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…
