It Wasn’t Supposed to be This Way
By Ellie Ewoldt
The January rain fell heavy and cold in the early evening, leaving the shining dark of the expressway to reflect the endless break lights of rush hour traffic.
“Ellie, about the MRI results…I hate to add one more specialist, especially since there are already so many, but I think Chase needs to see a cardiologist…soon.”
The disembodied voice of Chase’s nurse practitioner echoed inside the space of the car, louder than the rain, louder than the beat of my own heart. Glancing in the rearview mirror, I noticed Chase with his headphones and was thankful he wasn’t paying any attention….couldn’t hear the words being said.
Outside, the car in front of me inched forward and I followed it, feeling hemmed inside the lanes of stacked traffic. You can breathe, it will be okay, my brain quietly reminded as the nurse talked on. And yet… it wasn’t supposed to be this way.
The MRI was one of those strange, unexpected, yet routine parts of long term survival. The test had originally been ordered after clinical data pointed to iron overload in patients treated with regular transfusions during chemotherapy.
Of course Chase had regular transfusions. Sometimes, I swear, that bag of red blood was the only thing tethering his worn out soul to his battered body on the worst of the chemo days. But years down the line, the very blood that so often and radically saved his life decided to make everything a little more difficult for his liver. So the MRI had been ordered as a precaution to monitor the iron in both his liver and his heart.
Sadly, but not at all unexpectedly, Chase’s liver has a mild iron overload. But that wasn’t the news that had the nurse practitioner calling me on the way out of the city in the rain. Oh no. You see, as the MRI had snapped its noisy images and Chase slept in merciful anesthesia-induced unconsciousness, the machine caught something nobody expected: the slightly depressed function on the left ventricle of Chase’s heart.
Once upon a time, before we signed all the papers and started the treatment and fought for Chase’s life, there had been heart words and tests to “establish a baseline”. In fact, a routine echocardiogram was and will forever be one of Chase’s routine tests because of the treatment his heart endured. But somehow, when a decade passes and the heart stays stable, it begins to feel like it will always be stable. It begins to feel like maybe there was a collateral damage that actually passed Chase by.
It wasn’t supposed to be this way.
Within five days of the rainy night in traffic, we met with a cardiology team, sitting with a doctor who specializes in post-oncology cardiology cases like Chase. As we sat around the desk with the oversized computer screen, the black and white images facing us like an explanation — like pictures of a heart’s ejection fraction would make this more real — the doctor said many things. In fact, it was as I heard all the new and different terms that I realized how accustomed to oncology words I had become and how very much this felt like the first days of Chase’s initial diagnosis. Those early days were the last time doctors said a lot of words that I didn’t understand.
That was the last time I felt such a strong sense of What does this mean for Chase?
That was the last time I saw looks in eyes and tones of voice that made my own heart feel weak.
And at that time, I hadn’t been brave enough to ask, but this time, I found my voice to ask the worst and most outright question:
“Is Chase in heart failure?”
It wasn’t supposed to be this way.
In case you’re wondering, dear ones, the actual failing is when a human heart can no longer sustain the metabolic function of the body. And right now, Chase’s precious little heart is sustaining his body, despite all the treatment he went through at a too-young age.
These words — that define what failing is and isn’t — are words that, like a transfusion, tether us to the earth when everything feels too overwhelming. But we still had to tell Chase. We had to tell our beloved child that the treatments intended to save his life have also hurt him…again.
It wasn’t supposed to be this way.
As we thought about talking to Chase, I flashed back to standing in the living room of my parents house, two months into the nearly two years of treatment. We were making treatment decisions, looking each other in the weary, tear-filled eyes and I remember coming to the decision that we needed to make our peace with that day in 2012. We needed to make our peace, knowing that we were doing the best we could for Chase with everything that was known in 2012. We also needed to make our peace with the reality that better things might be too late to help Chase — and that worse things might happen that we couldn’t have predicted. I remember that day like it was yesterday. And dear ones, we made our peace.
But, even with that 2012 conversation in our hearts, the reality of the now, the reality of new and continued damages even a decade later is horrible. And Chase? Well, even with all of his neurological and developmental challenges, he is old enough now to question in a way he never has before. When he was little, it was always just sort of a Why does this have to hurt? talk; but now he’s old enough and cognizant enough to go deeper, to wound as he has been wounded and I don’t think I will forget his anger and frustration as long as I live:
“Why didn’t you just let me die of the cancer, Mom? Why did you let me have all the treatments if they were just going to hurt my heart?”
As his words hit me, I wanted to scream or cry…or both. There shouldn’t be moments when a child literally begs a parent to know why they’re still alive.
Brokenhearted words were on the tip of my tongue.
“Because you wanted to live, Chase! Two-year-old you was happy and strong and you wanted to live and we wanted you to live, so we gave you the best shot we knew how!”
Maybe I should have spoken them aloud, but the words felt too small in the face of his big, hurting questions. They felt like a justification of sorts, too. And there really is no justification for the sorrow and brokenness Chase has been through in his lifetime. I honestly couldn’t think of any words to make it better.
It wasn’t supposed to be like this.
Dear ones, to this day, I don’t know what I might have answered him, or even if I could have answered him well. But as it turned out, I didn’t need words because Chase himself gave me the answer. Almost as quickly as his anger had flared, it quieted in a quiet, serious question:
“Was it because God had a good plan for me, Mom? …because I had to do special things?”
And then his voice changed, sounding more strong, more convinced:
“I have special things to do in this life.”
I cannot say it better than Chase.
It wasn’t supposed to be like this. But even as we grieve his hard days and brokenness, even as we add a cardiology team to his ever-growing roster of specialists, even as we process his understandable anger and frustrations, we all remain certain of this one thing: Chase has a special purpose in this life.
Knowing this doesn’t remove the grief or suffering — not by a long shot — but it drives it.
We move forward.
Purposefully.
It wasn’t supposed to be like this, but welcome to survivorship, dear ones.
Moment by moment.
**In March of 2023, Chase had repeat heart tests that indicated he is holding steady. His cardiology team said it’s not uncommon for high risk post-oncology kids like Chase to circle a weakening heart diagnosis many times. At this point, it is unknown if Chase will someday slip into that failing place, or if he will continue on the edge of it, as he is now. His next tests will be shortly after he starts 8th grade in the Fall. In the meantime and always, we choose hope.**
The Ewoldt family has worked with St. Baldrick’s for many years, helping to raise awareness and funds for research to develop better treatments with fewer lasting effects. Visit StBaldricks.org to learn more about our mission to Conquer Kids’ Cancer.
