Answer the most heart-breaking question of all, because it somehow always overflows on a hospital day: what if I get the cancer again?
Chase uses his “name stamp” (used for signing books) to stamp Dr. Lulla’s hand
How do you explain that hours-long, intense testing has nothing to do with cancer? …yet has everything to do with cancer? It all feels the same when you’re a little kid. The same rituals, pains and fears; never mind that there may or may not be atypical cells attacking. It all feels cancerous and scary when you’re seven.
But tomorrow morning isn’t about what’s happening. It’s about what’s not happening. Chase’s body doesn’t want to grow on it’s own anymore, so for the first time in a long time, he’ll be admitted to the day hospital and they’ll attach needles to inject medicine and more needles to take blood. And then they’ll do both over and over by the hour until they have enough to prove that cancer damages. Because the sad truth is that there’s no funding if it can’t be proved on paper, submitted, filed, bottom-lined, than our reality is just that: ours alone.*
Talking to new friends about hope
There is no self-pity in that truth, I promise. There’s shock and sadness; a deep desire to be known, but not pity. Not now, not today. Because I believe above all things that this tomorrow and all the days have a purpose we do not yet know and cannot yet appreciate fully. This test day tomorrow is just more gazing into the mirror and beholding an unclear, somewhat painful reflection.
We will breathe through the pain of damage and the desire for wholeness, but the heartache is so very real, and right now, Chase’s fear sits on the surface of, well, everything. He has struggled all week, including throwing off constraints where and when he can (like refusing to get on the school bus) — anything and everything to try and find control when he has so very little.
A dad and his boy
Will you pray for Chase tomorrow? We’d so appreciate it.
“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
Thank you for giving us hope where there was none.
Thank you for reacting to our shattering news as if it was your own – even though you do it over and over again with each family.
Thank you for being a clinical advocate – taking on each and every problem with a precision and logic that cut through the fear.
[credit: Jan Terry]
Thank you for knowing when to scrap the clinical and look us in the eyes as suffering human beings, not just the nearest and dearest to a medical chart waiting to be updated.
Thank you for backing us up and encouraging us to trust our gut instincts.
Thank you for letting us cry.
Thank you for giving us permission to laugh.
Thank you for being an encourager – always pushing us to see the very best and beautiful in the hospital staff around us.
Thank you for learning our names, our lives, and remembering them.
Thank you for learning every nickname we ever gave Chase and what he was like as a person – all on the outside chance that he might not scream at you when you came into the room.
Thank you for learning the names of Chase’s siblings and pieces of their stories – a heart-wrenching acknowledgement that Chase was not in a void and there was a different life outside the cancer.
Thank you for fighting for our future.
Thank you for investing in our present.
Thank you for seeing Chase as a life to be lived.
Thank you for being our advocate.
Thank you for all the things you did that we’ll never fully know or understand.
You somehow make the unthinkable more bearable, and for that, you will always and forever be considered a trusted friend and a precious member of our family.
Love always,
The Ewoldt Family
Today, Wednesday, January 25, 2017 marked the end of an era. Chase has been off chemotherapy and the scans have overall been stable for so very long that it is time: Chase’s file is being transferred from the regular neuro-oncology clinic to a place called the STAR clinic. The “S” in “STAR” stands for “survivor”. Chase is now officially considered a survivor of his cancer. I can hardly breathe for writing those words! And while he will still see many of the same teams of doctors (and there will be many teams – as Chase still fights a great many things), there will be one very significant change: today was Chase’s last official appointment with Dr. Rishi Lulla, the attending neuro-oncologist who has overseen his case from the first moments of July 31, 2012. We consider it the highest honor to have had Dr. Lulla oversee Chase’s treatment and care and we hope to see him in the halls of the hospital some day soon!
ENCOURAGEMENT: /noun/ the action of giving someone support, confidence, or hope.
Giving support to others not only requires mental and emotional energy, but also and often a shade of vulnerability. I have to open myself up to help someone else. And this aspect of living in community, well, it can get complicated when I’m heartsick and weary. How can I possibly care for someone else when I feel in shreds…when my family feels shredded and resourceless? I suppose I expect to care and serve others out of my own excess of peace or joy. So how do I give joy when I don’t feel it in my life…when there is seemingly no excess? And how on earth do I teach my kids joy in the atypical?
I worry for the other three all the time: how will Chase’s cancer diagnosis harm them? How has all of this defined them or broken them? …perhaps even in ways we can’t see or won’t know until they’re adults themselves? (2:00AM thoughts that push the ‘panic’ button)
Will they struggle with what to believe? …with who and how to love? …with their life purpose? And how many of these struggles will they be able to pinpoint the birth of in a sibling’s terminal illness, subsequent struggles, and the too-often mentally, emotionally, or physically absent parents who should have been at their sides.
I want to fix all of these things before I even confirm their brokenness. I want to pre-empt all the pain and cushion it. And I acknowledge in my heart and even as I see with my own eyes that it often isn’t the big moment kicking in the teeth of their precious hearts, but the little one. If L-O-V-E is truly T-I-M-E, then it really is a moment by moment fight for the good to win through all the pain and craziness.
And here’s what I’ve found: there is so much I can’t take away from them, but there are things I can give them – almost like tools to build or weapons to war. Because life may be atypical, but it can still be incredible – it may not always be “good”, but it can still be right.
“Share each other’s burdens, and in this way obey the law of Christ.” Galations 6:2 NLT
Share.
Obey.
We were created for this. Despite the vulnerability and pain, we survive as we share the ups and downs of life with each other.
What does this concept look like in a feet-on-the-ground, eyes-open-wide way ? And what does it especially look like when the burden is a life shadowed by complicated illness and the burden carriers are little children?
FaceTime in the hospital
Notice Others: A huge part of developing encouragers is fostering awareness of those around you. Go around the dinner table and have each person say something they like or appreciate about the person to their left. This makes us have to consciously consider the good in others, and as we see this, we often see their hard things to comfort too.
Seek To Relate: “Do to others as you would like them to do to you. (Luke 6:31 NLT) This goes one step deeper than just seeing the person next to you. Actually try and put yourself into someone else’s shoes. Try to feel what they feel. This can be complex and even offensive in painful moments, but painfully easy and wonderful in life’s joy moments. And perhaps, there will be a fantastic and interesting discussion as you tie what your kids know and feel to what someone else close to them might know and feel.
Be Authentic: There are few things that can’t be worked through by talking to each other honestly and openly. If we genuinely don’t know what to say, I believe it’s okay to express that inept or powerless feeling and talk it through. This is often the most vulnerable moment, but also the most rewarding for in opening my heart, I invite the other person to open their heart as well.
Celebrate Victories: Some victories will look like winning and others will be simply refusing to let the darkness, weariness, stress, or anger in. To feel the pull of pain, to deny it, and to choose joy or hope instead is a staggering victory and should be celebrated as such. (These moments aren’t always deep and nuanced. For some people in our family, this is as simple as forcing themselves out of bed the morning after a long day in the hospital.)
Just Stop: Sometimes I just have to stop and sit. Gather up my precious babies onto my lap, or under my arm, kiss their heads and tell them I love them. We cover ourselves with a blanket and just snuggle for a bit. Then, I breathe deep and say it aloud: “You guys, let’s just take a minute.” Because nothing tears at the heart and mind like constant, unabated stress and sometimes, miraculously, the petty fights and little hurts resolve themselves as we breathe deeply and remember love, not hate.
Just Go: Yes, sometimes we need to stop and breathe. However, other times, we need to get up and go. Hang the schedule and the clean house or the project that’s still not done… just go for a walk together, go to the park together. Or, even better, go check in on a neighbor, take popsicles to someone who just had surgery, take coffee to Daddy at work… These small things, especially the things that allow us to serve others are a constant, tangible reminder that we were not created to function in a void and that our personal pain, stress and hardships do not comprise the only story in the world. Breaking down the boundaries, meshing with others, reaching out – all of it – is like water on the tender growth of sensitivity.
Orchestra concert cheerleader
And dear ones, I hate writing list points because it feels like accomplishments checked off and won. The truth is: we are broken. We fail at these ALL the time, scratching each others’ eyes out with our words and our selfish hearts just as often as we hug and bind with joy. But I’m writing these things down all the same because I need to remember, and maybe, just maybe, you’ll find something encouraging here too. You are loved.
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 1:4
During a recent event at Macy’s historic Walnut Room (which is a story for another blog entirely…), our family had the pleasure of meeting Jon Hansen, a news correspondent and host on Chicago’s WCIU.
Our children immediately fell in love with his energy and joy, and so, when Jon invited Chase and me to come to the west loop to record for his current events show, we were thrilled to join him.
It was a joy to talk about Chase’s cancer story, finding hope, amazing organizations, and other things that you hear me say all the time, but in truth, the best and funniest part – the show stealing element – was, of course, Chase himself. Keeping track of yourself in front of a television camera is one thing…keeping track of a squirrelly six-year-old who just discovered his mic is another thing entirely. 🙂
