I have come to realize that I don’t post very often in the month of August and it’s because it’s the month that comes with a return to school and all the pieces involved for a child like Chase.
Last year, Chase missed a significant part of his sophomore year. This year, he’s hoping for better and more, but he’s afraid too.
Every day it is a challenge to help him wrap his mind around his symptoms and try to figure out what needs to be reported and monitored, and what can be ignored. [easier said than done, for sure]
And me? I’m filling out all the papers and sending emails and working with his hospital and this most incredible support network just to get Chase in the school building and allow him to be there all day.
This last week, I was at the school almost every day (forms, medicines, low blood pressure intervention, etc)… BUT …so was Chase. [winning!]
The intersection of a medically complicated life and a typical school day is an interesting space to inhabit.
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.
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… THANKYOU.
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 theAnthony 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.
On Tuesday, December 12th, Chase turns 14! Isn’t that a miracle?!
This year, he (again) had a request: his birthday fundraiser be equally divided between Lurie Children’s Hospital and the Anthony Rizzo Family Foundation. But there’s also a little extra, a special 14th birthday nod to his friend Robbie Gould’s new partnership with Cal’s Angels. In honor of Chase, we will also be raising a separate $500 going to Cal’s Angels in order to help grant a wish for another child like Chase.
We can’t think of a more fitting plan! Lurie has gifted Chase life more times than we can count, the Rizzo Foundation has instilled more hope, and Cal’s has brought more joy – Life, Hope, and Joy – all together.
Would you consider donating here? You can give $14 for Chase’s 14 years (or a multiple of 14…or more!).
Every dollar counts, and this year, it feels like it counts double…no, triple! …as the dollars will go to help a child like Chase and a family like ours – often in their most stressful, heartbreaking moments – in the home with Cal’s, in the hospital with Lurie, and around the country with The Rizzo Foundation.
With your help, we can contribute to research, resources, and encouragement for so many children like Chase.
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 – andquickly.
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.
