He doesn’t remember a time when there wasn’t cancer in the house; when his older brother wasn’t damaged, hurtful, screaming, and beside himself with pain. He was a sweet toddler who couldn’t yet sympathize with it all, so he became a witness to and – if we’re being very honest – a victim of cancer pain at the hands of a two-year-old sibling who didn’t understand any of it himself.
He is only six now and he’s tough as nails, but will weep at the thought of anyone in pain – ever. He has a love/hate relationship with Chase – wailing on Chase at times and wailing on anyone else who dares to disparage his brother. He is the youngest and yet he is not the baby. And he himself doesn’t completely understand why a scream turns him inside out, but I know. I remember how he would run during a lab draw, when neutropenia and pain left more monster than brother on the couch to his little baby eyes.
He will spend his whole life being a part of this and having it be a part of him, and by the grace of God and fervent prayer, we never stop praying that it will be the making and not the breaking of him.
The life of a cancer sibling is often a silent, supporting role. It has to be, and they do it so well. But here, in his own words, is Karsten – sharing a little of himself. This is raw, unfiltered, uncut – All boy, all brother, all laughter, all pain, all in.
Moment by moment…
Bullying [dictionary definition]: the use of superior strength or influence to intimidate (someone), typically to force him or her to do what one wants.
Bullying [Karsten definition]:the dictionary plus anything else he’s not a fan of Chase doing – a line of demarcation that changes every three to five minutes and may depend on how recently Chase has shared the iPad with him.
This post is dedicated to the siblings of children with cancer and special needs. Please never forget that we see your patience and bravery. You are amazing and beautiful in the struggle.
You were our surprise baby with your surprise personality and a most surprising life ahead of you that we could not have imagined if we’d tried.
We would apologize for our lack of expectation, but somehow the silly, crooked grin every time you perform the unexpected makes us wonder if you sort of just adore shocking us all.
Like living when they thought you would not…
Like walking when they thought you would not…
Like talking when they thought you would not…
Like a dozen other things that started as “NOT”, but you said “WATCH ME”.
You will always defy expectations, our sweet boy.
And somehow it’s only fitting that your cancer diagnosis includes the word “atypical” – because that’s exactly what you are and we love you for it.
Five years ago this morning, I doubt very much that five months were expected, let alone five years, but of course, you showed them and you continue to show us.
You will never have the easy life, my darling Chase, but you will have the precious life, for sure and always.
Whatever may pass and whatever lies before you…keep singing when the evening comes.
These days in the news, so there’s so much heartbreak – so much about people who use their position of influence for evil instead of good.
I can’t change the whole, but I can give you a peak into that sad news not being the only news. Yeah, maybe it’s the sad kind that sells, but quietly, powerfully, all over the world, amazing people are silently doing incredible things.
So, this weekend, let me give you a small peak into something wonderful. And I hope it will bless you as it has blessed us.
Many hospital fundraisers are well publicized, but there are some that are quiet too. This last week, we spent 24 hours with the quiet and the powerful, and dear ones, how I wish you could see what I saw…
The Lurie patient families gathering with each other and foundation staff; hugging and talking like long lost friends — because trials knit strangers together by their souls even when they’ve never met.
Lurie families and staff gather with actor, Anthony AndersonChase hands out Cliff bars with Julie, a member of our Lurie staff familyLurie patients and siblings in the photo booth
The three little neuro boys – who beat their odds and defied their statistics – running and tagging and giggling through a crowded ballroom full of VIPs.
The beautiful girl – thirteen long years in a wheelchair – who pushed up onto her braces, braced her courage and body against the podium, and told her story, shouting “Isn’t that amazing?” to a standing ovation.
Ellie and Chase
The leaders of companies, the heads of foundations, professional athletes and actors – one and all treating small children with big disabilities as if the children were the heroes whose autographs were sought and whose selfies were precious.
Selfie with Robbie GouldSelfie with Kevin Butler
The men and women who hand beautiful, expensive golf clubs without a care into the hands of small children and teaching them how to tee up and tee off.
The looks on the players faces when asked how the game is going – the shrugs and smiles and “That’s not why we’re here today. Today is for the kids.”
Chase met Mr. Butler last year and couldn’t wait to see him again this year!
The absolutely huge center for a pro football team crossing clubs like swords and falling “dead” to the ground under Chase’s cry of “surrender or die!” – all because he’s a dad too and he gets that kids are kids no matter what.
The players who paused their game (time and again) to sign their golf balls and give the kids rides in their golf carts.
Chase gets driving lessons from former Cubs pitcher, Kerry WoodLurie’s Aaron Conn with all the patients and siblingsMore driving with KerryChase and Darcy practice driving with former Chicago Bears player, Kevin Butler
The mothers and fathers who gave up their own families in the middle of crazy, busy lives to fly to Chicago on behalf of a children’s hospital.
Chase and Charlie with Anthony Anderson
The winners who took their signed football prizes in hand and turning, bowed over bald and broken children and placed the prizes in the kids’ hands instead.
Chase with Mike DeMatteo, giver of his signed football
The silent money that bought four pieces of children’s art, framed like the greats, for thousands of dollars.
The dozens holding a sign for a boy who wasn’t there because he was on the table for his ninth brain surgery – his second in two weeks.
Kerry Wood and Darcy support Team Matthew
And dear ones, so much more. So much more! I have as many small story moments treasured in my heart as Chase has fist bumps, high fives, and “Hey, do you know you’re awesome?” questions.
Chase and Robbie take a minute to perfect their lounging skills
The few pictures I took have names to them so you can see and know what and who you’re seeing, but dear ones, there are no names in the stories because they, the famous, the amazing; they wouldn’t want you to know. That wasn’t why they gathered. So, you don’t need to know all the names behind the stories, but I do want you to see a bit of their hearts.
And these hearts? Well, they raised well over $800,000 for the hospital.
Robbie Gould with the Lurie kids and members of the Ace FoundationRobbie speaking his heart
Quietly, powerfully, people are doing incredible things.
The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.
At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.
At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.
Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.
Moment by moment.
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)
10:15 AM —
In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.
7:30 PM —
You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!
Chase still has a headache, but perked up in order to help with his evening shot.
This week, I watched my daughter play with her cancer sibling. She’s 11 and is exactly the beautiful, frustrating conundrum you’d expect of that age, but in the one moment she held Chase in her arms, anything juvenile melted instantly.
When she holds Chase, she knows nothing, but she knows everything. Into that moment of holding go years of pain, suffering, frustration, and love far beyond anything we would have imagined or desired for a pre-teen.
Watching the expression on her face – half-sister, half-mother – it caused me to recall that she’s one of many. …and the many are on my heart today. So, siblings, this is for you.
Dear Cancer Sibling,
I may not know you, but I want you to know that I see you.
I see the pain of wondering of a beloved playmate is going to die.
I see that pain in your heart while the other kids your age don’t hardly understand the words let alone the concept.
I see you standing in the doorway of your house…a friends house…a grandparents house…while we, your parents and protectors pull out of the driveway and go to another doctor, another hospital, another appointment without you.
I see you standing quietly in the halls of the hospitals while doctors and nurses buzz around and make a deal about seemingly everything and everyone but you.
I see you in the shadows of the flashing lights when the only words they’ll tell you are “it’s okay” and “stay out of the way”.
I see how hard you work on that skill, that task, that sport…all for that one event someone will take pictures of and send to your absent parents.
I see you hiding in your room, trying to drown out the screams of a small child getting a needle plunged into their chest.
I see your frustration when your broken, sick sibling that you love so dearly hurts you as if they don’t care.
I see the guilt when you have a moment of resentment or wishing it all could have been different. It’s okay… we all have those.
I see the playgrounds and school halls through your eyes as you protectively and with a righteous anger watch social situations go over your atypical siblings heads or behind their backs.
I see you crouch low over their bed and tell them it’s going to be okay because you’re there.
I see you talking to and playing with the air in front of you as you live out their memories and remember their presence.
I see you watch the same movie, listen to the same song, paint with the same color over and over again just because it’s a fixated comfort.
I see you being the one who doesn’t get the special gift or amazing experience.
I see you stand helplessly by and watch grown men and women sob scarily and uncontrollably.
I see you having a different, often less understood life from the other kids around you.
I see you marking birthdays and holidays with an empty chair at the table.
I see you visiting a cemetery while your friends visit a park.
But here’s what else I see…
I see your bravery.
I see your unconditional love.
I see you standing up when you’d rather fall down.
I see you stepping up when you’d rather sit down.
I see the hard things developing justice and mercy in equal, beautiful parts of your soul.
I see you living out the truth that no child should ever be left out; left behind.
I see you developing a sensitivity to others beyond that of your peers.
I see hints and teases of who you will someday become and it takes my breathe away.
You will hold the world and you will run it.
Today, you may feel like the one abandoned, but one day soon, you will be the one who includes, who leads, who fights, who dominates and you’ll be able to point back to these moments when it felt like nobody saw you and you’ll say: “This was when I grew.”
So quietly, bravely grow, my dear cancer siblings…
You are seen and we can’t wait to experience the incredible person you become.
