Neuro – Page 2 – CHASE AWAY CANCER

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)

Farther Along

Farther along we’ll know all about it
Farther along we’ll understand why
Cheer up my brothers, live in the sunshine
We’ll understand this, all by and by… Josh Garrels

The word is in and the news is out: we’ve been given the gift of more time. It’s a heady feeling and a deep one too as the responsibility of shepherding such an incredible, atypical life is something we do not take lightly.

In the last two days, Chase has had a complete brain and spine MRI, an ECHO, a hearing test, a procedure to clean his ears and check for tubes, and a hearing re-test – in addition to meeting with his endocrinology and neuro-oncology teams. The days have been physically and emotionally packed and Chase did an AMAZING job – even undergoing an IV and the MRI sedation process with less medicine than usual; a decision that made him far more cognizant during needle pain and separation from us.

Chase’s hearing is going, but is stable for now (no more excuses about “not hearing you say to clean up, Mom“…) and the ventricles of his heart are strong (something we do not take for granted in a post-chemo body).

And now, the moment of truth: the MRI…

STABLE.

The monitored growths continue to expand, but all teams involved feel optimistic that they don’t show cancer characteristics. The biggest concern right now is that the largest growth is getting close to a ventricle and that scenario requires both careful monitoring and possible intervention. There are also a few cavernomas (a cluster of abnormal blood cells) that are making themselves known and grown on the last few scans and those too will bear watching. In other words, for good, bad, and broken, Chase’s brain is showing the scars of its battle wounds.

This farther along day brings some answers, some more oxygen with which to breath, and a few things on which to take action.

First, while Chase’s official scans will be moved to even further intervals (a year!), he still needs to have small scans of the ventricles every six months to monitor growths and cavernomas.

Now, it is the time to prayerfully, carefully pursue growth hormone with the endocrine team as Chase’s poor, little body can’t do this on its own. More on this in the coming months, I know.

And last, well, the last thing I have to tell you deserves it’s very own written space. Stay tuned…

Moment by moment.

Chase checks out his MRI films with Dr. Lulla and Dr. Hartsell

What To Expect When You’re Expecting To Read “Chase Away Cancer”

For the last several weeks, I’ve been getting feedback both on the idea of Chase Away Cancer and now on the finished book itself. Everyone is being so gracious, but there have also been some threads of question and/or doubt woven in that I’d very much like to put to rest.

So, what should you expect when you’re expecting to read this book? Here are the three most common points of feedback that I hear. I hope with all my heart that the answers put your mind at ease and prepare you to join us on the journey.

1. “Well, I probably won’t read the book because I’ve followed along with your blog the whole time, so I pretty much know the story anyway.”

Yes…and super, really NO.

Yes, it’s true that if you’ve followed the blog or Facebook page, you have a good idea of where the story goes, however, this book was written from scratch (almost two whole times!) and while it holds some similarities (lessons learned, etc), this is the straight-up, dialogue-filled story of Chase’s diagnosis and treatment. I’m not kidding, you guys. You will be IN THE ROOMS with Bob and I as we make decisions on his treatment and life.

This is unprecedented openness for us — and it is so much so that over a dozen medical staff had to sign off on conversations and use of their real names. It’s so different from the blog in some ways that my own parents (with whom we lived during Chase’s treatment) read the book and immediately called us to say “Wow, we knew, but at the same time, we didn’t know…”

So, to sum up, put all ideas of a yawn fest aside. I kept you faithful story-followers and blog readers in mind when I wrote the manuscript – there will be plenty to learn, and dare I say, even …enjoy?

2. “I really want to support you and everything, but I’m really scared to read a book about a child who gets cancer.”

I would be too.

I can honestly say that if I hadn’t written this book, and somebody told me I should read it, I would probably approach it with some trepidation.

There will be some chapters that you’re going to want to have the box of tissues close, but there are other chapters that will make you laugh out-right and you’ll be shocked that you just giggled over a book with the word “cancer” in it. This is life with Chase. You laugh. You cry. And sometimes, you do both together.

My amazing editor and I (along with a gifted and highly skilled team) worked incredibly hard to make this book “breathable” – ie: you will feel what we felt in the sadness, but you’ll also feel our joy and you’ll find times to “breathe” and take it in as you read. In other words, you’ll get all the feels, but it’s unlikely to blindside you. This was written for joy and grace, not a shock value.

3. “But I don’t have a child with cancer.”

That’s the best news I’ve heard all day!

While it’s true that this book will probably speak most directly to parents of children with cancer, each chapter ends with something God taught us on the journey and the heart of the entire book is that LIFE IS MESSY, but GOD IS FAITHFUL.

So yes, your life might not include cancer, but don’t underestimate how the story might touch you, encourage you, or give you far greater understanding into the life of a friend who might be hurting.

Does that sound proud? I don’t mean it to be — but you guys, throughout this journey, I’ve been amazed that some of the greatest, most touching stories I’ve ever heard about what’s written on this blog came from people who were encouraged and given hope to carry on because they saw their infertility, their disease, their caregiving, their financial difficulties, their selling a house, etc, etc… (seriously, I could go on and on) through the same eyes as I saw a trial of cancer. Yes, my difficulties might look different than yours, but stress is stress and in that, there is a really incredibly universality in Chase’s story.

So, won’t you join us?

*Have other questions or concerns? Please let me know! I’d love to answer them.*

Moment by moment.

Of Joy And Grace In Pre-Op Rooms

You guys… The crazy coolest thing unfolded in the middle of this surgery day!

I’ve been posting pictures of people with their Chase Away Cancer books during this launch week, and I meant to bring my copy of the book to grab a picture of it with Chase in the hospital today, but between the stress and the 6:00AM surgery time, I forgot.

As we stood in the pre-op room, I lamented all of this to Bob. And the nurse working over Chase’s arm, looked up, smiled, and turning to the table behind her, picked up something small and blue, saying: “Well, maybe you can use my copy!”

You see, we met this wonderful nurse during Chase’s first surgery last month and she was so sweet to listen to us and comfort us during the surgery day, and then she went online and bought the book (!!). And she brought it with her today, knowing that Chase was coming back in. So he autographed it for her, and then she watched over him while he slept in post-op and recovery. And he even talked to her (a rarity for Chase with medical staff), asking her to remember to get him a popsicle after surgery and to please “keep it in your brain that I told you this”.

You guys… I’m just absolutely in awe of how lives weave together and how many times I’ve been filled with tears-in-my-eyes, goosebumps-up-my-arms wonder…IN THE HOSPITAL.

Don’t miss the grace and joy…

Moment by moment.

Nurse Carey, Chase, Panda Bear (on his best behavior), and Chase Away Cancer

**And seriously, Chase and all of us would LOVE to know where YOU are “Chasing Away Cancer”. Please post book pics to the Facebook site – they make our day!**

Surgery Update

It’s been a long day.

Surgery went very well and Chase went into it with Lucas’ name still written on his arm. He was a complete boss and even his Panda Bear (who, according to Chase, is really a dog named “Panda Bear” who can bark and is prone to getting in doctors and nurses’ faces and screaming) behaved himself admirably.

But since waking, he has been in a lot more pain than he was last time, his anesthesia “detox” has seemed a lot more difficult, and his right eye is quite weak, so with the left eye patched, he’s been navigating like he’s blind…when he walks at all. He’s miserable, but it’s over and done now, and for that, we are very thankful.

This is the hard season — the time when we try and comfort in the middle of the damage that we ourselves have allowed. It’s guilt-producing and humbling and would break us if not for the grace of God.

We are so thankful for your prayers and encouragement!

Bob was actually able to be off for the entire day (a minor miracle), we had a dear friend show up in pre-op to encourage us, Chase’s teacher and her family sent wonderful Spider-Man gifts, his class recorded a special video for him, Tyndale staff brought us dinner, and all the doctors and nurses have become good friends in the last month. So in truth, even though it was a hard day and will probably be a rough night, we are incredibly blessed.
And I’ve been getting texts of people with their books today – my heart is full.

Moment by moment.

Category: Neuro

The Horizon

Farther Along

What To Expect When You’re Expecting To Read “Chase Away Cancer”

Of Joy And Grace In Pre-Op Rooms

Surgery Update

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