The life and stories of a cancer ninja
In case your day needs a little smile…
Chase was the dragon in his school play — and do his teachers know him, or what?
He worked so hard to memorize his line: “Need some help. I’m really hot. I could breathe fire, or maybe not.” And at times, it was hard to know where Chase left off and the dragon began.
But oh my heart, have you ever seen a cuter dragon?
-MbM-
So, yeah…
It was a long weekend and we spent too much time feeling blind in a lot of different ways.
And surgery can take the cataracts out of him, but never the “boy“.
We took a walk in the bright and sun on Sunday and he kept a blanket, hood, hat and sunglasses all over his swollen, ultra light-sensitive face, but he hopped out of the stroller for one minute to do this…
Because, you know, it’s Chase.
And after a while, you learn to expect the unexpected.
-MbM-
This week, I had the honor to guest write for Way-FM. They asked me if I’d be willing to write about the seasons in life that come with no answers, and fully acknowledging the irony of answering the unanswerable, I undertook to wrestle through this. And I’m so glad I did! God is faithful and good.
I hope my wrestling blesses you as it did me. I’ve included the first few sentences here to get you started and then click on over to Way-FM and discover where I ended up with my answers.
-MbM-
“There are no words in any language that adequately express the emotion felt when hearing the phrase: “There’s a large mass”, no way to express the feelings that wash over the heart and mind when these words are spoken over the body of a two-year-old boy.
But, I know I’m not the only one who has heard words like this and Chase isn’t the only one to carry cancer like this.
How many times have I heard other stories?
Have you heard them too?
The friend whose breast cancer was gone for thirty years and then relapsed…
The small child who had every advantage that modern medicine could offer and still stopped breathing…
The parents and family and friends with empty arms and an un-fillable void in their lives…
Cancer is a bully – a vicious beast robbing us of our health, resources, relationships, and perhaps most frequently: answers. Nurses look puzzled, doctors shrug, and all people – from every possible religious and cultural background – weep, pray, and go through various rituals to beg for answers that will bring peace and change, and most especially, healing. As if somehow, understanding the unfolding horror will make it suddenly more bearable…”
We sat curled up on the bed – just her and me – the only two girls in this whole house full of boys.
“Do you want to talk about it?”
Darcy’s nearly ten-year-old voice was calm as she described almost dispassionately what it was like to discover her two-year-old brother having a seizure when she was only six. And then, her tone changed and suddenly, like a full-fledged adult, a hand came up to her face as her eyes welled up. “I’m so sorry…I don’t know what happened. Sometimes I can’t talk about this without crying…”
Oh, how I know that feeling! Even when Chase is in the next room – living, breathing, and probably getting into trouble, the flashbacks can still take my breath away in an ordinary conversation.
Darcy and I ended up talking for a long time and crying some too, and it lead to these words… Because sometimes I forget how hard this is for her, Aidan, and Karsten.
![Aidan, Chase, and Darcy [photo credit: Jan Terry]](https://i0.wp.com/www.chaseawaycancer.com/wp-content/uploads/2016/03/Siblings.jpg)
Set the tone for understanding — To a child, sickness (of any kind) is contagious. I didn’t know this until we talked, but that early Tuesday morning when Chase was taken to the ER and Darcy and Aidan cowered in the shadows of their room, Darcy kept watch over two places. She told me she’d go to the window and check to see if the paramedics had taken us out yet, and then she’d go back and check on Aidan to see if he was seizing too. She stood in the dark of the room and thought it could be all of them…all of us. It would be some time before she and Aidan fully understood that cancer could not be caught from or given to another person.
Presence can mean peace — They say nothing is worse than whatever you imagine and I think it may be true. We couldn’t always bring siblings to the hospital because Chase was in isolation so frequently, and our gut was to keep the very worst of diagnosis and treatment from them on some level, yet, Darcy told me that the times she felt most at peace were when she could either come to the hospital and see Chase personally, or when we’d FaceTime from our room in the oncology floor to Grammie’s house. She could see the IV cords and watch him vomit, but she could also see that he was alive and that was what brought her the most joy – just seeing he lived.
Set the paradigm — This one is kind of interesting to process because Bob and I actually didn’t have the luxury of telling our kids Chase had cancer. We were completely separated from them for a full week and their grandparents had to tell them before they found out from a third-party as loving friends surrounded them in those first days. But that being acknowledged, we’ve found (through trial and a lot of error) that explanations whenever possible can be very helpful. Whether it’s why Chase was getting gifts and special attention or why mom and dad seem so distracted, tired, or weepy, sometimes an age-appropriate conversation provided better understanding than pretending it wasn’t happening, brushing questions aside, or simply evening out special gifts among siblings. Our family motto has become: “There’s nothing we can’t talk about”. Hard, but good.
Help direct emotion — Chase’s siblings cannot live through all that they’ve seen and not be significantly changed. Whether it’s memories of me laying on a gurney clutching their motionless brother to my chest or listening to kids making fun of a post-treatment Chase behind his back, there is a lot of fear, hurt and anger. A lot. We spend a significant amount of time talking through how those feelings of fear or angry protection are a completely normal human reaction to what they’ve experienced, but it’s what they do with those feelings that will define them. We pray often that these things would make them and not break them, and that they would be strengthened in compassion and prepared to defend the weak because of what they’ve lived. And then we try and find ways to apply it to the every day.
Be prepared for deep feelings — This one surprised me and still does. Somehow, I expect that a lot of what we’ve gone through went over their heads. Not so – at all. They may not understand the word “terminal”, but they can sense it. There have been times that Darcy wanted to sit and talk and then others, like when she’s at school, where she hasn’t wanted to talk about Chase’s story at all, but she’s very aware of it and who she is in it. She explained that the kids don’t understand and the teachers all want to hug her and while she appreciates the love, both of those things make her feel very vulnerable. She doesn’t want to cry at school, but sometimes she needs to come home and just have a good cry over it.
Look for seasons of rest — Having a sibling with special cancer or neurological needs is as full-time for them as it is for us as parents. Whether it’s making a concession over parental attention, curtailed family activities, partaking in extra “cancer activities”, or interacting with a neurologically, emotionally, sometimes physically demanding playmate 24/7, I sometimes don’t even realize (in my own exhaustion) how tiring living with a cancer sibling is for my other kids. But Darcy could explain it to me; sharing how sometimes she can’t handle Chase anymore, but other times, she misses him and is slowly learning to listen to him when he demands her attention because he says things like “I’m a survivor, Dars!” (his pet name for her). And like adults, the siblings can have a layer of guilt over annoyance during a stressed family dynamic – especially when it’s towards a family member with a terminal illness. The guilt alone is exhausting.
There’s just no wrapping these things up. They’re messy and the dynamics continue to unfold as the kids change and grow and Chase lives on in his complications and joy. Some days are beautiful and could be used as parenting seminar illustrations and others feel like a complete wreck in which we need a bomb shelter rather than a house, but spending time with Darcy on this subject reminded me once again how good it is to just sit, talk, and pray together. We are not alone.
Moment by moment.
“Teach us to realize the brevity of life, so that we may grow in wisdom.” Psalm 90:12
How do you live out what you know? And how do you live out what you know when what you know is pain?
Chase has felt many needles. Needles for chemo, needles for blood draws, needles to keep him hydrated and pass life-saving medicines into his veins. So many times, his skin has been pricked and prodded – his hands, arms, chest, and even the heels of his feet. If you look closely, you can still see many of the scars.
And somehow, somewhere along the way, needles became synonymous with band-aids. This kid has accessorized with band-aids, played with band-aids, covered his arms with them in the hospital play room (which scared the living daylights out of his doctors who thought each of the ten band-aids up his arm were genuine) and competed against siblings for who has the most (spoiler alert: it was almost always Chase).
Band-aids have been a part of his life and a sign of his pain, and yet, this last week when his kindergarten class celebrated their “100th Day” of classes, Chase wanted to cover his “100 poster” with band-aids.
So, we sat at the kitchen table and covered a poster board in the little brown pieces of adhesive and we talked. We talked about gauze and flushes and old stories where he had screamed and been afraid. Sometimes just being around the familiar supplies is enough to trigger the memories. And then, just at the moment it all felt a little sad again, we decided to look at the things we were most thankful for in those memories. And you know what? There were quite a lot of things for which to be thankful.
These band-aids started as a picture of hardship and ended up on a poster full of memories. I can’t help but wonder if the moment pain crosses into beauty is the moment it forces us to be thankful.
And as he painstakingly wrote out “Chase 100” on the top of his poster, he paused for just a second to consider, and then added an exclamation point. As he finished, he turned to me and explained: “Chase. 100. Exclamation point, Mom. Do you know why?” He ran on before I could have answered if I’d wanted to. “It’s because this is happy. You put an exclamation point” his lips curled extra hard to form those words; “when things are happy.”
So there you have it . . . Lessons drawn from a band-aid, a poster, and a little boy who has been so brave.
Moment by moment.
