Friends soothe a sore heart

(from Memphis with love . . .)

 

Being away from home is hard.  Cancer, sickness, endless hours in the hospital are hard.

But the darkness cannot encompass us with good friends who shine light and joy.

Sidney particularly bonded with Marco.  Marco finished treatments and went back home to Canada.  Before he left, Sidney and I took Marco and his mama to a Sonic.  Apparently, there are wild rumors in Canada about the awesome milkshakes of Sonics in America.  I don’t think our Canadian friends were disappointed.

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Sidney cozied up to this cutie today.  Sweet Camille has turned a corner and is clearly feeling better.  She was interested in Sidney Nintendo, so he showed her Animal Crossing, but she seemed to spend almost as much time . . .

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doing this — sweeping her eyes up to look at Sidney.  It was precious.

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Camille — a bright, happy moment in our day.

Redemption

ticktock

sounds like the End

or Redemption,

maybe they are the same thing

ticktock

I am the mouse running . . . nowhere

marking the calendar, scheduling bloodwork, MRIs, lumbar punctures, chemo,

crossing off these days

longing for The Day.

 

I have my Son here whom I cherish,

Together, we make a doctrine of our present, amputated life

with music and new friends.

We make happy in the moment

but sorrow nudges our periphery,

stretching to a hazy horizon,

a destination where I hope to find

the Father, another Son, a red-haired Daughter, a brown-eyed Daughter.

 

So far away

yet close

sorrow and hope entwined.

You are my bones, breath and blood.  I spill You from my pen

onto my little notebook

while I sit in waiting rooms.

I talk to You in the shower, driving to the store, taking out trash.

All my Words, spoken and written to You, for You, about You.

Perhaps I try to speak You into being

here with me.

 

Your Absence is as real to me

as the person standing beside me in this borrowed kitchen

while I stir the cabbage.

 

Perhaps I hear Your Absence louder

than Your Presence  —

I hope not.

I hope my ears hear

and my eyes see You

clear and subtle

when You share Your heart,

tell me Your story,

show me Your beetle,

play Your song.

 

ticktock

Did you know Time is elastic?

It stretched long these last months,

each moment anorexic without

You

and You

and You

and You.

I want to snap Time back to

our Together in a wooded Eden on the hill.

ticktock

Instead, I wait

ticktock

I wait for our Restored Home on the horizon

while I use my heart, hands and words to redeem now.

Living Life at the Ronald McDonald

Halloween — I was trying to blow a kiss to Sid, but I am discovering that selfies just make me look p-r-e-t-t-y foolish.  Oh well . . .

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Heading in for a thyroid biopsy last week  — Sidney’s latest game is seeing how long he can sing before the anesthesia knocks him out.  I recorded him.  The medical staff got a laugh out of it.

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At the movie theater — we had just watched Dr. Strange.

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Picking at the piano in the little chapel room at the Ronald McDonald House

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Teen Room at the Ronald McDonald — I’m too old to enter, so I had to take pictures through the glass door.

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On the playground this week

 

A son to his father

POSTED BY: Sidney the Third, in respsonse to A father to his son

 

As long as I have lived, there have always been three,

The great old father, his son, and then me.

And now that the father has moved along

we are apart,

You there, me here,

both a bit confused, both searching

 

I have learned from you what you learned from him,

My two greatest examples to follow – to become a greater man

To care for others over oneself,

To serve, rather than be served,

 

I have watched and learned practical skills –

Beware that innocent-looking capacitor,  or

Don’t bend the pipe too much, it will break

And make sure you weight your hay bales with children

So they don’t roll

 

You are a Protector – teaching, but sheltering

To make sure I did not fall too hard, too far,

Always ready to lift, to help,

To share the burden

To lift what I could not

 

You have prepared me for all that you could,

Yet we feel lost – who could have prepared for this?

What skills could you teach?

What weight could you lift?

 

I know the words you long to speak,

“It’s OK, son.  Don’t worry.  I’ve got this one.”

But you cannot.

 

I have the shovel, and you cannot reach it,

But its OK, Dad.  Don’t worry.  I’ve got this one.

Your part in this battle is done.

 

I can wield the shovel because you showed me how,

You made me work,

Made my hands and arms strong.

 

I can lift this weight that you cannot,

And climb this mountain that you must go around.

But only because of you.

 

You have done your job.

 

I am ready.  I can do it.

 

I love you, Dad.

Stay calm and breathe deeply

POSTED BY SID

From Memphis with love,

20161007_175853
A nurse in ICU made this sign and placed it by Sidney’s door.

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20161008_114139
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Pleuropulmonaryblastoma-  also known as PPB, it is the first documented case at st. Jude.  It is so rare, they’re sending the sample to minnesota, where the worldwide registry is located.  There are about 30 cases documented there.  They’ve only been collecting records there for about 10 years or so.  The Doctors at st. Jude are pretty sure this is PPB,  but since they’ve never seen it before except in textbooks, they’re sending it off to people who have seen it before.
Regarding treatment of PPB,  what was removed was definitely Type 1.  It is considered cancerous, but only because of its ability to advance into Type 2 or Type 3, which are angrier versions of the same thing.  Typical treatment is to remove the PPB only, with no chemo or radiation to follow.  Since it has been removed, and we have chemo scheduled anyway, the doctors find it likely we will never hear from that tumor again.  It is also extremely rare that PPB forms in anyone over 6 years old.  Also, remember that Sidney will be periodically scanned for the rest of his life anyway, as a cancer survivor.
Sidney is recovering well beyond expectations.   He is approved to leave icu, as soon as a room is open.  Hopefully that will happen today.
Chemo is scheduled to begin Thursday,  10/13/16.
In summary,  this has been an uncomfortable 2-week setback.  We will be back on schedule Thursday,  with a new (and in my opinion his most impressive) scar.  They weren’t kidding when they said it would be a large incision.
Thanks to all.

Puzzling in Pre-Op – UPDATE

UPDATE

Sidney is out of surgery.  It went as well as the surgeon had hoped.  He only had to take about 25% of the bottom lobe of Sidney’s left lung.

A visual of the cysts is encouraging.  It does not look like an aggressive cancer.  We hope it is not cancer at all.  Pathology will give us the final answer.

Let’s pray for a speedy and comfortable recovery.  Sidney needs to be up and walking tomorrow.  Hopefully he will be ready for chemo in a week.  Putting off chemo is a gamble.

 

20161006_064655

Whiplash Days

from Memphis, with love . . .

So last week should have been the start of Sidney’s chemo, but careful screening revealed two cysts on his left lung.  As new and more detailed information and various medical opinions came in by the hour, we were left tired and confused and very hungry.  Some rest and a steak lifted Sidney’s spirits considerably.

After all the experts weighed in, we decided to postpone chemotherapy in favor of removing the cysts and sending them off for pathology.  He gets a week or so to recover from that major surgery and then chemo.

Surgery is tomorrow morning (Thursday) at 6:30.
This type of surgery could be done with the lightly invasive technique,  with small sticks and vacuum.  But with Sidney’s cancer status, they’ll be doing it the “hands-on” way, which means a large incision, so they can get in there, cut things out, and take a look around so they can make sure to leave nothing behind.
I appreciate the reason for this, and I agree with it.  But I personally struggle with all this cutting of my son.  Obviously,  we want the surgery to be successful, but please pray for smooth recovery also.
Thank you for your prayers.