Going Gold

I need to tell you something.  Lean in a little closer, please.  Forgive my language, but I fucking hate cancer.  I hate it. I hate that I have a reason to know that September is ‘Childhood Cancer Awareness’ month.

goinggold2
Cappy, the day we found out he was in remission.

I have held my son’s hand through things I wouldn’t dare explain here.  I’ve wiped vomit from his lips, dried tears, breathed with him through panic, I’ve cleaned feces from a hospital floor and spoon-fed him the world’s smallest bites of food, just so that he’d have something to eat.  I’ve signed on his behalf for treatment that, if his cancer stays away, will cause other side effects we don’t even know about yet…five, ten, or twenty years down the road.  I’ve called a couple of friends, declaring myself at the lowest point of my life, unsure of how I will walk back into his room and not weep by his bed.  I always walked back in…and most of the time, I didn’t weep by his bed.

I’ve made a careful point not to talk about Ky’s odds, the odds for his subset of leukemia and the things that make Ky’s particular version of it unique.  As awful as this sounds, I cannot be invested in how other kids have done.  I have one beautiful boy in front of me.  One beautiful boy who is battling.  Numbers don’t change his will, the way Bill, Lou and I love him.  They don’t change what we do or how we treat this.  Long-term survivor rates don’t account for the miracles that have already happened:  Ky’s leukemia was discovered very early, long before it had a stronghold on his bone marrow that is typically seen in kids with AML, Ky went into remission after one round of chemo and has remained there since, Ky had ten perfect matches, one of whom gave a liter and a half of his marrow so generously.  Percentages don’t account for his spirit, his determination, the way he loves and is loved, the medical team that we are blessed to have on our side.  Put simply, I’m not interested in someone doing a Google search and forgetting the mighty that is Kyan.

It’s easy for me to name what cancer has taken.  Too easy, I think.  I’ve worked really hard to try to show up in each day and see what cancer has given.  I hope you’ve seen that in my writing.  Sad as this all can feel, there is always, always hope or a blessing to be found.  Cancer has given me a whole new set of eyes to see, not just my son, but the world.  I have perspective that I will work to never lose.  I’ve had to find a courage in me over the last few months that, quite honestly, I had no idea was there.  I’ve chosen to find a voice.

The other night as Ky slept, I wondered if I could wave a wand and magically make the last several months not happen, would I?  My gut says – absolutely, give me the wand and I will hand over anything for that.  But then, would I ever have found my way to the appreciation I have for the moments between his breaths?  The last few months have taught me to live entire lifetimes between those breaths.  If life hadn’t been reduced to moments and complicated beyond belief last May, I don’t know what answers or wisdom I might have lived my way to.

But still, I hate cancer.  My reason for knowing it’s ‘Childhood Cancer Awareness’ month is five feet away from me, exhausted, but feeling a little better today.  He’s silly and bold and thoughtful and salty all at once.  He’s lived lifetimes in the past few months…and his future remains uncertain.

Childhood cancer research remains ridiculously underfunded; large pharmaceutical companies see childhood cancer research as not profitable and too risky, so they don’t invest.  Consider these statistics from Alex’s Lemonade Stand, a non-profit dedicated to childhood cancer research and support:  In the past 20 years, there have been three drugs approved to treat childhood cancer.  Three.  In 2012 alone, there were 23 new drugs for adult forms of cancer.  The lack of research means that the treatments available to children are more toxic than their adult counterparts and that means an eight times higher risk of future diseases and death.

I know everyone has a cause that they champion.  If you’ve been moved by Ky’s journey thus far, I would invite you to ‘go gold for childhood cancer’ too.  Wear a gold ribbon and if someone asks, tell them why you wear it.  If you want to donate money to a group or organization that has eased some of the financial or emotional burden for our family, I would gladly give you the names of specific places that have been wonderful resources for us.  We are blessed with good insurance, but there are silly realities, especially given the scope and goinggoldsequence of what we are dealing with (like paying for parking my car in downtown Boston) that add up really quickly.  We’ve been given some support with such things that all families in this situation get.  We will pay that forward when we are able to…and we can provide contact information for such organizations if you’d like to do the same.  If you can, do something kind for a child this month.  I don’t know if there’s a greater tip of the cap you could give my Cappy than that.

 

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One thought on “Going Gold

  1. Feeling for you all every step of the way.
    Kyan has been in my constant thoughts. I wish there was more I could do. I certainly have an understanding of how dark days change your perspective on what’s important. I do pray for better days for you all. Yes, that is bs how cancer research for kids is woefully underfunded. Take care my friends always.

    Like

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