Cancer Rock Star

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Last week, I made a foray out of the hospital to the new Target store. It is gleaming and bright, though fairly picked-over because of its popularity. I was nevertheless able to find what I was looking for, which was primarily stocking stuffers for the boys.

At one point, through the forest of clothing racks and displays, I heard a distraught mother raising her voice to one of her children.

“Your brother is a cancer rock star! He fights cancer every day.” She proceeded to berate the healthy sibling for an unknown offense. When he eventually said sorry, she accused him of being disingenuous and continued to rail at him.

A Little Perspective

The point of this outburst of ugliness isn’t to portray another parent in a poor light. Surely, she is under a lot of stress, toting around two children younger than school age, one of them undergoing treatment at St. Jude. We all have our moments, and she was clearly struggling with the task of managing her munchkins, both hanging off the side of the shopping cart. Who knows what else she has to cope with or what history led up to that moment.

What troubles me more is the idea that the ill child is a cancer rock star and the sibling is… what exactly? This is precisely the reason the Giant Kids camp in New York awarded trophies to all of the siblings. Aidan has been forced to deal with Colin’s illness in a way that Colin has not and really in a way that it more brave.

People often comment on how brave young children are when they face their disease, continuing to focus on playing and other mundane activities. In my mind, bravery is to act in the face of fear.  To be sure, there are many things for children to fear, and there are junctures where they overcome these fears. However, so often, the suffering associated with cancer care isn’t optional for the child.

Whether we are reaccessing Colin’s port, which he now finds unnecessary torture, or even changing the dressing on the port, which seems equally bad in his mind, he has no choice in the matter. We hold him down and subject him to it because we have to, and he endures it whether he is being brave or not.

As I say, this is suffering, and it is awful. He adapts to these things, both in anticipating the unpleasantness and learning what things are worse than others. This dynamic has changed dramatically with his overall improvement and increased awareness. The good thing is that he can be reasoned with for the most part, but the bad thing is that he is sometimes simply too smart for that and he knows what is coming.

As for the matter of a child’s ability to play, this is one of the gifts of childhood. Children live in the moment and are not burdened by adult concerns. We savor something as simple and classic as Colin’s delight in the acquisition of a candy cane, as well as his impish desire to hold onto it and never let go. Misery in one moment, if trivial enough, may be wiped away in the next. We have all seen a child’s tears transform into laughter under the power of distraction.

The experience that these children go through generally transcends that simple mechanism, but adaptability also serves them well. Colin, like other children, has made tremendous adjustments based on his situation. Where he has failed to do so, we push him forward regardless.

True Grit

From my perspective, what strikes me most about these young children who go through treatment (for cancer or other serious illnesses) is their resilience, rather than bravery per se. Colin has absolutely that if nothing else. He has bounced back from so much already, and it feels like his spirit drags his body along for the ride.

In macho movies, there is often a character who has been seriously injured who at some point throws down his crutches and leaves his ailment behind in order to save the world. I sometimes expect Colin to do something similar, especially when he swings his legs around the side of his wheelchair like he is going to get up and walk across the room to go cook in the play kitchen.

Of all things, it is this quality that I admire most fervently and that has always spurred us on. From the beginning, we were assured that Colin’s toughness would serve him well through this adventure, and every indication is that it has. We know that it will not be the only factor in determining whether we are able to eradicate his cancer, but at least it puts him in the race.

Fear Factor

There is a large extent to which Colin is unable to articulate the fears that he must feel. Of all things, this is the hardest bit of suffering to watch. Rarely does he express true fear, but it is awful to see and may even be inspired by something that appears fairly benign to us. The greatest reassurance that we have is that he is unlikely to remember his experiences here, though who knows how much it will shape his personality anyway.

On the other hand, Aidan’s fears are more apparent and well articulated, and he is old enough that we are certain that this experience is shaping the person that he is becoming. Among us all, Aidan has been forced to be brave in the most inspiring way. He has little information about Colin’s condition and the least control of all of us.

The other day, he told me that he just wants Colin to not have cancer any more and come home. When he does, will he still have the trach? I admitted that I didn’t know but hoped not.

“I hope he doesn’t. I don’t like to look at it in his neck. It looks uncomfortable. If I had it, I would try to pull it out and throw it on the ground. [Pause, getting silly]. I would throw it at your computer. [Pause, sillier still.] I would throw it at anybody who came in the door.”

Aidan’s dialogue of increasing silliness reveals a lot about his fears and his squeamishness regarding the extent of his brother’s medical neediness and bionicness. Faced with a bag of packed red blood cells (unambiguously vampiric), when I asked him what he thought it was, he squirmed and said that he knew but didn’t want to say the word.

This is so outside the realm of his former experience, though as adults we have adapted to it as being completely normal. I thought it would strike Aidan’s scientific mind as interesting, yet I clearly missed the mark. When we fail, it falls to Aidan’s shoulders to remind us that he is a big boy, but still a boy.

There are surely many fears about Colin that are still trapped inside Aidan’s head. As much as I would love to peel that onion apart, I also know that I can’t possibly dictate the process. He is being incredibly brave in ways that I don’t even know.

In short, this is why the cancer rock star comment really struck a chord. As much as there is so much in Colin that we are in awe of, the same is true of Aidan. Aidan’s body doesn’t fight cancer every day, but his spirit is fully engaged. If anything, we struggle at how to express our admiration and gratitude rather than think to compare him negatively against his brother. 

The focus is constantly on Colin, either concerns about his health or kudos for what seems like the most rudimentary achievement. Woo-hoo! Colin opened his mouth! Everybody clap and cheer.

C is for Chemotherapy

Aidan’s accomplishments are much more significant by comparison and less lauded. We try our best, yet the lack of parity is still evident. Sometimes, it is difficult to praise his reading skills when he is visiting Colin in the hospital, has picked up the chemo precautions sign that we have trimphantly removed from the door, and reads it fluently. Before the age of six, “chemotherapy” has become a sight word for Aidan.

(Or, click here for the video if you can’t access YouTube: https://www.colinlovestractors.com/wp-content/uploads/2009/12/VID-00006.3GP)

After my outing to Target, I picked Aidan up from school and told him he was a rock star. In utter disbelief, he replied, “No, I’m not.”

It was definitely a too-complicated-to-explain moment. Both my kids are rock stars, even though they play different instruments in completely different bands.