Ellie’s son, Chase
The clinic waiting room wall was green. It had always been green, but I hadn’t stared at it like I was staring now. My eyes felt glued to the wall before me and I looked at the bright, grassy color as if I could see through it, absently tracing the silver words marking the direction “hematology and oncology” … “waiting area” … but all the while, I was focused entirely on the voice of the oncologist coming through the phone pressed to my ear, focused on the words that had me feeling frozen in place.
The day was January 17, 2013 … 170 very short, yet intensely long days since we had first heard the diagnosis words “there’s a large mass”. Our 2-year-old son had been diagnosed with an aggressive, malignant central nervous system cancer that sat throughout his brain and spine and the prognosis was grim. There had been so many days in the hospital and so many drugs and complications. Proton radiation – our last-ditch effort to save Chase’s life – had ended a couple weeks ago and the first MRI post-radiation had just taken place. For the last several weeks, the whole holiday season, we had sat with Chase, holding him close, wondering silently and mournfully if this would be the last season we’d hold him.
But we weren’t even out of the hospital when Chase’s oncologist called with the results. I heard without hearing… “scan shows no current evidence of disease” … “cautiously optimistic” … “right where he should be”… “continue treatment.”
I remember turning to my husband and hugging him, calling family and friends and sharing the cautiously joyful news. And all the while, my stomach was dropping and my skin felt cold. That day should have been one of the greatest and best days of our lives, but all I remember when I think of it now is the green of the clinic wall and how sick and overwhelmed I felt.
The infamous grassy green wall Ellie stared at in the clinic waiting room
When we first faced this idea of a terminal brain and spine cancer, we deliberately chose to live in the moment with Chase, making the most of his time with us. And yet, it was nearly impossible to not also want to prepare the heart and mind for separation – the worst-case scenario. We would talk and cry late into the night in those early days, and while it was difficult to articulate, we more or less believed that there were two potential roads ahead of us: the aforementioned worst-case road, and (what felt like) the utterly unattainable and ideal road of being completely healed and moving on.
It turns out that there was a third road. And as I look back, we started on that road on that January 17th night in the waiting area outside the oncology clinic: the survivor’s road.
Chase in July 2014
The survivor’s road is a unique one because it’s a slightly different path for every single person who travels it. However, the last decade of Chase’s life has borne witness to the single unifying reality that on this road, there is almost never such a thing as complete healing.
For Chase, it started with the massive holes in his executive function that left him vacillating between tears of frustration and uncontrollable rages. These moods were compounded by the confirmed hearing loss he suffered.
Then, there were what is considered the “standard damages” that come from brain and language center trauma like needing to re-learn the meaning of words and how to hold a pencil; how to help the brain recognize intersecting lines. (I remember the early days of sitting with him and practicing drawing an “X” …over and over and over until he could attempt it himself without wanting to throw the pencil across the room.)
But then more damage started to unfold… benign cavernous growths that plagued the brain. Cataracts in both eyes that required separate surgeries for each eye. Skin break down, permanent hair loss… the list of these “small things” goes on and on.
And then came the secondary cancer. Almost six years to the day, the oncologist stopped me in the clinic hall, this time, no phone, but face to face talk about the MRI. “We saw something near his thyroid. It’s probably nothing, but we need to make sure.”
It wasn’t nothing.
It was another cancer.
Then came more surgery, radioactive iodine therapy, and endless tests and consults.
Chase being examined in 2023
Chase’s systems became overloaded as his body processed and for the first time since his brain surgery seven years prior, he began to have seizures again. Shortly thereafter, during a test to monitor the level of iron damage to his liver and kidneys, his heart landed him a cardiology team to monitor low systolic function.
And as I write this, Chase is currently recovering from yet another surgery to remove several sections of skin in order to biopsy for skin cancer – a (tragically) not uncommon reality for children who go through significant radiation treatments at a young age.
But why list the damages and grievances? After all, life is hard for everyone and if this was a difficult list for me to summarize, I’m sure it was far harder for you to read.
But I’m writing the list of damages and grievances, and I’m telling the story through Chase’s trauma and scars not to complain that life is hard. But rather, to illustrate that, for a child who survives their initial diagnosis, the ‘survivors’ road’ never ends.
Chase waiting to be examined
This isn’t brand new information. In fact, we work it into our very words as we describe our children’s progress. I remember just such a conversation from that January MRI day.
“Is the cancer gone?” I asked naively.
The reply was that such a direct question was hopeful but unknowable and the best and most accurate answer was that there was “currently no evidence of disease.”
We were to hear that phrase “NED” or “no evidence of disease” many times. And we were to use it too. It is a helpful phrase, but it is a thoughtful phrase that reaches deep into the truth of childhood cancers: it speaks to the reality that all the tomorrows can’t be known, but for the moment, there doesn’t seem to be danger. It’s a phrase that speaks of winning a battle while never truly winning a war. The door is always left slightly ajar for another surprise piece of difficult news to slip inside. Because finding no evidence of disease does not mean a child is cured.
Wouldn’t it be amazing to someday see the war be won? …truly won?
Dear ones, I believe that much has been accomplished, but it is not yet enough…
It is not enough to survive when the child cannot thrive.
It is not enough when a parent or caregiver must impossibly decide between certain death or certain damage.
It is not enough to eradicate the initial disease by way of condemning a young and hopeful child to life-threatening and complicated side effects.
It is simply not enough…
Because “evidence of disease” or not, childhood cancer is still a lifelong diagnosis.
Kids deserve better. Help fund research to find treatments with less late effects.
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