Cancer – Page 10 – CHASE AWAY CANCER

Fighting For Love

Yeah, there’s coffee, and laughter in abundance, but there’s something else too. Something that only comes forged in pain. I don’t have a word for it, but it’s there to be cherished – oddly like a terrible battle wound. See this? We went to war and we survived. Isn’t it strange that the hard things often knit us as close (if not closer) than the happy moments? They say that “love changes everything“, but sometimes I think everything changes love: kids, illness, job changes…and often just the weight of years and the passing of time. Love is not a static, stoic concept, but it is deep, and it’s meant to be unshakeable as it mirrors Jesus love for us and in us.

So what happens when things like cancer come at a marriage? In the video below, we take a few minutes to share a little of what we’ve learned and are still learning today.

Because life is messy, love is going to be messy too – that’s the primary reason we sat in front of an iPhone on a Saturday morning with no make-up, no good angles, or fanciness of any kind.

This is us.

We are real.

We fail more times than either of us would like to admit to each other or you, but we will fight for our marriage. We must fight for our marriage.

And please don’t kid yourselves…this isn’t always self-generated or motivated by flowery love, but rather, determined commitment. We had people during Chase’s treatment actually holding us accountable to talking with each other, spending time with each other, even being intimate with each other…because honestly, truly, and messily…if we hadn’t had someone calling us out and reminding us of our marriage, we would have ignored it and ignored us. This is the nature of stress and real life.

The fact that we’re still together is the grace of God, but dear ones, if there’s anything we’ve learned, it’s that you’re going to fall. It’s a foregone conclusion – this is life. But will you fall away from each other, or towards each other?

Fight for each other. Fight to fall into each other’s arms. Things like cancer will seek to take many, many pieces of us, but fight to make sure marriage is not one of those pieces.

With love, messiness, and a deep-rooted longing for Perfect Love…

Moment by moment.

[Disclaimer: After you watch this, you’ll know why I write instead of talking…or why my spiritual gift will never be filming and editing a cell phone video. Just sayin’…go with your gifts.]

Sufficient Grace

I sat on the floor, the exhaustion depressing like a physical weight on my heart and shoulders alike.

Chase curled close, sniffing and crying, “Mom, I’m ready to make it right. I’m so sorry for getting angry. I promise to never, ever do it again.”

My heart screamed but my eyes were blessedly calm despite the pressure of overwhelmed tears. “It’s okay, sweet boy. I forgave you even before you asked. Hey…look at me…look at my eyes. Do you know how much I love you?”

He nods, sniffs, and runs away, heart light once again. The anger leaves as quickly as it comes.

No matter what happens, he needs to understand grace at my hands. If I fail all else, please God, let me be your hands to him.

But oh, my hands…how they hurt. Before the peace comes, there’s often scratching and biting. For, in this outside-the-box life, this is emotion to Chase. And the primary thing is to keep him and everyone else in his direct vicinity safe. So sometimes that means taking one for the team; for the family…literally.

As I sat on the floor, I wanted to let loose ugly, deep tears, but there are some things that seem too heavy and weary.

“God. I’m tired of the struggle. I can’t do this. I mean, I did it, and I’ll do it again, but years and years of this? I can’t, I can’t, I. CAN’T…”

And then, in the desperate stillness, I -who rarely ever “hear”- I heard. Oh, I heard as clearly as if someone stood in the cloudy room with me:

“My grace is sufficient for you.”

That was it. No answers, no fixes, but one thing that transcends the hurt that’s been and all the hurts that are yet to come.

Even as I prayed to be grace to Chase, my Abba became the grace answer to me.

The road is not easy, but I know I will have what I need.

Moment by moment.

“…I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me.” 2 Corinthians 12:8-9 (NLT)

Note: This picture story was published with Chase’s knowledge and permission and he even volunteered to take the picture. He is not proud or hurt, but understands that we share wisely to encourage others they are not alone. Please know that we do not take this particular challenge lightly, and that Chase’s case is lovingly monitored by social workers, neuro-psychologists, neurologists, neuro-oncologists, neurosurgeons, and behavior therapists. I hope this bit of raw openness on survivor challenges encourages you that you are not alone in your struggle. If you have any questions, please feel free to contact me privately at ellieewoldt@gmail.com. Blessings.

You Are Loved

“The faithful love of the Lord never ends! His mercies never cease.” Lamentations 3:22

“I can’t do this.”

His precious little mouth contorted on the one side – the way it always did when he became scared. “Mom, I’m not a first grader. I can’t do this. I need to go back to kindergarten.”

Behind his back, the window glowed with the last remnants of the sunset, signaling night…the night before school.

Chase shook his fuzzy, scarred head with each new sentence of voiced fear. After months of proudly proclaiming his being in first grade now and – including outrageous claims for privilege (“I should get to stay up late at night and watch Netflix because I’m a first-grader now, Mom.”) – the time had finally come and he felt himself unequal to the road in front of him.

His words flooded my heart as I heard echoes of my own timid voice in memory. Through his cancer, the ambulances, the hospitals, childbirth, even marriage… big things. Life things.

I can’t do this. God, I’m not ready for this.

I’m too young…

Too immature…

Too imperfect…

Too scared…

I need more time to prepare.

To get it right…

To be aware…

To make it count…

But here’s the thing with life… When I am blind-sided with my weakness and need, God is aware of the plan – my perfect life plan. And when things feel underdone and undone, out-of-nowhere, frenzied and stressed, He alone knows the ways to make them count for my good and His glory.

I knelt in front of Chase and put my hands lightly on his arms. Oh, how I wanted him to listen and connect with the words I needed to say. “Chase, you can and you will – because you are ready. It doesn’t feel like it yet, but you’re ready;” I paused, searching for the right words, “And, you are loved.”

You are loved.

In the hard moments when our brains acknowledge our good and His glory, but daily life throws gut punches that leave us lacking, gasping “I can’t do this”, it comes down to those very few words: I am loved; you are loved. These are the conduit from our head to our heart – from knowing what’s true to believing and resting in what’s good: His faithful love.

This had become a key sentence with my darling cancer survivor over the last several months. With his age and progression comes the increasing sense of “other”. He knows he looks different from those around him and often reacts differently too. He is strong, but it takes precious little for the remorse and regret to set in – and the fear too. I watch him feel unequal to the road in front of him and know beyond a shadow of a doubt that only perfect love can conquer this fear. And I know because I feel my own weakness, sadness and fear.

So, in the sunset before that August big day, as Chase lay his head down to sleep in that sixth year of a life we never thought he’d have, I grabbed the first piece of paper I could find (for it’s the words that are most important, not on what they are written) and I wrote what I believe…what I know and too often forget: You are loved. And then I tucked it, folded small into the blue top pocket of the crisp, new backpack to be found on the bus the next morning.

For truly, these words give a strength and joy like none other. And with these words, we are ready for anything life may bring – in His grace – moment by moment.

“See how very much our Father loves us, for he calls us his children, and that is what we are!” 1 John 3:1a

“Repeat them again and again to your children. Talk about them when you are at home and when you are on the road, when you are going to bed and when you are getting up. Tie them to your hands and wear them on your forehead as reminders.” Deuteronomy 6:7-8

Love Your Melon

In this house, in this winter, we’ve completely fallen in love with beanie hats.

Chase has favored them for a couple years as they keep his sensitive head warm and he can use them to cover his ears when he feels over-stimulated. However, this is this first year for non-hat-wearing me…and I am hooked.

Because I’m hooked, I’m also trying to hook you too. Celebrate cool weather, style, and childhood cancer awareness with a Love Your Melon hat! You guys, for real, 50% of the profits are given to fund research initiatives and provide immediate support to children battling cancer!

Chase post-MRI, sleeping off the anesthesia in a “Navy Speckled Beanie”

Get one for yourself, one for a friend, or request a hat for a child or family member battling cancer today.

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.

Category: Cancer