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Butterfly Blog

There Is No Security

As any parent whose child has gone through chemotherapy can attest, childhood cancer brings a host of challenges, issues, and difficulties to a family. One of the hardest things that a parent of a child with cancer must face is the loss of security. While none of us can guarantee our children's safety, most of us can be reasonably sure that, while accidents may happen, many accidents are preventable. With the right combination of diligence and paranoid OCD, you can childproof your house to the hilt so your kid doesn't get in the knife drawer, install locks and alarms on all windows and doors so your child doesn't wander outside and fall in the pool, and hover like a helicopter over your son at the playground to ensure he doesn't fall and crack his head. The practicality and wisdom of such measures is debatable, but, the point is, you can protect your child.

As the parent of a child with cancer, though, I can assure you that it is impossible to protect your child from his own body. The sense of security, the feeling that you can guide your child's life in the direction you want it to go in with proper diet, love, discipline, and protection--all that is ripped away from you when you learn that your child's blood is filled with cancerous cells. The loss of security is replaced with an all-encompassing, gripping, overwhelming fear.

My son's cancer has been in remission since October 1, 2013. With leukemia, remission is a tricky and loaded word. It means that there are no cancer cells detectable in a sample of bone marrow. However, leukemia is a liquid tumor--just because 100,000 cells are all non-leukemic cells doesn't mean that there are not still leukemia cells lurking in the billions of other cells in the body. That is why treatment is SO long for leukemia children--without the additional 3+ years of treatment that ensure the chemo is killing every last cancerous cell, 98% of children would quickly relapse.

So what does that mean in terms of security and fear? Well, I'll tell you. Chemo, as you can probably guess, makes children feel like crap. It makes them look like crap. It makes them act like crap. You know what else makes children feel, look, and act like crap? Cancer. Leukemia. You see, once your child's body has betrayed him once, the security in believing that he's just tired, having a bad day, fighting a cold, or having growing pains is gone. Instead, that security is replaced with a fear that is so strong, you are breathless when it comes on you.

I'll give you an example. My son whacked his head on the wall last week. It swelled up and bruised. Pretty normal, right? Well, the bruise is still there. It's been a week. My mind has gone to the dark place; to the place where the "R" word--Relapse--lives. The "R" word lurks inside every cancer parent's soul. When you least expect it--when you glance at your child while making his chocolate chip pancake and realize he looks terrible, and when you realize that the bruise is STILL THERE, just like when he was diagnosed--it seizes your heart. It squeezes your heart while simultaneously punching your stomach. It makes your last sip of coffee come racing back up your throat until you taste its bitter presence on the back of your tongue.

It makes your brain numb, so that you stutter over what you were just saying to your child while your eyes frantically evaluate him, noting the circles under his eyes, the pallor of his skin, and his general demeanor. Without having to look at the printout, you mentally review his last labs--his ANC, his hemoglobin, and, most importantly, his platelets. Platelets are often the first thing to fall in a relapse. The security of just being able to dismiss a pale child with a bruise as an active kiddo who may be fighting something is replaced with the fear that your child's cancer has returned. Oddly enough, the fact that your child is taking chemo every day does not hold any security--the fear of the cancer trumps the security of the chemo.

We are only a little less than halfway through our cancer "journey" (I hate that word, but I'll save it for another blog). I hope there comes a time where my mind doesn't automatically leap to cancer when my son is a bit off. I hope there comes a time when our family regains SOME semblance of security, even though I never expect a return to the innocence of Before Cancer. Most importantly, I hope there comes a time when a relapse can be treated effectively, when I can have the peace of mind of knowing that, if, God forbid, there is a relapse, there is an effective, non-toxic way to deal with it, and my son will have better than a 50/50 chance of survival. Until then, like so many other parents in our shoes, we live in the shadow of fear while turning our faces to the light that we have every day with our children.

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