patience – CHASE AWAY CANCER

Keeping It Interesting

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 – and quickly.

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.

Moment by moment.

The Horizon

Survivor: /noun/ a person remaining alive after an event in which others have died

Yes and amen. It’s true. Chase is and has always been a survivor in one capacity or another, and now it’s official: research data and his medical teams officially call him a survivor too. But this is not the end of a story. It’s more like another stop on a long and winding journey – the very word Chase’s Dr. Lulla uses to describe what’s still ahead of us.

I used to say that the treatments might kill him, but the cancer surely would and I haven’t used that sentence in a long time. However, at this point, there is a bit of a sinking realization that those words still hold true. Here’s why and here’s where Chase is today – as shown through a list of all the lab-coated friends he has and the standard appointments he will keep all year, every year. THIS is survival*:

He has an eye team to monitor the radiation-induced cataracts, vision loss, and overall sight deterioration.
He has a social worker, neuropsychologist and behavior specialty team to help deal with brain damage-induced emotional issues.
He just garnered a urologist to monitor his development in conjunction with his endocrine system.
He has a yearly ECHO to monitor the chambers and strength of his heart.
He has quarterly hearing tests to monitor deterioration of high and low frequencies both.
He has an otolaryngologist (hearing/ENT) to monitor his ears and the losses therein.
He has a neurology team to monitor potential seizure activity and medication doses as well as emergency plans for his school staff, bus drivers, etc.
He has a neurosurgery team who continue to monitor his progress post-resection and advise on when to biopsy or remove the current growths.
He has an endocrine team monitoring his body and how it no longer wants to grow on it’s own (there is a lot coming up with this team, so stay tuned).
And despite the move to STAR clinic, he will still have a fully loaded neuro-oncology team who specialize in quality of life, recurrence, and secondary concerns.
He is followed and helped in school by extra aids, speech, occupational, and even physical therapists.
And then there are always the labs monitoring everything from his growth hormone abilities to his white blood cell counts.
Not to mention the near every doctor examinations of skin breakdown, scar damage, teeth, eyes, belly, neurological reflexes, and speech patterns.
Chase gets his yearly ECHO with his tech friend, Anthony

This being written and said…don’t let the laundry list get you down! Chase is a survivor and a thriver and some of the greatest minds and hearts of the human race and been forged in unrelentingly unique and pain-filled circumstances. And in fact, he’s one of the few among his cancer friends who doesn’t already have hearing aids, doesn’t need a walking aid or splinting assistance, and doesn’t require specialized therapies necessitating nearly weekly hospital appointments. Compared to many of his cancer friends, this is the shortest list and the easiest end of the proverbial stick.

Why publicize the laundry of survival? I guess the heart of this is to entreat you to hug a survivor – many of whom continue in a purgatory of treatments and treatment decisions. It’s to urge you to support research. It’s to turn words into the awareness that for many, the complicated cancer journey never really ends until the life ends. (And then starts a totally different, complicated journey)

Deep in my heart, this list is why I hate the MRI wait. It’s not so much the wait for the news of one scan (though, I do wait with baited breath all the same), it’s the wait for The Day (talked about in the book of Revelation) that gets to me. Even when the scan results are stable, Chase’s body is still broken. I’ve asked myself a million and one times why I still chafe when stability is exactly what we hope for, and I think this is why: our souls were not made for this brokenness. Even when it’s the best human outcome in all the crazy-awful, our souls cry out for the end of the hard journey; the days with no pain and no tears, the days where it will no longer take a village…scratch that…a giant urban city to care for my Chase boy.

But it isn’t that time yet. So we gather the pieces of our brokenness around us on the journey, clutch our list of specialty teams like the good friends and badges of honor that they are, pray for wisdom to pursue God’s glory in Chase’s quality of life, and cling to the hope that there is great beauty in this atypical life. For this is truly how we survive.

Moment by moment.

*Bob and I have been aware of every single one of these damages and side effects from the very beginning of this journey as we prayerfully made decisions and made our peace. There is no blame in these words or desire to shift our responsibility – just plain truth: the current conditions of pediatric brain cancer care are such that it is a life-long diagnosis whether the cancer recurs or not. The implication of ‘survival’ is that the patient lives three to five years from the date of discovery.

Chase with nurse Jessica in recovery (complete with red popsicle stains)

Too Many Shirts

He scrunched up his nose, the stronger side of his face muscles causing lips to curl angrily on one side. “Bof of them!” This did not bode well.

Some days, Chase is an old soul with wisdom that brings me to tears. Other days, he has the logic and reasoning of a three-year-old, trapped in a body the size of a four-year-old, with the most of the physical abilities of a six-year-old. This means that discussions of any kind are often like trying to hit a moving target. At any given moment, he might need a pat on the head, a “quiet time”, or a higher-level discourse.

On Sunday morning, I laid out his clothes for him and went to iron Bob a shirt. Moments later, I returned to find Chase standing in the middle of the living room, his pants bustled and messed across the back where he’d failed to pull them up properly, and on his torso, he wore an undershirt, the shirt I’d laid out for him, another equally heavy long-sleeved shirt, and as I encountered him, he was attempting to frustratedly stuff his bulky arms into a navy zippered sweatshirt.

His forehead was already beginning to glisten under the furnace of clothing he’d heaped on his body and he was so mad at not being able to get his arm in the sweatshirt that I could tell he was seconds from pitching it across the room with a scream. And now, here I was gearing up to come at him with the sad truth that he couldn’t wear all the shirts in his drawer.

I hate when I know I’m right and for his own good, I need to intervene. Before I even start, nearly every time, there is the pricking sensation that it’s going to be an A++, super guaranteed, completely pitched, blood and guts battle. And on a Sunday morning too . . . because nothing says “getting ready for church” like a family fight.

Kneeling down, I started in, “Chase, honey, what happened? Why do you have all those shirts on?”

Sometimes it’s easier if I don’t assume and let him tell me in his own words, but this part takes time. And how I hate to take time.

He looked up at me simply. “Because I like them all.”

Fair enough. “Well then, why don’t you save one for school tomorrow? You may not wear both this morning. So, which is best for church? The gray one with the green sleeves, or the brown one?”

His voice grew insistent as he sensed my purpose. He would have to sacrifice at least one shirt. “Bof of them.”

“I’m sorry, Chase. That wasn’t a choice. You can wear one or the other, but not both.”

“Bof! Of! Them!” His voice raised to a scream and he played his trump card (which is only ever true about 50% of the time). “Daddy says bof of them!”

Bob’s voice came from the kitchen. “Chase, that isn’t true.”

“Bof of them! Bof of them! BOF OF THEM!!” His voice was a scream, his face red as his lips curled oddly around the “f” he substituted for “th”.

In moments like these, I want to get down on his level, and down in his face and say the four words that are always on the edge of my mind: “Because I’m the mom.” How I want to force obedience out of him as if it’s waiting to pop through just below the stubborn surface.

But at its core, the argument isn’t ultimately about his shirt, though he would have to remove at least two. At it’s heart, the argument is about all of us. Damage or not, our need to be right – to get our own way. As I looked at the “tiny” bald boy stomping his foot in anger, I found that I secretly wished him to respond better than I would have in the much the same scenario.

So often God confronts me much as I stood before Chase: Ellie , will you follow what I’ve laid out for you? I see the harm in this scenario that you do not. You can’t love me and these other things too . . . you must choose one or the other. There is sacrifice, yes, but my way is greater than you can wrap your mind around right now.

[mental angry foot stomp] No God, I want both of them! All of them! Why can’t I have everything? If you really loved me, you’d let me have what I think I want.

In the end, Chase only wore one shirt to church, the argument was diffused, and we all survived, but sometimes, in the myriad of daily battles, I find these rare moments of backing away to see my own heart in Chase’s stubborn stance. Many times, so many more than I’d like to consider, I fail miserably, but in those brief flashes of heart, I grasp just a hint of God’s loving patience with me…

…moment by moment.

For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. Jeremiah 29:11

Scars and Justice

He walked into the room and sighed loud and long, his little way of reminding me that he was here and waiting to be noticed.

Turning from making the bed, I acknowledged him.

“Hey, Chasey-bear, what’s up?”

With hands at his sides and head lowered, he spoke the words, “Today on the bus.”

I waited for a second and when nothing followed, I bent into his pattern, pieces of a sentence stated, pieces of a sentence repeated. This is his way. “Today on the bus?”

“Yes. Ian and Aden.”

“Ian and Aden?”

They said I was short and they made fun of me for being so tiny.”

I stopped still.

How do you react when you want to be justice for your children and it’s already too late?

The words were already said and heard. “Oh sweet boy . . . what did you do? What did you say?

He hung his head, but his voice was steady. “I did not yell and I did not scream.”

“Not even a bit?” I tried to see his face.

“Nope. No screaming.” He put a hand to his chest. “But my heart.”

“Your heart?”

His dropped again. The single word burning as he spoke: “Hurts.”

Some days the truth is not spoken lovingly, but hurled like a weapon and it stings.

How do you prepare a child to stand strong when all that makes him beautiful stands out differently from the children around him?

It will take a great deal of strength to meet these thrown words with grace. And he will need to do it often, I’m sure. I’ve seen how the other children look at him on the playground, and I hear them ask simple and honest “Why doesn’t he have hair like us?” They cannot know that their simplicity is painful because it’s complicated for us.

It’s funny how we want to be proud of our scars, but we’re still keenly aware of their unique quality and it bothers us. It’s too easy to compare, come up short, and sometimes even lash out as we feel our own differences.

This day, Chase succeeded. He did not scream – a huge victory for my small boy, I know. There will be times to speak up, but this day, it was better to be quiet.

And at the end of it, I don’t care how far off the ground his head stands; he can hold it high because he did the right thing.

Moment by moment.

Being Still

“We have working hands.”

I grew up believing that the busy person is the most productive person and being still should not come until all the work is done. All of it.

How I love it … And how it kills me a little every day when I fall terribly far short of all that needs to be done.

One afternoon not long ago, I stood at the front window, looking out over the front yard. A small boy in his puffy blue winter coat and red Spider-Man hat methodically lifted chunks of snow and ice off the grass, stacking them neatly in a pile on the sidewalk.

My daily routine suggests that the kids should get off the school bus, unpack their back packs, do any necessary homework or house chores, and then we stop to take a breath. My joy is in the “getting it done”.

Whether it’s personality, brain injury, or both, Chase can’t always handle the constant movement and input that comes with my style of productivity. To him, it is a vicious bombardment. And in those times where his brain shuts down as my parental arrogance revs up, the two of us struggle over every single thing. My home becomes a battleground littered most pointedly with aborted teachable moments.

So, that afternoon, when he asked me if he could play outside after the bus pulled away, I could feel the struggle. I wanted him to come in and keep going. I wanted to be somewhere other than standing at the window watching to make sure he was safe and well. I didn’t want to be still. But I said yes.

This is one way Chase helps me.

Because of who he is and how he best functions, I am forced to weigh down the moments and consider each interaction so very carefully — even more than I do with my other children. (though in all fairness, I should do it with them as well)

Do I ask Chase to do something because it is right, or do I ask him to do something because it is right for me?

Productivity is wonderful, thoughtful dialogue and parent-child boundaries are so necessary, and there will always be moments when we’ll need to do battle, but that winter afternoon was not one. For my desire to say no stemmed not from his best interest, but from mine.

So I stood at the window with my tea, taking a deep breath and actually looking around me as I stepped out of the hurry for a time. And then he looked up at me and grinned and I could see that what had felt like a compromise to me had actually been a great victory.

Sometimes being still is the most active thing we can possibly do.