"If you lose, it doesn’t matter because you still tried."
August 7, 2014 7:49 AM   Subscribe

"There's something different about being told you’re dying when you’re 10 years old: You’re not a grown-up, but you’ve thought about what you’ll be like when you’re 30, when you’re old. You’re not a baby anymore — you know what cancer is. People start feeding you pills and poking you with needles. You make a bucket list your mother worries she won’t be able to help you complete. You want to get your ear pierced, but you can’t risk the infection. You know what sex is, but you’re told you’re not ready. You want to try new things, but you need permission first. You never lose hope for a miracle, because you’re still a kid, and kids aren’t supposed to die." Ethan Alexander Arbelo-Maldonado: Little Man and the Pursuit of Happiness

This is a 'special report' from The Naples Daily News (in Florida) profiling Ethan Arbelo, who was diagnosed at age 10 (in March, 2012) with inoperable, terminal Anaplastic Astrocytoma Grade III cancer. He died on July 3, 2014.

Before he passed, his mother helped him complete a bucket list. Ethan was also given a camera to document his own life shortly after he was diagnosed.

* Part 1 - Life with Little Man: Diagnosis that led to a prayer, a list and a moonlit kiss for Ethan
* Part 2 - Life with Little Man: As they said he was dying, Ethan Arbelo wasn't done living
* Part 3 - Life with Little Man: Accepting his 'order,' a Marine returns home
* Life with Little Man: Cancer charities and groups (A list of cancer charities and groups that helped Maria Maldonado and her son, Ethan Arbelo.)
posted by zarq (19 comments total) 18 users marked this as a favorite
Mentioning this because it might take some folks by surprise and a handful of comments on the article were upset over it: The first section opens with a discussion of an item on Ethan's bucket list: he wanted to go to a strip club. There's also a some cursing in this article. Something you may not expect to find in a daily newspaper.
posted by zarq at 7:53 AM on August 7, 2014

This is the most realistic account of a family member dying of cancer I've ever read. It's not just about people sitting around the deathbed holding hands; it's about strip clubs, and ex-spouses fighting, and driving assault vehicles. It's real. Thanks for this post.
posted by Melismata at 8:33 AM on August 7, 2014 [6 favorites]

Amazing account. His mother's incredible attitude of allowing Ethan to make decisions about whether he wanted to be comfortable or to keep fighting...to remember that he's a boy becoming a man, who has complicated feelings about sexuality...the fact that she understood that she was losing patience and kept fighting. And he seemed wise beyond his age about what he wanted to do and try. It's all just a horrible thing to have happened, but you can see all the sides of being in such a terrible situation.
posted by xingcat at 8:41 AM on August 7, 2014

“God makes miracles,” Ethan insisted."

Fuck you, God.
posted by xarnop at 9:01 AM on August 7, 2014 [10 favorites]

Fuck all gods!

This is one of those pieces that I really want to read, even though I know it'll take me an entire day to do so. Read a paragraph, flip away and do other stuff until I've recovered, read a paragraph, do other stuff until I've recovered....
posted by You Can't Tip a Buick at 9:06 AM on August 7, 2014 [2 favorites]

I have a 10-year old and just the excerpt from this article made me go hug him until he made me stop.

No way can I read the whole thing.
posted by dotgirl at 9:28 AM on August 7, 2014 [2 favorites]

It's real.

*nod* The piece was very honest. It didn't make Ethan or his mom out to be saints. Being a caregiver of someone who is terminally ill can be incredibly difficult. I especially appreciated the honest portrayal of his father.

Watching your own child revert and be slowly taken from you must be absolutely heartbreaking. Excruciating.
posted by zarq at 9:44 AM on August 7, 2014 [2 favorites]

My god, that's one of the most devastating things I've ever read. I am going to hug my babies so tight tonight. Having your family be healthy is such a huge blessing, and so easy to take for granted.
posted by jbickers at 10:01 AM on August 7, 2014

I was totally fine until that photo of Ethan in the Marine helmet.
posted by mochapickle at 10:22 AM on August 7, 2014

This is not something I would have ever expected to see come from my hometown (okay, one city over, but close enough) super-conservative local newspaper. But hey, there it is! And geez, is it a punch to the gut. I loved the bit near the end where she was reading Fault in Our Stars... and by loved it, I mean, I'm blaming my sniffles on the head cold I'm still getting over. Absolutely.

However, I am from Lehigh, where Ethan lived, and I'm definitely not surprised by the friendly local bikers. Not one bit. My sister-in-law works at the Harley dealership nearby, and they're some of the nicest, most charitable people around.
posted by PearlRose at 11:00 AM on August 7, 2014 [2 favorites]

(I just realized my comment sounded terse. I meant that even so young, he didn't look so different from the young men from the local military base and who he wanted be had things gone normally for him. It just crushed me.)
posted by mochapickle at 11:13 AM on August 7, 2014

posted by procrastination at 4:35 PM on August 7, 2014

posted by sarcasticah at 5:03 PM on August 7, 2014

I can confirm, through watching a good friend, and a brother-in-law both lose children under 10 to paediatric cancers, there isn't much shittier that can happen. For parents, such a load. For all of us, the heartbreak.

This is a good newspaper series.

I thought I was going to absolutely lose my shit at the oddest time, watching 9 year old boys from a prep school during a memorial service in a chapel, singing "Living On A Prayer" because that became their friend's song. Watching their faces being brave finally broke me right down.

Just going to leave this here.....

posted by C.A.S. at 9:18 PM on August 7, 2014

posted by TrinsicWS at 9:20 PM on August 7, 2014

Thanks for posting that, zarq. The video that Naples Daily News put out in conjunction with the series is worth watching, too.
posted by thursdaystoo at 5:36 AM on August 8, 2014

Poverty an lower rates of surviving cancer in children.

Childhood adversity and cancer risk increasing.

Childhood cancer and exposures of parents in their occupations.

Psychological stress and adversity in childhood and the beginnings of disease processes.

There is a lot we don't know about cancer, but for obvious reasons we do need to address poverty and instability in families, and putting forth tighter controls on psychological stress and chemicals workers are exposed to (including cleaners and maintenance workers who are often not allowed to prefer to avoid fumes). In general if we know that there are toxic ingredients in our skin care products, hair care products, in our foods, in our air, in our homes-- the argument is that each on these exposures alone is so small as to not be a problem but the result is this that our environments are saturated with these types of exposures on a daily basis, combined with the impact of various other psychological and physical stress related difficulties the body may be coping with will present various amounts of increased damage to exposures. I'm not suggesting that cancer is a result of modernization but that harmful environmental factors existed prior to modernization and there is still plenty for us to understand about this other than "huh genetics random".

The thing is this: "Rates of childhood cancer have increased by 0.6% per year between 1975 to 2002 in the United States[9] and by 1.1% per year between 1978 and 1997 in Europe." --is indicative about unhealthy factors that we need to understand better across generations of exposures.
posted by xarnop at 7:52 AM on August 8, 2014 [1 favorite]

Thank you science for saving most of us from this. We lost our adult son and I often reflect how fortunate we are to have our other children, when in the past so many died.

. .
posted by anadem at 8:43 AM on August 8, 2014 [1 favorite]

So disturbing and overly sad.
posted by Artemaximus at 5:17 AM on August 9, 2014

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