Of Pirates, Pioneers, And Being Heard

As he stood before me, he nodded somewhat unwillingly. “Okay, fine. Just one picture…”

Chase was going to “his hospital”, and he was going as a pirate.  Because nothing says “this is who I am” like a pirate costume. Due to a slight cold, I would not be joining them on the oncology floor that day and so it was extra special because it was “time for just Chase and Daddy” – the very best.

Occasionally, I drop hints in my writing about Chase’s aggression and I have trouble doing much more than that for several reasons.  I think mostly because there is rarely any redemption or beauty that would benefit you from reading about it in greater detail. It is sad and ugly and Chase is deeply ashamed of it. Whenever we talk about what happened during his angry moments, he dissolves into genuine tears, promising never ever to do it again.

And so, there has become this other quiet side to our lives that in some way seems less real because I don’t write or talk about it the same as I do other facets, and yet, it is extremely real and taxing in our home and on our family.  

Over the years, Bob and I have experienced shock and judgement on the occasions when Chase’s struggle rears it’s head in public.  There are comments and suggestions, and the response that always breaks me a little: tears and the quietly whispered aside – “I don’t know what to say but I’ll pray”.  I think I’d say that same thing to me if I were seeing it from the outside for the first time too. 

And over the years, as people have witnessed the struggle in hospital and out, we’ve been told that we as parents were overindulgent and we must be spoiling him, that Chase needed boundaries, that he needed more control over life choices, that we were giving him too many choices, that we weren’t treating him normally, that we were treating him too normally, that the anger was his reaction to the out-of-control-ness of life in cancer treatment, that it might be the anti seizure medication he takes every day, that it stemmed from anxiety, that we needed to change his diet, that we needed to change his supplements, that we needed to change his environment, that it could be circumstantial, and various other things.

We’ve thought many times about getting help for him, but weren’t even sure what “help” should look like or who should provide it.  We were often told that he was too young and his brain was still developing too much for anything to be of assistance, and were even told at one point that some specialists had no paradigm for a child who’d been through the extreme brain and emotional trauma that Chase had experienced.  It was as if everybody knew on some level that it was happening, but nobody knew how to deal with it or what was at it’s root.  A very isolating feeling.

Hearing that it was something we were doing was especially difficult. In the first week that Chase was diagnosed, Bob and I had determined that one of the very best gifts that we could give him was the gift of normal.  His life had become extraordinary and we desired to keep that out of his way as much as we could, and so, we instituted loving boundaries in and around the chemo and treatment.  How do you give a “time out” to a child whose life is a giant hospital bed punishment? You can’t… but maybe if a toy got thrown in anger, then the toy went into time out for a few minutes. Small things like that – the things that made him like his brothers and sister, like the other kids outside the hospital walls.  But it was a constantly changing situation in which we were (and still are) always having to weigh out what’s chemo damage, what’s tumor damage, and what’s Chase. It was during this early season that I found the phrase I love so well: “There are only so many hills you can die on.” But despite our efforts, the rages continued unchecked. We felt like we were doing everything good parents were supposed to do. How was this our fault?

We plunged forward and fought these fights ever week and sometimes every day, and yet, we’ve felt largely unheard.  Not because anybody’s ignoring us, but because I truly believe that the pediatric cancer survivor field is still significantly unfolding in this area. Think about it: Chase’s cancer has only been defined by name for about twenty years and it’s only been about seven since his treatment began as a clinical trial, changing statistics from completely terminal to marginally terminal, and suddenly, Chase’s generation of survivors are living long enough to really see what happens after the dust settles.  Some days, our lives feels like the cancer equivalent of the old Oregon Trail – where we just circle up the wagons and try to survive. 

Bob and I often liken Chase and his treatment to a house fire. When he  was rushed in with his large mass, he was a house consumed. The teams of doctors were almost like teams of fire fighters, working collectively to extinguish the deadly blaze on all levels. You do what you have to do to save.  And then we were done and thankful… But, who helps rebuild the house?  You can’t expect the firefighters to do that for you.  

This is ultimately what lead to Chase going to the hospital as a pirate this cold winter morning – we were on a search for builders – master builders. (Sorry, this is what happens when you’ve watched The Lego Movie a couple hundred times with your kids) It was time to work at rebuilding and Chase’s primary team of doctors had recommended that he was now old enough for a neuropsychology evaluation.  We were cautiously optimistic, having been warned that it may not explain his aggression, but would definitely show some of his strengths, weaknesses, and how he learned.  But we could still hope. Maybe there would be something – anything – that could provide us with a clue as to how we could help him.

And so it began, hours of testing, piles of paperwork, and then a two hour meeting for which I was conferenced in. And Chase sat in the back of the doctor’s office and over the speaker on Bob’s phone, I could hear Matt Redman singing “10,000 Reasons” from the iPad. Some things never change. But what we learned in the meeting was both life changing and life amazing.

I marvel how so many cancer parents know exactly where their child’s tumor was located in the brain.  I am not one of those parents. I asked some other crazy and weird stuff at the time of his diagnosis, but I never asked exactly where the tumor was located. At 6cm with midline shift and tumor cell metastasis, it seemed to be everywhere.  Which is why it stopped me dead in my tracks to realize for the first time in three years that Chase’s tumor decimated his language center.  Did you hear that? Chase shouldn’t be able to talk.  I need to say that again because I want it to really sink in.  Chase shouldn’t be able to talk.  Those of you who have met Chase know the truth, and I’d like to think that through this blog, even those of you who haven’t met Chase know the truth.  Chase talks.  Oh my word, does he talk! And well, too. So take just a moment and breathe in this insane miracle of a brain that, freshly cut and traumatized, made the decision to move knowledge to a safer area, and compensating for itself, retained power of speech even after hours of being open on an operating table. God is good.

But the damage and the compensation and the radiation all carried a price and it had to come from somewhere. In this meeting, we found out that it had been taken out of a few areas, including Chase’s executive functions – his emotional regulation.  

What followed were long and breath-taking explanations in which instance upon encounter began to click into focus and understanding for us, and several times, I was tempted to burst into tears on the conferenced call just because the meeting was the most incredible revelation.  

There are only so many times you can be told that you’re doing something wrong as a parent before you begin to believe it, and this meeting was the first time in a very long time that it was acknowledged and known beyond a shadow of a doubt that Chase’s aggression isn’t due to something we’re doing or not doing. There is damage, it is real, and we learned that there might actually be ways to heal, or at the very least, help.

There is not a magic cure. The process of working with a traumatized brain like Chase’s is a life-long one.  There will be more therapies, more meetings, and possibly even medication to help retrain and replace some of what has been lost.  And this will change and grow as Chase changes and grows.  

So why do I share all of this?  First, because if someone had told me three years ago that survival would be this complicated, I wouldn’t have believed them.  And there are a lot of struggling survivors around almost all of us, so look to them with understanding and grace.  Second, neurological issues are often simple in their exhibited symptoms yet mind-blowing in their actual complexity. So, the next time you’re in a store and you watch a mom deal with a screaming, wailing, kicking, on-the-floor child, know in your own heart and mind that it could indeed be an issue of boundaries and you might do something different if it were your child…or it could be that her child’s shirt hides multiple port scars and his hat covers a giant resection scar and that mama is dying just a tiny bit inside because she doesn’t know why he’s on the ground, what made the anger so great over something so small. And as you watch her, know that she’s been to places that broke her and she’s being broken once again in the aisles of a store and she wishes for just a second that things were different.

We are so deeply thankful because, three years ago, we didn’t even know if Chase would live let alone function, but we are weary parents, and the bald pirate has a long road of work ahead. So we rely on neurological sciences, survivor breakthroughs, and prayer – knowing that our seemingly accidental stumbling through it all is part of a good and hope-filled master plan. And we begin yet another facet of this life . . . moment by moment.   

“…More than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening conditions.” – St. Baldrick’s Foundation