is over now.

Moment by moment.

[On Monday, April 24th, a day that feels one hundred days ago, Chase had a full brain and spine MRI and the results are in: the benign tumors (cavernomas, cavernous malformations) that sit in his brain grew larger, but are still not large enough to require surgical intervention – and it’s worth noting that further testing this long week showed these tumors (despite their growth) were not part of Chase’s difficulties. Small mercies. We are discouraged by the news of growth, but thankful for the stability too. No cancer was discovered anywhere in his brain or spine and the growth in his kidney remains stable.]