We are still waiting on the confirmation for the date and time, but yesterday’s meeting with the plastic surgery team confirmed that a stint under general anesthesia and the complete removal of the areas of concern (and a portion of skin around them – present in two very different locations on the body) would be in Chase’s best and immediate interest – “to avoid chances of recurrence”.
Of course, those last words made us want to ask a million questions because “recurrence”, in particular, sounds like a cancery kind of word. But nothing of that will be known until everything is off his body and studied thoroughly.
It’s crazy, because most of us will have something looked at or removed on our skin in our lifetimes – and the majority of removals will be benign. But as we processed last night, we realized that it’s not really about the removal – the surgery. And right now, it’s not even really concern over what the biopsy results might yield. It is the heart-breaking weariness of one more thing. …the taste of drugs in his mouth, slipping into unconsciousness, waking in discomfort, itchy skin, open wounds… all of it. …and dear ones, he does it over and over again and has done it for all of the life that he can recall.
Last night, I asked him if he was okay and he said that he wasn’t…but that he didn’t really want to talk about it until we know the surgery date.
Yesterday’s routine dermatology appointment ended up being slightly less routine than what we had hoped.
Chase’s skin has some trouble spots and his dermatology team felt it would be in the best interest of everyone to send him to a plastic surgery team to talk about removing and testing.
We are still a mile down the road from an actual biopsy, and miles and miles away from a diagnosis (if there’s even one to be had) and the concerns for clean margins and all the other pieces that go along with this kind of a challenge.
But in the room and in the moment, Chase only understood the removal as surgery and the testing for abnormal cells as another cancer. And how do you put into words for the broken and burned out that yes, it might be surgery, but it’s not surgery like he’s known. And yes, they might test it and find cancer, but it’s not like any cancer he’s already known…?
The dermatologist and I both gathered around him where he sat, swaddled in a hospital gown on the exam table, trying to find a way to give him words of assurance even as eyes met over his head with the tacit understanding that there are never any promises – only the recalling and recounting what “usually” happens.
But he still drew in on himself, pulling his hands around his torso like protection, pulling away from us. And he was able to vocalize in a way 2 year old Chase with the brain cancer, and even 9 year old Chase with the thyroid cancer could not do. [and I love him for it]
“No! No more cancer! No more surgeries! NO. When I get older, I’m going to go to college and I’m going to invent a machine that will scan kids’ skin for cancer. There will be two buttons and it will either say yes, or say no…and no kids will have to have surgeries or needles just to check! I will go to college and invent this!”
He is so fierce.
And he is so broken.
And saying comfort words like “easy” or “good cancer” or “not a big deal” don’t cut it because Chase’s life hasn’t been “easy” or filled with “good cancer” or medical moments that were “not a big deal”. Chase doesn’t do easy and telling him this is going to be okay when he knows no such truth just doesn’t feel right, despite statistics.
But isn’t this how we do life with one another in grief and hard things? Sometimes, the comfort words aren’t comforting at all – not because they aren’t true, but because they don’t adequately serve the need to grieve in the moment. Sometimes, we just need people to sit next to us, grab our hand, and acknowledge that this is a bogus day full of icky garbage and it’s going to be okay again some day, but today isn’t that day. Sometimes we just need that tacit acknowledgement that life is broken and this isn’t how we hoped it would go…and that we don’t feel like we have the bandwidth to carry one more thing.
So, we’re grabbing Chase’s hands and sitting with him in this.
Choosing Hope.
… moment by moment.
“[childhood cancer survivors] have a strongly, 30-fold increased [skin cancer] risk. BCC [basal cell carcinoma] risk appears to increase with increasing skin surface area exposed. This knowledge underscores the need for awareness by survivors and their health care providers.”
–Long-Term Risk of Skin Cancer Among Childhood Cancer Survivors: A DCOG-LATER Cohort Study
“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.”
A grand total of $10,538.00 going out into the world to say “Hey, cancer doesn’t get to win today on any level.”
You all blow us away with your generosity of heart and mind! And as we turn to Christmas and making memories, as we take joy in Chase’s stability (he’s been back in school this week!), I just wanted to send out a final thank you.
Truly, we could not do any of this without you.
Moment by moment.
[Ewoldt Family holiday picture, taken by Margaret Henry, 2023]
On Tuesday, December 12th, Chase turns 14! Isn’t that a miracle?!
This year, he (again) had a request: his birthday fundraiser be equally divided between Lurie Children’s Hospital and the Anthony Rizzo Family Foundation. But there’s also a little extra, a special 14th birthday nod to his friend Robbie Gould’s new partnership with Cal’s Angels. In honor of Chase, we will also be raising a separate $500 going to Cal’s Angels in order to help grant a wish for another child like Chase.
We can’t think of a more fitting plan! Lurie has gifted Chase life more times than we can count, the Rizzo Foundation has instilled more hope, and Cal’s has brought more joy – Life, Hope, and Joy – all together.
Would you consider donating here? You can give $14 for Chase’s 14 years (or a multiple of 14…or more!).
Every dollar counts, and this year, it feels like it counts double…no, triple! …as the dollars will go to help a child like Chase and a family like ours – often in their most stressful, heartbreaking moments – in the home with Cal’s, in the hospital with Lurie, and around the country with The Rizzo Foundation.
With your help, we can contribute to research, resources, and encouragement for so many children like Chase.
Every year, in the middle of August when the school doors open wide, my dad stops extra and special to pray for my kids and he slips them a verse to hold close for the whole year ahead. This verse is always printed on colorful paper, laminated and trimmed so carefully by his own hand, and most importantly, is something he has thought and prayed through – often for months before the moment. He waits in stillness, asking the Lord what word is needed for all of his grandchildren as they head back into their classrooms for another year. And then, with verses in hand, he challenges them to hold the God words close in their desk, backpack, locker, or binder, so that whenever they see the colorful paper, they will remember that they are known and loved.
And every year, it’s something of a tradition for him to show up on the first morning of the first day and share breakfast with the kids, laughing and energizing them, and then talking through the verse and praying over them before they leave the house and the early morning sunshine around the breakfast table. But this year, his words came differently. They came, most purposefully, in the form of a letter, and I felt the printed words not just for my children, but for my own heart too.
So, with his permission, I am sharing the printed letter words with you here – this is Chase’s copy: becauseChase, but also because this letter, this verse, even the quote (only my dad – #girldadgoals – could mix the Bible and a Hallmark holiday movie together so well) speaks into the often broken-hearted, burned-out feeling of being other, of having nothing of value to offer, and even of hard life things that just don’t relent.
The letter is shared in its entirety below, and I hope it leaves you as it did me: knowing that we are each unique and purposeful, meant for good things by the One who loves us so. Now, here’s my dad to Chase…
Dear Chase,
This year, I’m sending you your school verses in a letter.
Why? Because you are a letter. Have you ever thought of yourself as a letter? You are. You’re a living letter, a living epistle, sent out to all you meet; at school, at home, at church, in your community, etc.
The goodness, kindness, wisdom, and love written on your heart is being shared with everyone the Lord brings across your path. In that sense, you are His letter sent out to put Him on display, and make the world a better place.
To remind you of your unique one-of-a-kind mission, place these laminated verses somewhere so you can see them often and be reminded of how special you are to God, and to others (like Mimi and Bapa).
In this school year you will definitely grow physically. You will also grow in your knowledge of history, math, science, English, etc… The most important area of growth this school year, in fact, in all of life, is your growth in godliness. And it is towards that goal that both Mimi and I pray for you.
The back and front of the laminated card reads…
“You are our letter, written in our hearts, known and read by all men; being manifested that you are a letter of Christ, cared for by us, written not with ink, but with the Spirit of the living God, not on tablets of stone, but on tablets of human hearts.”
2 Corinthians 3:2-3
“…we are all, in some way, living letters, unique souls, slipped into fragile human envelopes stamped by our Creator and sent into the world with a story only we can share…”
Signed, Sealed, Delivered: The Vows We Have Made, Layton, Williamson, Hallmark, 2021
