Saturday, November 3, 2012

Children with NB Cancer and... SWAG?: Research

What does one do with time in the middle of the night?
Whilst on prednisone?

Research, people. Research what? Cancer. Drugs. And what does the prednisone brain try to do with this information? Come up with a cure.

It began with a song. Taylor Swift wrote one called: Ronan. In honor of a blue-eyed boy whose heartbreaking face succumbed to a very deadly cance called Nueroblastoma.

First off, I had to find out what, why, how and when. I was googling like mad to find out what the deal was with this type of cancer. Finally, I surmised that it was so stealthy that by the time the Dr.s could diagnose it, you were in stage IV.

Then there were the meds, the trial meds. The toxicity. I was reading blogs about the kids, yes getting teary eyed but looking at meds and treatments. (Don't ask. I will only answer: Prednisone.) Unlike my meds, that could qualify as names for new countries, these ones sounded like the progenitors, or offspring, of C3PO.

The charting of similar ages, symtoms and such in my brain was taxing. So I changed course. Let the Dr.s, scientists, blah blah bloohahs figure that out. That's what they get paid for, right?

Shifting from Hero of Answers I went into lover of biograhpies, except these ones were of kids who suffered with NB. I started with Ronan. Then, through a link that is called Caring Bridge and lists of kids on the sites of these parents', I found more bios.

Pretty soon I couldn't wait to get online, work through my own pain, and read about some incredible little people.

But then I had a prednisone moment..... I started to google: "children with...." and google started to give me options that they figured I would want to check out. One, was: "Children with Swag."


Of course I clicked it. There was a list of option and even pictures of "children with swag".
The one I clicked?

"50 pictures of kids cooler than you."

Yes, google deviated me from my wholesome reading into the land of children who dress with SWAG. You will need an urban dictionary for this one. Essentially they not only dress like fashion models, but also possess the essence of swagness by their confidence and coolness exubed.

Initially, I was wishing I owned a pair of boots or shoes, that jacket that these little mini-me models were wearing when suddenly, I thought back to 'my' NB project. I wanted to to load up every picture of all the lost little kids over the top of the kid models.

Not one outfit from one of the little NB kids could come to my mind, but you could bet that their personalities loomed and carried more impact than a pair of exspensive shoes from Milan.

Please don't get me wrong. I loved to see my son in cute clothes, dressed up in such a way that you'd want to hang him from the rear view mirror- but after reading about the struggles, the cost, the LIVES of the kids lost then frost all of that with what is happening back east- The Kids Who Were Cooler than me made my stomache sorta turn.

So, I used my self control and went back to my reading of uplifting and inspiring work. I met back up with Max. Super cool kid whose pic with Tony Hawk is super swag.

Imagining Brent's mom cuddling up with her Teddy Bear of a boy on the couch while taking in a Sunday Football game helped me enfold the 5 dimples on my boy's face with kisses in the middle of the night.

Tears shed with Liam's Dad as he drove through the city in a Taxi and poured his heart out to his son, asking for forgiveness for not "saving him".

And then, and THEN, I met Erin. Thanks Max's Dad. Erin's life was longer than most that were diagnosed with NB. And her mother, Vickie, chronicled her life, the meds and procedures in a way that I could really learn about NB and fall in love with this live wire, Erin Buenger.


I really didn't care if my shoes were from Milan. Or that I am starting to resemble the kids from Gary Larsen's Far Side cartoons. (See the one with the boy running around a table in his socks, being chased by two wolves.  Due to prednisone.)

And then....prednisone pulled another trick and folded back the years, opened files, and threw one picture that I would hope to never think of again. Prednisone and Children with "Swag" made me think of  about one last child that has haunted me since seeing it in a friend's room during my college days- A pulitzer prize winning photo. Of a child in the Sudan, naked and bent over; crouched to the dirt. Famine having eaten away every last ounce of anything on her....

As if that wasn't enough;

A vulture hovering nearby.

Prednisone. I hate you.

But thanks to you, I will keep researching. And I will take out vultures and I will save someone.

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