Over and Over Again

Dear ones, 

Chase will be having another surgery.

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. 

Tears or not… choosing thankfulness. 

Moment by moment. 

Of Grabbing Hands, Comfort Words, and Invented Machines…

Dear ones,

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.”

Jeremiah 29:11 [NLT]

Trusting The Process

“What do you want to be when you grow up?“

The interview question came quick and benign, probably one of the most common questions to ask a child, and yet Chase, propped on a stool in front of cameras and lights, stared at Robbie with a blank look on his face.

The principal stood in his blue suit in the center of the gym with all its sounds and smells, welcoming the room and I watched him over the top of the fuzzy head sitting next to me. High school.

There was a table set up and stocked high in merchandise branded with the school logo and colors and Chase reached for a shirt that said “Class of 2028” – “Can I get this one, mom? I’ll be alive in 2028.”

In the last several days, there have been an unusual number of moments to look forward. This facing high school and growing up… it is such a gift. Too many of Chase’s friends did not have this privilege. But it is a strange thing to walk hand-in-hand with the kind of diagnoses Chase has and to think forward – beyond simply the next moment.

There is a strange (though by no means bad) tension in this space. All we have is today, and yet we walk about with plans for the next year, the next decade… and further still. It’s a blessing and burden in equal measure because time is a gift, but we are not promised more of it.

I walked through the halls of the high school last night, seeing decades of trophies and black and white pictures, all standing witness to a length of time. And I heard Robbie’s question again:

“What do you want to be when you grow up?”

And then I heard the oncologist’s voice in my head… that first meeting on a hot, August day:

“Let’s just see if we can get him to age three.”

What a place to be…

Trusting the process…. Moment by moment.

[picture: Chase is pictured here with a beloved music teacher who – though he does not want to sing in school – he is trying to convince to teach other subjects so that he can be in her class. One of her most used phrases is to “trust the process” and I’m co-opting it here as we look forward with fear and wonder in equal measure]

Note: Dear ones, I needed to write through the strange tension of this place we find ourselves, but in all seriousness, I’d greatly appreciate prayers for Chase. This is a big step. These are the years when children truly lean into impending adulthood and we, none of us, know exactly how much of that adulthood Chase is capable of. I suppose what I’m trying to gently say is that the physical and neurological differences between him and his peers will most likely go from noticeable to insurmountable in many ways. I know it will be good. But it will also be hard. MbM.]

THANK YOU

Dear ones, from our family to you…

THANK YOU.

Because of you, in honor of Chase’s 14 years of life… wow, just look at these numbers!

$1,789 for Cal’s Angels wishes to be granted for kids like Chase.

$8,749 [$4,374 each] to be given to Anthony Rizzo Family Foundation and Lurie Children’s Hospital – specifically to help families like ours [ARFF] and to promote further pediatric oncology research and better care [Lurie].

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]

Of Birthdays and Good Things

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!).

The Lurie/Rizzo link is together right here.

The Cal’s Angels’ wish link is right here.

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.

Thank you!

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