Y’all, I’m ready to get this kid home

Sidney had a busy day yesterday.  St. Jude often has something fun going on.  It helps patients pass the time when there are long minutes and hours between appointments.  We all know my son is not shy and doesn’t particularly worry about looking uncool or being dorky.

He had never done karaoke before, so he didn’t know the words were on the screen 3 feet in front of him.  He sang from memory.

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It is amazing how much more balance he has now, though you can tell it is still challenging for him to squat low and maintain balance.  Clearly, his energy levels have increased.

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The little girl in the wheelchair is Abby.  She is 11 yo, right between my 12 yo Rachel and 10 yo Prairie.  Sidney hangs out a lot with Abby, eating meals, playing card games and gets his little sister fix.  Ha — I just discovered something that irritates my easy-going Sidney —  himself singing off-key.  He is thankful he realized and corrected it.  By this time, he knew the screen had the words, so you can see him squinting and closing one eye, trying to read the screen.  His vision has improved a lot, but he often wears the the eye-patch for reading and convincing small kids that he is a pirate.

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Coolest kid on the block

He’s got the coolest head covering.

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No one doubts the shirt.

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He’s got the moves like  . . . Sidney ?  I don’t know anyone else who would dare those moves.

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He’s got the attitude.

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And with titanium plates and screws in his head and gadolinium in his pocket, he is fairly certain he defines “cool.”

“What does a cooking brain smell like?”

Posted by Sidney III from Memphis, with love . . 

That is the question that Mrs. Patton asked me – a legitimate question, to be sure.  But before I answer that question we need a little context.

I started radiation treatments a couple of weeks ago.  It takes about 15 minutes every weekday, in a room with a machine that looks like an X-ray machine.  It looks like that because it is.

The machine that treats me also takes x-ray images of my skull and spine once a week.  These images are used to make sure the powerful, damaging radiation goes to the right spots and doesn’t cause damage to more of my body than necessary.

X-ray machines shoot a type of electromagnetic radiation, called x-rays, through the patient.  These x-rays pass right through flesh and organs but are blocked by bones.  By measuring the radiation that comes out the other side of the patient, the machine creates a detailed image of one’s bones.

This same type of x-ray radiation is used to kill cancer cells.  The difference is, that in order to kill cancer, the radiation must be more powerful, so powerful it breaks apart the strands of DNA in my cells.

That sounds bad.  Without DNA, cells are unable to replicate themselves, and they die.  But the human body excels at healing itself, so the healthy cells in my body repair their DNA and keep going, doing all the things that cells do.

But cancer cells are mutations.  Their DNA is already damaged, and they are unable to repair the additional damage caused by radiation.  Thus, the cancer cells die.  The healthy cells heal.

“Ok, we get it, now what does a cooking brain smell like?”  I hear you say.  Ok, here we go:

Normal x-ray images use the lowest dose of radiation possible.  These doses are painless and don’t cause significant cellular damage.  I wasn’t expecting to see, feel, or smell anything when I went in for my first treatment.

However, I saw a bright blue light, and smelled a mixture of Clorox, pennies, and electricity.

Upon being unbound from the table and exiting the radiation room with concrete walls, six feet thick and a 12 inch thick steel door, I commented on the lights and smell to the radiation technician, who looks confused and says, “What light?  What smell?”

Actually, neither the light nor the smell are real.  I see the light and smell the pungent odor of baking brain because radiation hits my optic and olfactory nerves, stimulating false messages to my brain.

So while my cooking brain may not emit odors from inside it’s cocoon of spinal fluid and bone, I do smell something foul.

Interestingly, not all patients experience the smell and light.  It depends on the dosage, the area being radiated, and the person.

That’s what’s happening here in Memphis!  I may post again if I find Elvis’s secret bunker at Graceland. (We all know he’s not dead, just hiding somewhere.  Don’t buy the lies fed to us by the Illuminati!)

Thank you everyone for your support on this journey!

Sidney

The Extrovert and the Not (aka Mama)

From Memphis with Love . . .

Once upon a time, there was a boy with brain cancer and his introvert mom.

The son and mom flew far away from home to a special hospital for treatment.  They met many people, who were kind and helpful, which excited the boy but stretched the mom a bit thin.

They talked to surgeons, brain cancer specialists, radiologists, eye doctors, social workers, researchers, chaplains, therapists, psychologists.  In the beginning, the specialists entered the room to talk to the mother about her son.  But the boy initiated introductions and power hand shakes.  He asked questions, cracked jokes, then asked more specific questions about cancer cells, MRIs, and proton beam radiation.  He asked tough questions and made some people think hard.  Eventually, the specialists forgot the mom’s presence and only chatted with the son.  Until she was needed to sign papers.

The mother and son spent a lot of time in waiting rooms.  The mom usually spoke a few words to her son or read a book.  But her son preferred chatting.  This special hospital was a busy place and he was never disappointed.

He told the shy teenage girl, “Excuse me, I hope I am not overstepping by saying this . . .but your prosthetic leg is sooooo cool!”  The girl smiled bashfully and ducked her head, but her proud mama beamed and shared with the boy their whole story — how her daughter’s cancer and prosthetic didn’t slow her down, how she maintained her 4.0 GPA and went hunting, taking down an 8-point buck.

The boy passed another girl, her face bloated from steroids, “That hummingbird you drew in art today was amazing!”  The girl beamed and detailed her plans to embellish it.

He danced the macarena for the serious pharmacist who had to work evening shift on the 4th July to make her smile.  She didn’t understand the boy’s humor and his mama dragged him away to spare the woman more confusion.  He was undeterred.

He met a little girl wearing a Disney’s Little Mermaid dress.  So he sang a song from the movie to entertain her.  In the waiting room full of people.

There you see her
Sitting there across the way
She don’t got a lot to say
But there’s something about her . .
Shalalalala
My oh my
Looks like the boy’s too shy
Ain’t gonna kiss the girl
Shalalalala
Ain’t that sad
It’s such a shame, too bad
You’re gonna miss the girl
The little girl ignored the boy.  The boy’s mama pretended to read her book while sneaking peeks to gauge reactions.  Some people looked at him with questioning eyes, “Is there something wrong with this boy?  Doesn’t he know normal people don’t burst into song in public?  Did his cancer mentally affect him?”
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Others glanced eyes away, unsure whether to smile or not.  Possibly afraid to make eye contact and engage him.
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Undeterred, the boy switched to a different song.
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The seaweed is always greener
In somebody else’s lake
You dream about going up there
But that is a big mistake
Just look at the world around you
Right here on the ocean floor
Such wonderful things surround you
What more is you looking for?
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Finally, the little girl smiled and her baby doll danced.  The little girl’s mama laughed, delighted by her daughter’s smile.
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When the therapist called the boy back, he theatrically pretended to open the automatic door with magic power flowing from his fingers.  After he left, the other adults felt safe to grin.  “Well, he has a good attitude,” they consoled his mama.
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The boy’s mother smiled and was pulled into conversation with strangers.  It was not so bad.

In the cafeteria, the boy heard The Pointer Sisters sing “Jump for my love” and could not resist the temptation to groove.  The cafeteria lady laughed, gave him a fist bump and told him he had moves.

The cafeteria guy avoided eye contact.  The mom asked for the salmon and asparagus.

Everywhere they went, the boy learned names and stories, made someone laugh, or at the very least, perplexed a person.

And while the boy’s mom heard hard things about short-term side effects and long-term side effects and future treatments and missed her husband and children at home, she was undeterred.

She was mostly content to be a lump on a log beside her son.

Listening to him.  Watching him.  Watching other people respond to him.  Or not.

She was entertained.

Crudity

From Memphis with Love . . .

 

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Crude is the word, is the word, is the word

“It’s got groove, it’s got meaning.”

Last night, we sat side by side

eating dried mango slices

watching John Travolta dance

in that way only he can.

I have waited for the day

when you would be old enough

to test,

wondering if you would get it,

if you would see the world the way I do.

If you would walk that subtle line

where crudity would sometimes make you laugh

because laughing at our flaws lightens

the burden, strengthens us to be better people.

And other times, if crudity would disappoint you,

even as you tried to understand it and let it point you

towards a better way.

As we watched the story unfold,

I listened to your laugh, heard your critiques

and watched you parse the beauty and

ugliness,

your recognition of Heaven and smut bound in our DNA.