Ten Candles for Sean

Sean at around 5:00 pm June 30, 1997

When the doctors found out I was carrying Sean (I knew, I didn't need a test to tell me), they went into a bit of a tizzy.

I'd had four miscarriages, and then there was Steven, who was born with a cleft palate, malformed ears, no hearing on the right side, a mild form of spina bifida, his stomach was upside down, and too many other things to mention here.

I didn't have amniocentesis with Steven. I decided that I wouldn't even consider it unless the other prenatal tests they do came up positive, and they didn't, everything was better than normal for my age.

In retrospect, I feel even more strongly now than before that even if they'd been able to peer into my womb and tell me everything about Steven's medical condition, and even if they could have told me that he'd develop a malignant brain tumor when he was 9, I wouldn't want to have known. The picture I would have painted in my mind would have been far worse than the reality.

So here was Sean, growing inside me. I had an entire different feeling with Sean, like I knew he would be fine, the entire pregnancy was different than it was with Steven.

His birth was relatively easy. He was a big baby, I said 9 lbs or more, the doctor said 8 lbs as she felt him during my labor, Sean was 9 lbs 9 ox. Big and healthy, and he came out hungry.

I lay on the table where I'd birthed him and held his slippery warm body against me. It is always so weird when you look at the face of the creature that's been growing inside you for the first time, Steven and Sean never looked like I imagined they would.

He was born hungry, he started shoving his fists in his mouth and turning his head back and forth the way newborns do when it's time to eat. I didn't have any milk yet, and I was slimy myself and ready for a shower, so I called the nurses to get him so I could take a shower.

Afterward I got him from the nursery and brought him to our private room. I stood and held him and Doug and I talked and he turned his head back and forth in response to our voices. I looked at him and I told Doug I could tell he was going to be healthy and smart and advanced for his age.

At around midnight we wanted to sleep, so I sent him back to the nursery and Doug and I got in bed. Half an hour later the nurse came back with him and said, "He's hungry". I said, "You're a nurse, you know I don't have milk yet, I can't do anything for him, and for tonight I want to sleep." She asked me what to do and I told her, "Feed him, he's hungry".

So she did. We supplemented with formula for two days while I waited for my milk, the La Leche folks who kept telling me he wasn't really hungry, that newborns don't need to eat for four days didn't have a clue.

When my milk came in, he nursed. He ate so well, he was gaining 2 ounces per day. When I took him for his 6-month visit, he weighed 20 lbs. 3 oz, more than Steven weighed at a year. He was roly poly and had dimples all over his fat little body.

He only gained 7 oz over the next 6 months, at a year he ws 20 lbs 10 oz, a more normal size.

My predictions came true. He's healthy, smart, athletic, brave and strong. I worry all the time that I focus so much on Steven and his health issues that I don't give him proper attention, that I won't notice something I should. I have had more than one dream that something terrible happens with him and I've been too distracted to notice.

At least for me, guilt is part of parenting no matter what I do.

Sean with our puppy Buddy (r) and his brother Jack (l)

Happy 10th birthday, sweetie. I am so very proud of you.

- Kathleen

A Very Belated Ride For Kids

Steven with Regina and Jordan in the back

Every year, the Pediatric Brain Tumor Foundation hosts the Ride for Kids, a nationwide fundraiser whose purpose is to raise funds for pediatric brain tumor research.

Steven and Regina

Motorcycle riders raise money, then they come to one of the rides, where they take brain tumor kids and their families on the backs of the bikes or in sidecars. This ride took place last October.

Steven and Jordan

The money they raise also goes to college scholarships for brain tumor patients, and every year there are several college scholarship recipients at the event.

Jordan loves Steven

This year we invited Diana to bring Regina and her little brother Gabriel to come down for the ride.

Bandit, the motorcycle-riding dog

One of the riders had a remote control motorcycle that would drive around with his dog sittin on the seat.

Sean in the sidecar

Adults and the bigger kids usually ride on the back of someone's bike, the little kids ride in sidecars.

Jordan's little brother Ben

At the end of the hour-long ride, we got back and no Steven. We made inquiries, many calls were made, and we determined that the bike with Steven had mechanical problems early in the ride.

Doug drove out and got him, he'd been waiting for an hour accompanied by his rider and everything was fine.

Regina being interviewed

After the ride they served lunch and announced how much money each rider raised. Next the kids went on stage. Regina was shy, but it was her first time.

Diana holding Regina, Jordan being interviewed and Steven waiting his turn

At last year's Ride for Kids, Jordan wouldn't say a word, but this year she was the star of the show.

Steven being interviewed

Steven is usually very shy also in front of a microphone, but he did well this year.

Presenting the check (I like the way Regina is barely touching the check)

They raised over $60,000. We had fun, and it's for a good cause.

- Kathleen

Our Friend Regina

Steven and Regina in Memphis, November 2004

Regina is the little girl that lives near us in California that we met the week we got back from Memphis at the end of Steven's treatment in 2004. She has the same kind of tumor as Steven and a friend of mine put me in contact with her family to offer support.

Regina did the same exact same treatment at St. Jude that Steven did, same doctor, same everything. She was four when she was diagnosed in May 2004, she celebrated her fifth birthday in the hospital as she was starting chemo. She finished treatment in January 2005, and like Steven, she's done very well since.

Regina celebrated her sixth birthday at Chili's for their St. Jude fundraiser

Her last visit to St. Jude was in January, her scans were clean and she "graduated" to six-month followup visits just like Steven. She finished first grade the same week that Steven graduated.

Last Thursday after a bout of vomiting, her mother took her to the emergency room and they did a CT scan which revealed massive swelling in her brain. She had surgery on Friday where they removed the largest of what seems to be in excess of thirty tumors.

Regina and Sleeping Beauty

Regina is in the hospital right now recovering from her surgery. I went to visit her yesterday.

Sleeping Beauty paid Regina a visit at the hospital while I was there, I guess even the Disney princesses heard she might need some cheering up.

Nick, Gabriel, Diana and Regina with Sleeping Beauty

Barring a miracle, there is nothing to do at this point except to make her comfortable..

Regina's family are good friends. We are broken over this.

Nobody saw this coming.

- Kathleen

Oh, The Places You'll Go!

Steven with his certificate of promotion.

Congratulations!
Today is your day.
You're off to Great Places!
You're off and away!

You have brains in your head.
You have feet in your shoes
You can steer yourself
Any direction you choose.

You're on your own. And you know what you know.
And YOU are the guy who'll decide where to go.

You'll look up and down streets. Look 'em over with care.
About some you will say, "I don't choose to go there."
With your head full of brains and your shoes full of feet,
You're too smart to go down any not-so-good street.

And you may not find any
You'll want to go down.
In that case, of course,
You'll head straight out of town.

It's opener there
In the wide open air.
Out there things can happen
And frequently do
To people as brainy
And footsy as you.

And when things start to happen,
Don't worry. Don't stew.
Just go right along.
You'll start happening too.

OH!
THE PLACES YOU'LL GO!

You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
Who soar to high heights.

Steven's last day of school, the kids went around the room and shared what was most memorable about sixth grade.

You won't lag behind, because you'll have the speed.
You'll pass the whole gang and you'll soon take the lead.
Wherever you fly, you'll be the best of the best.
Wherever you go, you will top all the rest.

Except when you don't
Because, sometimes, you won't.
I'm sorry to say so
But, sadly, it's true
And Hang-ups
Can happen to you.

You can get all hung up
In a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.

You'll come down from the Lurch
With an unpleasant bump.
And the chances are, then,
That you'll be in a Slump.

And when you're in a Slump,
You're not in for much fun.
Un-slumping yourself
Is not easily done.

You will come to a place
Where the streets are not marked.
Some windows are lighted.
But mostly they're darked.
A place you could sprain
Both your elbow and chin!
Do you dare to stay out?
Do you dare to go in?
How much can you lose?
How much can you win?

Filing in for the ceremony

And IF you go in,
Should you turn left or right...
Or right-and-three-quarters?
Or, maybe, not quite?
Or go around back
And sneak in from behind?
Simple it's not,
I'm afraid you will find,
For a mind-maker-upper to make up his mind.

You can get so confused
That you'll start in to race
Down long wiggled roads
At a break-necking pace
And grind on for miles
Across weirdish wild space,
Headed, I fear, toward a most useless place.

The Waiting Place...
...for people just waiting.

Waiting for a train to go
Or a bus to come, or a plane to go
Or the mail to come, or the rain to go
Or the phone to ring, or the snow to snow
Or waiting around for a Yes or a No
Or waiting for their hair to grow.

Everyone is just waiting.

Waiting for the fish to bite
Or waiting for wind to fly a kite
Or waiting around for Friday night
Or waiting, perhaps, for Uncle Jake
Or a pot to boil, or a Better Break
Or a string of pearls, or a pair of pants
Or a wig with curls, or Another Chance.

Everyone is just waiting.

NO!
That's not for you!

Somehow you'll escape
All that waiting and staying.
You'll find the bright places
Where Boom Bands are playing.

After the promotion

With banner flip-flapping,
Once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of a guy!

Oh, the places you'll go!
There is fun to be done!
There are points to be scored.
There are games to be won.
And the magical things
You can do with that ball
Will make you the winning-est
Winner of all.
Fame! You'll be famous
As famous can be,
With the whole wide world watching
You win on TV.

Except when they don't.
Because, sometimes, they won't.

Steven with his sixth grade homeroom teachers

I'm afraid that sometimes
You'll play lonely games too.
Games you can't win
'Cause you'll play against you.

All Alone! Whether
You like it or not,
Alone will be something
You'll be quite a lot.

And when you're alone,
There's a very good chance
You'll meet things that scare you
Right out of your pants.
There are some, down the road
Between hither and yon,
That can scare you so much
You won't want to go on.

Filing out of the ceremony

But on you will go
Though the weather be foul
On you will go
Though your enemies prowl
On you will go
Though the Hakken-Kraks howl
Onward up many
A frightening creek,
Though your arms may get sore
And your sneakers may leak.

On and on you will hike
And I know you'll hike far
And face up to your problems
Whatever they are.

You'll get mixed up, of course,
As you already know.
You'll get mixed up
With many strange birds as you go.

So be sure when you step.
Step with care and great tact
And remember that Life's
A Great Balancing Act.
Just never forget
To be dexterous and deft. And never mix up
Your right foot with your left.

And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

Steven with my parents

KID, YOU'LL MOVE MOUNTAINS!

So...
Be your name Buxbaum or Bixby or Bray
Or Mordecai Ali Van Allen O'Shea,
You're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!

- Dr. Seuss

---

Steven finished elementary school on Thursday June 14. There was a promotion ceremony for all the sixth graders.

I don't have his report card, but he tested into Honors English and Honors Pre Algebra. I can barely put into words how terribly proud we are of him.

Honestly I can say that I never took for granted that we would get to this day. I remember driving home from Memphis at the end of his treatment and worrying about his return to school.

That fourth grade year when he was trying to get back into the swing of things after radiation, four stem cell transplants and missing a year of school was horrendous. More than once I questioned, given his uncertain future, whether the effort of keeping him in school was worth it.

We are not given foresight, only hindsight, and in hindsight I feel we did right by him with respect to school.

In late August he moves on to middle school. The middle school he will be attending is for 7th and 8th grade only, there are 1500 students. His elementary school is approximately 700 students. Every time I go to over to that school I worry, I feel like it's a big mouth just waiting to swallow him up. I've heard stories about the teasing and bullying that goes on there with some of the kids and I worry that he'll most definitely be a target.

When I think of him heading off to middle school, I feel like it says in the poem:

You will come to a place
where the streets are not marked.
Some windows are lighted.
But mostly they're darked.
A place you could sprain
both your elbow and chin!
Do you dare to stay out?
Do you dare to go in?
How much can you lose?
How much can you win?

But nothing ventured, nothing gained.

Steven, we love you. You go.

- Kathleen

Rayley Our Angel

Rayley Rose Kocurek
May 23, 2006 to June 9, 2007

There is a Reaper, whose name is Death,
And, with his sickle keen,
He reaps the bearded grain at a breath,
And the flowers that grow between.

"Shall I have naught that is fair?" Saith he;
"Having naught but the bearded grain?
Though the breath of these flowers is sweet to me,
I will give them all back again,"

He gazed at the flowers with tearful eye,
He kissed their drooping leaves;
It was for the Lord of Paradise,
He bound them in his sheaves.

"My Lord has need of these flowerets gay,"
The Reaper said, and smiled:
"Dear tokens of the earth are they,
Where he was once a child."

"They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear."

And the mother gave, in tears and pain,
The flowers she most did love:
She knew she should find them all again
In the fields of light above.

O, not in cruelty, not in wrath,
The Reaper came that day;
'Twas an angel visited the green earth,
And took the flowers away.

Our sweet little friend Rayley went to heaven Saturday afternoon at 1:14 pm.

You can light a candle for her here.

- Kathleen