CHASE AWAY CANCER – The life and stories of a cancer ninja

Of Fourteen Years and A Better Country

A handful of weeks ago, as the last July sun rose on the horizon, Chase passed his fourteenth cancer anniversary marker. It’s been fourteen years since Darcy woke us up right before the dawn complaining that Chase was moving in his bed and wouldn’t stop. Fourteen years since the first seizure, the first ambulance, the first terrifying description: “there’s a large mass”, and everything we ever knew changed forever.

We were initially given a less than twenty percent chance of Chase surviving his cancer. Did you know? I remember that his doctors hoped to give us six months because the goal was to get him to his third birthday. They wanted to at least let him turn three… and that was fourteen years ago now.

In those early days, we slowly said goodbye to the life we had and the Chase we had known (though we didn’t realize it at the time)… the one with the hair on his head, with his unscarred body and un-slurred speech. The one with the perfect hearing and eyesight, and plans to grow as tall as his dad. The Chase we thought we’d know and grow looks different now. Everything changed with the cancer.

But that’s not the end of the story…

Recently, we were in the car with our fuzzy-headed boy and as often happens with any time on a car ride, Chase talked about whatever happens to come into his mind.

On this particular occasion, he talked about his friends Wesley and Connor and many others that he has known through the lens of the hospital. And then suddenly, he was talking about his own journey.

During the somewhat rambling course that his words took, he said that cancer has “changed him for the good”.

At this point, I looked over at Bob… What did he say?

It is not an unusual thing for Chase to stumble over or confuse his words, but this felt too big and strange a slip, so I actually stopped him and asked him to clarify. In that moment, I actually told him what I thought he meant to say. “You mean it’s changed you for the bad? The cancer? I think you confused the words, Chase.”

Then he told me that no, he meant what he had said. And then he clarified his statement with these words …

“I think the tumor changed my life for the good. It changed a lot of things like how I prove myself, how I give advice, how I talk to people in the world. I can give people courage and confidence. I wish it didn’t happen. But I won’t say that. Because it makes me feel bad about life. I don’t want to feel bad about it. I pray that my faith stays strong.”

How can my son sit there, broken and weary after being profoundly, forever altered by his disease and say “good”? How is he capable of making the decision not to dwell on this very real damage? …the same damage that overwhelms my own heart in many moments. Just… how?

We, the ones who witness his fight, know it is not good. In fact, cancer feels like the very and fiery opposite of good. And yet Chase said what he said.

I think I could sit with his words forever and not get over them, dear ones. That’s why I opened the note app on my phone even as he was still talking and started typing as quickly as I could! The words seem crazy…! And yet they ring clear and concise – especially when I consider that the last words he decided to speak on the subject were:“I pray my faith stays strong.” [he was actually quoting a piece of a Danny Gokey song he loves]

I believe Chase could ultimately say the word “good” in this context with complete neurological clarity because he wasn’t focused on his pain. His eyes weren’t down, looking at the reality of where his feet were planted on this earth and mess. Rather, he was looking ahead. He was focused on that place that the book of Hebrews calls “a better country” – the final, best, and promised place where we will finally understand how our pain wasn’t wasted. The place where we will come to see the good and know as we are fully known.

To be clear, Chase knows the reality of cancer. And as he said – if he thinks about it he starts to feel bad. I have witnessed his tears and his questioning more times than I can count.

I believe Chase was, with his words, practicing what it looks like to live with hope. His good…his very joy…wasn’t spoken in regards to his outcome but rather, in his own worshipful witness of Spirit-enabled profitability in the chronic wreck of a post-cancer life.

This is the goodness of God in Chase. Fourteen years down the road…

Moment by moment.

“Why did [the people] stay in tents in a place where they owned nothing? Because they desired a better country. They realized that that was not the whole plan. The whole plan was wider and deeper and broader than just the land. So they put up with temporal discomfort, believing that this temporal discomfort is leading to an enteral weight of glory. … We press on with faith and we endure with hope. The hope is taking the future reality of God, the future promises of God and believing them to be so true that you live your life today by them.” Dr. Steve Leston, on Hebrews 11

Of Breathing and Daily Bread

The older sister’s voice is calm, but tense: “I just checked on him. He is breathing, but his skin is still really pale. I took a picture for you.”

I absorb her words as I sit in the stands at a freshmen football game, cheering on the baby of the family while the oldest, best sister watches over Chase in the fifteenth hour of his sleep. He sleeps a lot right now.

This last week, Chase caught a cold.

As it usually goes in large families, everyone caught a cold. But whereas we all took extra vitamins and maybe an extra nap, this very small, very basic virus dealt a throat punch to Chase’s autonomic nervous system. It took him from in school and joking with his teachers to walking only with assistance, not eating, and not even wanting to talk in a matter of 24 hours.

For much of the last five days, Chase has been on a heightened “ER watch”, meaning that Bob and I as parents were instructed that a noted status change would require not a call, but a going. It feels like the real life equivalent of the monopoly jail card…”Go directly…don’t pass…don’t collect…just GO”.

As of this morning, I’m so thankful to report that Chase managed to stay out of the hospital and it’s seeming that he’s turning a corner. His blood pressure is now registering almost human numbers and while he’s still quite weak, he’s getting stronger and starting to joke and smile again.

But I think I’m writing this out for myself as much as for you today, dear ones. The last five days have been intense and there’s no good space in general parenting for the necessary processing of acts like checking to see if your child is still breathing…or talking through that fear with the siblings.

This is one of those pieces of Chase’s story that seems to have a very direct correlation to his brain tumor. Which means he would not struggle like this if he hadn’t had cancer.

Some days – especially the tired days – that thought hits hard and insidious. It sneaks like a whisper in the back of my brain as I stare at the blood pressure machine for the hundredth time or try and help him get comfortable around chest pain and dizziness.

This is one of the pieces that doesn’t wrap nice and neat – that doesn’t have an end in sight. And it’s frustrating.

During this time, I have found myself thinking a lot about the asking for our daily bread (from the Lord’s Prayer). “Give us this day…” …not this week, this month, the lifetime…just this day, and maybe even this moment. There is an immediacy both to the request and expected answer too.

Give me this moment what I need, dear God …and when the next moment comes, faithfully give again.

I think this is the picture of sufficient grace: the circumstance might not change, but we are held and given what we need even within the heartbreak or weariness.

And so we continue…

Moment by moment.

[picture: from Darcy…originally in color to allow me to check Chase’s skin tone from a distance]

Of Papers, Chest Pain and Being Okay: a moment for the new school year

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.

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 Uno, Electrodes, and Precious Trial Moments

This is Connor, dear ones.

A couple weeks ago, Connor, a family friend, found himself scary and sudden in the neuro world one morning.

One moment, there was going to be cereal for breakfast, and the next, he was on the ground, his worried parents at his side. Then came an ambulance; hospital bound. And then came the deep challenge of working through what it meant to re-learn and remember after seizures knocked his body and short term memory sideways day after day.

Connor ended up being transferred to Lurie and Chase and I were actually in the room at one point as Connor bravely fought through a seizure moment. Chase watched openly, and with his usual matter of fact voice, stated only: “If I can do it, Connor, so can you.” A rough and direct courage word, for sure, bless him. He would tell me later that he thought Connor was “very brave just like me”.

During Chase’s EEG monitoring, both boys needed to be in their respective beds, and so they started sending pictures and videos to each other via their moms phones: Chase beating me at Uno, Connor catching a nap, Chase with his head wrapped in electrodes, Connor eating a meal.

And then Chase was discharged and it was pictures of Chase resting or throwing his javelin at home, and Connor getting to meet a therapy dog or being brave during treatments to help heal his body from the root cause of the frequent seizures.

During that time, Chase dictated these words to Connor:

“Dear Connor, I can’t believe it! I’m so excited for you! [that the treatment went well] Sometimes being stuck in the hospital – when I was stuck in the bed like you – is really hard, but you get good opportunities to meet people and be the hands and feet of Jesus. You know God is with you always and you can always think about home. And you have your family around you even if you can’t always see them.”

These words, as you know, are based on his long, often difficult experiences, and they ring true in many ways precisely because we know that he knows what he’s talking about, don’t we?

Chase had his cardiac rehab assessment on Monday. This was hopefully going to be the moment when he would get to “re-graduate” and be done…and instead they said they’ll look at his numbers and get back to us.

And then we went to see Connor again.

Today, I got the call that it’s not time to end cardiac rehab just yet. The official opinion is that Chase could benefit from another month at least. And I put the phone down and cried because I know it will help, but Chase is tired. We are all tired, really.

And then I thought about Chase and Connor and the gift of those connection moments. You see, the reason Chase was in the hospital last week in the first place was to try and get answers about his unresponsive episode in February. We spent two whole months on the test waiting list. Originally scheduled in mid May, every attempt to move the EEG forward fell through despite repeated efforts. And then there was a call out of the blue: “There’s an opening…can you make it?”

Dear ones, Chase’s test time came at the exact moment Connor was in the hospital… and was only a few doors away on the same floor! There was such a precious bond of encouragement that was forged in their unique trials – simply because they got to be together in them. And even tonight, as I write these words and remember the moments together, I am reminded that trial moments are not wasted moments. Another month in cardiac rehab won’t be wasted… even if we have no idea what lies ahead.

In fact, nothing is wasted in the story our good God has for us.

“He is with us always…and we can always think about home.” – Chase to Connor

Moment by moment.

“All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” 2 Corinthians 1:3-4

**at the time of this post, dear, brave Connor has been seizure free for enough days that he was finally able to be discharged and come home. Today’s text thread included the comparison of who would get to take more naps today.