And as I wiped dusty corners and caught the fresh cotton scent of new linens snapped wide and tight over soft mattresses, I could not help but ponder the part of the human existence that wants to put things into good order before a change.
Before the far away trip…before the surgery…before the last rites…before the baby is born…
There’s a silent moment when we wipe the slate clean and acknowledge that whenever, however, and if ever we return to this space, we will not be as we once were, and so we perform the same tasks we’ve done so many times before – just one last time before a change.
We wipe away the dust as if we can keep our dust-to-dust beginning and end just a little further past reality than our outstretched hands.
Whatever may pass, and whatever lies before me…
‘10,000 Reasons’, Matt Redman
Tomorrow morning at 11:00AM (CST), Chase will lie still and quiet in a CT scan to look – and hopefully find answer to – why both his lungs and kidneys absorbed significant amounts of radioactive iodine.
Having his hands taped still on the scan surface
The only cells that should absorb the glow of that days ago pill are the cancer cells. And while it could be some sort of anomaly causing his lungs and kidneys to glow so bright for the radiologists, there is the very real shadow of multi-organ metastatic disease – the clinical words for rogue cancer cells in places they should never, ever be – driving percentages of survival down as they spread.
It might still be an anomaly. And Chase has never been one for percentages, thank you Jesus. But today, the kids and I cleaned the house.
The re-scan of his lungs and kidneys
Because after tomorrow’s CT scan, we will either be granted a reprieve of treatment, as originally planned, or we will be entering a fight for Chase’s life – the likes of which I suspect we have not seen since the beginning.
And sometimes, when we must face the dust-to-dust reality of the air we breathe so tenuously in the space around us, we push back the dirt, snap and spread the fresh linens like a semblance of control, and then remember that all that really matters is the Love we’ve been given and the love we have to give.
He cried “Please, Mom, NO!” while they slipped the needle into his already bruised skin. The third time’s supposedly the charm and it wasn’t a great start to the treatment day.
When the labs were finally done, the pastor came in and held a small red funnel near the bed, holding it out to him as he sniffled and wiped his tears. “Chase, do you know that God will give you peace? He says not to worry, but to talk to him, and he will give us peace in our worries. In fact, he will give us so much peace that we might as well need a funnel to channel it into the daily life.” He put the red plastic into Chase’s outstretched hands – “I was trying to think of a picture of peace for you, and so I brought you a funnel. In fact, I got this one from Ace Hardware. Have you ever heard of that store? I think they might have had something to do with this very hospital unit.” He smiled and Chase giggled for the first time since entering the lead-reinforced room because Ace Hardware was a major catalyst for the new-built space he sits in and they both know it well. “I wanted you to have something in your hands to remember – so that every time you hold this funnel, you think ‘peace’.”
Chase smiled, putting the funnel to his mouth, like a trumpet, and said “peace”. And then it was in my hands too. “Say ‘peace’, Mom.” And the funnel passed to each person around the bed, whispering the word ‘peace’ before Chase spoke up once again: “Can you put it on your side of the line, Mom.” He gestures to the red and yellow tape stretching like a caution across the papered floor. “I want to be able to keep it after today, okay?” And I nodded as we whispered ‘peace’ once more, and then gathered around his bed to pray for him and this thing that he was about to do. And no sooner was the ‘amen’ spoken before staff started entering the space. Nuclear medicine to oversee the dose, oncology to oversee the patient, doctors and witnesses because this was both a momentous and cautious thing centered around a boy in a plastic-wrapped bed and a rolling cart with a tiny, sealed vault containing a single cancer-burning pill.
At then, at 2:04, with all the people standing around him, he tipped back the cup (with his gloved hands – because the pill should not even accidentally touch his skin) swallowed it down, and blinked at the nurses and doctors around him: “Is that all there is to it?” And we laughed because his words were classic you-and-what-army Chase.
But that easy swallow wasn’t quite all. The nausea set in quickly like a chemo, just not as intense. He slowly sank into the bed, growing more quiet and restless, until sleep finally came late in the hours of the night. “Why did I need to do this?” The question was whispered across the line from his curled-up little body in the bed.
And when he sighed and turned, I walked to the line on the floor and whispered – fighting my own impulse to reach for him, comfort him – “Can I do anything for you?”
And he sighed. “Just pray for me.”
But joy has unusual ways of coming to us in the morning. And when, after the second Geiger count and consultation, they said “We’ve never – in the time I’ve been in this hospital – seen things happen this quickly” – I just smiled and said “It’s Chase.”
You see, Chase’s size (or lack thereof) – the very thing it’s hard for him to accept on most days – meant that his radioactive dose was lower, which meant that his time ‘behind the line’ ended up being shorter.
Texting ‘across the line’ with Lurie Foundation family
Chase was discharged from the hospital in twenty-six hours.
He is still in a soft isolation – the part where we remain six feet separated – and anything that he touches needs a little extra care, so we are not home yet, but we are not in the hospital anymore. And while we miss family and the gift of casual touch, we are hopeful that we will be back home and with family by Monday night.
Nicole (nuclear medicine) and Alyssa (child life specialist) surround Chase to celebrate his bravery in the treatment
On this following Thursday [11/21], Chase will undergo a full body scan to monitor the effects of the treatment and what areas of his body “light up” with cancer. And there might yet be another treatment or surgery in his future, and there will be frequent checks and blood drawn as he recovers from this, but because of how long these tiny grams of radioactive iodine will live quietly in his body, the teams would most likely not even consider more treatment or surgery for at least a year.
After eleven months of sitting with this second diagnosis and wondering what the next step will be, in these last weeks of 2019, it is suddenly easier to breathe. With the payment of these short days of tears and separation, a year’s time has been purchased.
And isn’t this the way of cancer and pain and life? Love and hope are the only things you can take across the line that aren’t waste, there are always parts to do on your own where the only thing that reaches you is prayer, and then – just at the moment you’ve reached your limit, there’s an unexpected joy and the clouds part to show the very thing you’ve fought just gave you an unexpected gift – because pain is never the end of our stories when Jesus writes them redeemed.
Thyroid cancer, meet radioactive iodine. We won’t miss you too much. See you – or not – in a year.
Moment by moment.
“Keep Running” – Margaret Henry Photography
Then you will experience God’s peace, which exceeds anything we can understand.
And now, this morning, there are zero days left to wait.
Today, for the second time in his fast, yet long nine years, my precious boy will start treatment for a cancer.
The second cancer.
The second time this second cancer has showed up in his body in these last ten months.
The first time Chase fought cancer, passage was was measured in months and marked with the times we nearly lost him.
This second time Chase will fight is measured in mere days, but it is marked already with a profound separation.
There have been so many tears – of grief, anger, frustration, fear, pain, and sometimes even joy. But the thing with the tears is that after they rain down, they dry up.
And then hope comes again.
BECAUSE CANCER IS NEVER THE END OF THE STORY.
This is not what we would choose, but we move into it, knowing that even in our separation, we are never alone.
We are heartbroken, yet peaceful.
It is time.
We are ready.
Moment by moment.
Weeping may last through the night, but joy comes with the morning.
Psalm 30:5b
He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain.
Revelation 21:4b
**After ten months of diagnosis and fifteen days of preparation, while the rest of the 4th graders round out their last few hours in their corner classroom, Chase will lay in a corner hospital room and swallow radioactive iodine, thereby rendering him a radioactive danger to those he loves – for the sake of cancer eradication. For the next 5-7 days, Chase and anything he touches will be living in a prolonged state of separation (both in the hospital and at another location) in which he must remain at least six feet from all other people – until such time as he is officially “cleared”. Please pray for Chase and our family as we walk into the unknown.**
We say they have a strength we could never comprehend.
And it’s all true.
But they’re also weary and fragile and maybe afraid too. They are the parents who stand with broken hearts and empty arms.
Over the last days and years, I have had the honor of learning from them as they stay patient and brave around my awkward, overwhelmed attempts to comfort. So on this, the last night of September, before Childhood Cancer Awareness month fades away, here are these words of mine… taken from many of their actual words…and they are meant for me, for you, and for all of us who love the grieving and don’t always know how to help.
There is no textbook for grief: Just like a deep reservoir of water, grief is powerful even when it might not be fully known beyond the surface. And a drop might leak out, or the whole damn might burst, but the depths are often unplumbed even by the one experiencing the grief and there is only the now – the next breath. So if that breath is used to sob. Accept it. If that breath is used to curse. Accept it. If that breath is used to laugh. Accept it. It would be all too easy to put the bereaved into a box full of ‘should’. But the heart of loving someone in grief is not to impose a correct set of actions, but occupying the same air and breathing it in and out with them – however that looks in the moment.
There is no timeline for grief: Like water and time, grief is a wearing, carving, near living thing. Just as flood waters erode the land, so grief can chip away at the landscape of the heart and mind. Eroded rock is some of the most beautiful landscape in the world, especially as the sun shines full upon it, but it does not look as it once did and it never will again. It is beautiful simply as it is – wrought by time and the elements. So do not expect the bereaved at two weeks to be the same grieving person you see at one year, or two years, or even five. In some ways, the more removed from the moment, the more they hurt. Every moment heals the wound while simultaneously ripping it open a little too. For these parents, they are one breath farther from the moment their child died in their arms. But they are also one moment farther from the last time they held their child at all. Healing and blood, tearing and scabbing and scars – they all go together forever and there is no timeline. We do not always know how the grieving are changing, only that it will be beautiful in the end. And for now, there is only the breathing it in and breathing it out with them – however that looks in the moment
There is no cure for grief in this world: There is no Instagram filter for death and no platitudes that dry tears. Put them aside, please. After something burns, it will regrow in time, but it might not look like it did before. The burn that destroyed the soil left its mark forever. Likewise, there is no ‘getting over’ or ‘getting past’ the death of a loved one for the grieving. The absence of someone deeply loved leaves a noticeable, felt trauma. The skin around the scar will grow back stronger, but the nerves are closer to the surface too. So why should we desire the grieving to ‘get over’ it? To recover as if nothing occurred would be to negate the loved ones’ impact in our lives. Why would we desire this for them or ourselves? There can be no getting over, only getting through it because we were not created for separation, and in this, we can breath it in and breath it out with them – however it looks in the moment.
And dear ones, it’s not accidental that these grief analogies are tied to elements of the earth because just as the earth came about, so did grief. We were created gloriously, and then it fell apart and now there are tears and horror and un-comforted sorrows – all as old as the earth itself. And someday, the pain will be gone. We will be together again – the grieving and the lost – under the perfect light of the One who gave us life in the first place. But until that day when all the tears are gone and the pain is wiped out forever in ultimate joy, I believe with my whole heart that we have a responsibility to those who grieve. We have a responsibility to let them feel deeply. And to do this, dear ones, we must sit with those who grieve. We must just share the air with them – sometimes with words – many times without.
So I issue you this challenge as I stamped it on my own heart in the writing today: Perhaps we are not to speak, but rather to listen. Andperhaps we are not to change the course of the grieving, but they are to change our course. Together, we walk forward.
Moment by moment.
“For in grief nothing “stays put.” One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral? But if a spiral, am I going up or down it? How often — will it be for always? — how often will the vast emptiness astonish me like a complete novelty and make me say, “I never realized my loss till this moment”? The same leg is cut off time after time.”
C.S. Lewis, A Grief Observed
Note: One of the richest, most raw and real pieces I’ve ever read on grief is A Grief Observed, by C.S. Lewis (written after his wife died of cancer) – I would highly recommend this resource.
“Relying on God has to begin all over again every day as if nothing had yet been done.”
C. S. Lewis (Collected Letters)
It’s funny how a single day can change everything.
I was sitting in the top of a football stadium along the river separating Ohio from Kentucky, the sun warming the still air all around us when I saw a new message on my phone.
And everything changed.
For eight months now, the anchor in in the harbor has been a “wait” word. Wait and see if the cancer grows back. Wait and see if it grows into other new, breathing lung places. Wait to even look with an ultrasound because these kind of cancers grow so slow. And these doctors who see the worst and the harshest…? Well, can you blame them if they don’t want to over-cut thin skin, over-treat weary souls, over-anything these precious littles? I certainly can’t.
But the scared places in my heart wanted to blame and scream to stop the wait and start the fight. The cancer is slow in other bodies, but cancers seem to like Chase’s body too much, and the last one grew fast like a wild fire in the wind.
Four to six whole months to even peek inside… the pictures and news would come right before Christmas and his tenth birthday. Four to six unchecked months for the cancer to go and do anything, anywhere. And of course, it might not go anywhere. But this is Chase we’re talking about and he tends to have the outlier story; the road less traveled journey.
But then, a message read against the sun’s glare on my phone at the top of a football stadium changed everything just a bit.
For, you see, sometimes doctors change their minds. They talk to each other and pour over the charts and histories and results like a holy grail of sorts, and then they turn to each other and question why they should stick to the idea of four to six months when Chase is a blink-of-the-eye kind of boy. And so, instead of waiting for cold weather and holidays, the message said we do it now, in just a few days at the peak of the pre-Fall warmth.
And yesterday, with a simple phone call, everything changed again.
Because it’s not just the scan that comes in a few days, dear ones. Sometimes doctors change their minds about treatment too. They chart and think and test and then they turn to each other and question the wisdom of leaving cancer to grow in Chase’s body where it grows too well despite official prognoses and data. And so, while treatment may not be easy for Chase, it is a precaution that has gone from a distant possibility to an imminent reality.
For the first time since October of 2013, our sweet boy will officially go back into treatment.
It’s silly and crazy, because we’ve known to expect this since we heard the words “It’scancer” back in January. But it feels different now that it’s here, and it feels urgent in the speed of a changed decision. And I think at the end of the day, the best way to describe our hearts in this is ‘joyful grief’. We are so deeply thankful that the wait is over for now, and that the doctors looked to each other and came up with the answers that were heavy on our hearts. We did not have to fight them for these changes. They came to our conclusions on their own and that’s a blessing of the best kind when doctors have to be like family members on the regular. So there is joy in that oneness of mind, but there is grief too. Once again, we push into pain for the long term benefit and willingly subject our precious son to incredibly hard things for the sake of his future quality of life.
We have been told that we will hopefully know more by the end of next week. And it could all change again in a second. But until that time when the results are known, through that time of tests and procedures, and beyond – whatever may come – as long as breath remains – we cry out for grace and strength in the …
…moment by moment.
[All pictures are from this past weekend; fulfilling Chase’s dream to finally see his friend Robbie Gould play in real time. All our love and thanks to the Gould family for making this dream a reality for Chase.]
