D.C. Day 2: Some American History

FDR's cane and leg braces

Saturday April 30 was a gray and rainy day, so we decided to spend the day inside at another Smithsonian museum, the National Museum of American History. There was a new exhibit in honor of the 50th anniversary of the discovery of the polio vaccine.

There was a great exhibit on our past presidents and the hat that Lincoln was wearing at Ford Theatre on the night he was assassinated was on display.

The Star Spangled Banner is on display, the flag that was flying at Fort McHenry in 1814 that inspired Francis Scott Key to write our national anthem. There is a big project to preserve and restore the flag.

We decided to walk from the Smithsonian around the Tidal Basin to go see the Jefferson Monument.

Despite his claims that he couldn't walk that far and that his legs were going to fall off, Sean was able to make it all the way to the monument.

We had grand illusions of walking all the way around the Tidal Basin and visiting the Lincoln Monument, but Sean wouldn't let us, so we called it a day.

To be continued...

- Kathleen

D.C. Day 1: Taxation Without Representation

At least, that's what all the license plates say...

We landed in D.C. early, before noon. Since 9-11, everybody flying into D.C has to remain in their seats for the last half hour before the plane crosses into the District of Columbia limits, the pilot and flight attendants threatening to divert the plane to another airport if someone got up to go to the bathroom during the last part of the flight.

Thank God we all had comfortable walking shoes, because we did the D.C. portion of our trip sans automobile, and walking was what this trip was all about. We checked into our hotel, then immediately set out walking.

Our first stop was the White House. Just as we arrived there it started to rain, but despite the fact that we had only one umbrella for the four of us and no waterproof jackets (next time we'll be smarter and bring our parkas), we kept on going.

We decided that we should probably save all our visits to the monuments for a day with better weather, and set off to the D.C. Visitor's Bureau for some maps and some clue of how to go places without a car.

With maps in hand, we found our way to the Smithsonian Museums, where we decided to visit the Hirschhorn Museum of Modern Art. We've never taken our kids to a modern art museum before.

All of us liked this brick guy, called the "Kiln Man".

Lots of the stuff was beyond weird and Doug kept commenting that he could make stuff like this. Sean liked the huge hanging thing made of coat hangers.

Our very favorite was this sculpture of this really big man, called "The Big Man".

The kids spent a lot of time trying to figure out how they made him so realistic.

I walked into this huge room devoted to this painting, and there was Sean laid out on the bench. I think we walked at least 4 or 5 miles on Friday, so I guess he was entitled to a rest.

We walked another mile and found a place to eat with good food and reasonable prices, the Capitol City Brewing Company, where we ate 4 out of the 5 nights we were there because we don't know the city at all and good restaurants with affordable prices didn't seem to be abundant.

The good thing about all the walking was that we were bone tired by the time we got to bed and with Steven's clean scans under our belts, we slept like babies.

To be continued...

- Kathleen

Farewell to Memphis and On to D.C.!

Today I drove Sean over to the school he attended while we were in Memphis last year.

It's a small school, there is one class in each grade, so the second grade class at the school is the same kids that were with him in first grade last year.

When we walked into the gym where the kids were having P.E., they literally stopped what they were doing, shouted his name and came running over to hug him and give him high-fives. I think he was overwhelmed and he tried to hide behind me.

He finally became comfortable enough to go talk to the boy who was his best friend in Memphis, Joey, and I snuck back to the hospital to be with Steven.

Steven had his eyes examined, saw the speech pathologist, and his neuro-oncologist, Dr. Gajjar.

Everything looks good. We are tentatively scheduled to go back the second week of August.

And, since we couldn't leave Memphis without eating some of their famous barbeque, we went to Corky's for dinner with Joey and his family.

We are flying to Washington, D.C. early tomorrow morning for Brain Tumor Awareness Week and sightseeing. None of us have ever been there before so we're excited...

Regina's MRI of her brain and spine were all good too, so it's three more months for Steven and our St. Jude friends.

- Kathleen

Dinosaur Eggs, Frisbee Dogs, and The Results

We didn't end up seeing Steven's oncologist today. As a matter of fact, we only had one appointment today, with the oncologist and after we showed up for it, they cancelled it.

However, Dr. Gajjar's nurse did come out and tell us that the results were clear, the most beautiful words in the world for us right now.

So, with no appointments, we decided to head to the zoo. Steven and Sean pretended to be newly hatched dinosaurs.

We left directly from the zoo to go to Target House, our home away from home in Memphis for almost six months out of last year. The Purina Frisbee Dogs came to visit and perform for all the St. Jude kids.

Steven participated in a competition to see how well one of the dogs could catch his frisbee throws.

Our California friend Regina and her mom Diana are here this week also and Regina loved petting the dog.

Regina had the same type of tumor as Steven and she just finished up the same treatment in January. This is Regina's 3-month checkup and Steven's 12-month checkup. Steven loves Regina, and we hope her brain MRI tomorrow is perfect.

There's a saying about St. Jude, you come to St. Jude with one sick kid and you leave with thirty-five. Regina is one of our thirty-five.

- Kathleen

The MRI and an IV Without Tears

We bid goodbye to Jake and Tyler this morning after both of them received good MRI results.

Steven's special IV insertion team went into action, premedicating him with an adult-size dose of ativan, covering all possible IV insertion sites with Emla, and giving him a room with dimmed lights.

Angie distracting Steven while he gets his IV

Angie (at Steven's head) made seagull and ocean sounds while Leslie and Tara got the IV in his vein.

This was his best IV ever, the first IV insertion he's had that didn't involve either tears or inhaled gas.

Sean encouraging Steven before his MRI

Then off to the MRI. It's so great having Sean along, he provides a huge piece of Steven's "normal" life that I just can't give him myself.

Sean, just by being himself, brings Steven out of the cocoon of worry and sadness that he retreats into for at least part of every trip we make to Memphis.

Tomorrow morning we get Steven's MRI results.

- Kathleen

The One-Year Reunion

Jake, Steven, and Tyler

Today Steven had only one appointment, this was with St. Jude's behavioral medicine department for a cognitive evaluation.

I requested this appointment based on his school performance. Fourth grade at his school is all about writing, and it's writing that he has the most trouble with.

To make a very long story short, we spent two hours discussing Steven's school issues and came up with the conclusion that they are most likely caused by the radiation to his brain.

It is more likely than not that a child who has had radiation to their developing brain develops problems with attention, and it seems like this is what we're looking at.

When we get home, we will try some behavioral modification strategies suggested by the doctor, and we may also consider medication to address the problem.

Steven's friend Jake from Kansas City arrived on Sunday and Tyler arrived today from Georgia. Jake and Tyler are two of the three boys who were diagnosed with a similar brain tumor to Steven's within two weeks of when Steven was diagnosed. Jake and Tyler had their brain MRI's today.

For all three of them, this is their one year anniversary of finishing treatment on the same clinical trial.

Doug and Sean arrived this evening, and all of us went out with Jake and Tyler and their moms.

We went to Jillian's where we ate dinner and the kids played in the arcade, then on to mini golf.

Then back to Grizzlies House where the kids sat at the checkers table, got out a deck of cards and used the checkers as poker chips.

They played blackjack for a while until they decided that playing to 21 was too boring and that 35 would be a far more interesting goal.

They had a blast. Watching them play it is almost possible to believe that nothing bad ever happened to them.

We're praying hard for clean MRI's for all three of them and that next year we'll be together celebrating their two year anniversary.

- Kathleen

Stark Raving Calm

Settled in and ready for bed

We flew like the wind today.

For the first time I utilized the online check-in, checking in from home on Saturday and printing our boarding passes, along with a coupon for free headphones.

We didn't actually leave our house until a few minutes after 7:00 am, for an 8:20 departure. But we made it to the gate about 10 minutes before the flight started boarding.

The flights were on time, we got to see the movie Spanglish, absolutely no running was involved, and we landed in Memphis half an hour ahead of schedule to clear skies and bright sunshine.

When we got to the baggage claim, our bags were waiting on the carousel. There was nobody else around, no jostling for position.

The infamous shuttle bus driver from our last trip was waiting for us. As we were approaching him my cell phone rang and it was a friend from our church in Memphis.

She had wanted to pick us up at the airport, but she was working late so she sent her daughter to get us. Five minutes after we picked up our bags were in her daughter's car headed for St. Jude.

We checked into our room at Grizzlies House at 4:30 and had plenty of time to walk over and eat at the cafeteria.

Our buddy Jake and his mom Stephanie, who went through the same treatment as Steven at the same time, had to rely on the shuttle and didn't get to Grizzlies House until 8:30, had to order out, and their food didn't arrive until 10:00 pm-- that was us last time.

The view out our window: The Pyramid

Our first appointment tomorrow isn't until noon, so we get to sleep in and we've got a day to try an adjust to the new time zone.

Now why isn't it always like this?

Its enough to drive us stark raving calm.

- Kathleen

Patience Is A Virtue

• I will not get upset if I get singled out for special security precautions at the airport and they decide to unpack all my luggage.
• I will not get upset if the doors jam and won't open on the monorail in Houston that we need to take to make our connecting flight.
• I will not get upset if our connecting flight gets cancelled and we have to wait an extra two hours.
• I will remember that the time in Houston is two hours ahead of San Diego time.
• I will not get upset if we wait 1 1/2 hours at the airport in Memphis for all the arriving patients so that the bus driver won't have to make two trips.
• I will not get upset if the shuttle bus driver puts more people in the van than it accomodates.
• I will not get upset if the wait for the shuttle bus makes me miss dinner at the cafeteria and we don't have a car to go anywhere else.
• I will not get upset if we can't find a car to rent that doesn't reek of cigarette smoke.
• I will not get upset if I stand at the end of the line for breakfast in the St. Jude cafeteria for 15 minutes and when I finally get up to the front, the woman working behind the counter decides not to serve me because it's 10:01 am and they stop serving breakfast at 10:00 am.
• I will not get upset if we have appointments scheduled starting at 7:30 am and scheduling delays prevent us from finishing up until 9:00 pm.
• I will not get upset if our appointment schedule is changed from one day to the next without telling us.
• I will not get upset if we get up at 5:00 am (3:00 am Pacific time) for an MRI and we wait two hours and the doctor who is supposed to administer it never shows up.
• I will not get upset if the missed MRI gets scheduled at a time that prevents us from eating dinner.
• I will not get upset about Steven being scheduled for a spinal MRI and lumbar puncture that he wasn't supposed to have this visit.
• I will not get upset about our visit being scheduled to be two days longer than it needs to be to accomodate the appointments that Steven wasn't supposed to have.
• I will sleep well at the Grizzlies House.
• I will stay strong and calm for Steven, Doug and Sean.

Can you tell we're getting ready to leave for Memphis?

The only thing that really matters is a clean MRI, the rest is small potatoes.

Despite the scheduling snafus, St. Jude takes good care of us. The travel adventures aren't their fault. Doug and Sean are coming on Monday and they'll be there for Tuesday's MRI.

And I'm working hard on that patience thing...

- Kathleen

I Hope That Your Brain Toommer Is Heelling

I just found this again today. Sean wrote this to Steven while we were in Hawaii.

Dear Steven,

I hope that your brain toommer is heelling. You are a verry nice boy. I love you verry much beacause you love me and you are my brother.

Love, Sean

Maybe we'll keep Sean around a little longer after all...

- Kathleen

Steven's Esophagoscopy, Bronchoscopy, and Endoscopy

Steven did great overall.

The procedure took about an hour, the ENT came out and told me his throat probably wouldn't be sore at all.

Right... when he first woke up he kept trying to talk but all that would come out was a croak and he cried.

But back at home within a few hours he was fine.

The ENT said there were no obvious signs of reflux, but we'll have to wait for the labs from his esophagus and biopsy of his lung tissue to know for sure. Steven's ENT has been seeing him since the cleft palate days of his infancy. Before he left he told me what a great kid Steven was and how impressed he was with him and how he seems to roll with the punches and still maintain a positive attitude.

He is, he does, Steven is a gift.

I just wish there weren't so many punches.

- Kathleen

Thank You, Catherine And Anna!

Graphic designers Catherine and Anna, of Blog Togs Design, generously donated their March income to St. Jude in honor of Steven.

We are so grateful that they are interested in supporting the work of St. Jude and saving the lives of all the little ones with catastrophic illnesses.

Thank you sooo much!

Finding Cures. Saving Children.

To: Steven Bell From: Catherine Lane

Steven and Kathleen, On behalf of Blog Togs Design, which consists of myself and Anna, please accepte this gift of a donation of $435 for St Jude's Hospital in honor of Steven. We love you guys, Stay healthy Steven, Love Catherine & Anna xxx

Reflux, Voice and Hair

After Steven was so upset about being teased about his hair and his voice last fall, I encouraged him always to tell me if something was upsetting him and that I would always try to see if there was anything we could do to help even those problems that seem insurmountable.

To this end, tomorrow morning I'm taking Steven to Children's Hospital in San Diego for an endoscopy and bronchoscopy, the endoscopy to look at his palate and vocal cords, also to look for signs of reflux in his esophagus, and the bronchoscopy to look for signs of reflux in his lungs.

Steven definitely suffered from reflux as an infant, before his palate was repaired he threw up constantly, it was my constant challenge to feed him to keep the pediatrician from following through on his threat to put in a gastrostomy tube.

But as he got older, the obvious signs of reflux disappeared. He's got reactive airway disease, kind of like asthma but not chronic enough to call it asthma, and he's had seven bouts with pneumonia, the most recent this last October.

The current theory is that he's got reflux, and the pneumonia is caused by the reflux. However, they've tested for reflux before and there was no definitive proof that he is refluxing. He's been on prilosec, zantac, and similar sorts of medicines off and on since infancy and we'd like to find out if he really needs to keep taking this stuff.

They're also looking at his palate and vocal cords on my request, despite eight years of speech therapy his voice continues to be high-pitched and hypernasal. To me his sweet voice is adorable, but as he rapidly approaches adolescence I think "cute" is not really what he's striving for.

With regards to Steven's hair, I took him to the Hair Club For Kids last February to be measured for a hairpiece, which was supposed to be ready in a month's time.

I called them after two months had elapsed and I think someone had dropped the ball and somehow it hadn't gotten ordered. They called last week to say the hair is ready, now we're waiting for an appointment to get the hairpiece. He's excited about it, I really hope it works out for him.

He'll be under a general anesthesia tomorrow for his procedure, but I expect all to go well. At Children's Hospital San Diego, they knock the kids out with gas and allow the parents to stay until the kids are asleep. After the gas takes effect they put the IV in, so that trauma won't be part of tomorrow's experience, thank God.

So if you're inclined, say a prayer or hold a positive thought for him tomorrow, that the procedure goes smoothly and that the results are good.

- Kathleen

Zip Lines, BMX, and Male Bonding: The Mighty Tecolote

Steven getting ready to jump on the zip line

Doug took Steven and Sean out to East San Diego for a weekend of male bonding with the braves of The Mighty Tecolote Tribe.

Steven's zip line jump

Steven is technically out of Indian Guides this year, and they "bounce out" the braves after third grade, but Steven missed all last year's fun while he was getting chemo, so we're glad he's getting a chance to enjoy some of their activities this year.

Sean's zip line jump

Sean was too young, too short, and too light to participate in our Hawaiian zip line adventure 50 feet above the river last December, so he was thrilled to be able to participate this time.

Steven on the BMX track

There was biking on a BMX track, a treehouse, a 50-foot slide. The evening campfire which usually starts well before its dark, providing the maximum opportunity for the boys to play with the fire while the dads drink beer cook dinner.

Sean on the BMX track

This time, no one got burned, just a few scrapes from the BMX track, and they came home as usual, filthy and tired. And I got to sleep in till 11:00 am on Sunday, so I'm not complaining.

- Kathleen

Lost Wages

The view out of our window

While the poor people sleeping
With the shade on the light
While the poor people sleeping
All the stars come out at night
You go to lost wages, Las Vegas,
you go to lost wages
- Steely Dan

The lions at the MGM Grand

For the first time since Sean was born, Doug and I went away for a weekend without our kids. We left them with my sister Janet and we drove to Las Vegas with Doug's parents.

Patience was a virtue necessary to experience the strip, to drive the four miles from one end of the strip to the other took an hour. Once we decided to try a side street, but the traffic was even worse there.

The highlight of the trip was seeing Cirque du Soleil's "O" at the Bellagio, we loved it. The stage is a marvel of engineering, in one moment the stage would be a pool deep enough to accomodate divers diving from a 60-foot platform, in the next moment acrobats would be dancing in the same spot where the divers were.

I and my sisters Elizabeth and Janet all used to compete as synchronized swimmers, but we were never this good.

Osiris Resurrecting

We went to the Venetian to see their exhibit, "The Quest for Immortality: The Treasures of Ancient Egypt".

I had my camera but I didn't have the nerve to photograph some of the people we saw there, the groom and bride in the white wedding dress with the tattered and dirty hem, with drink in hand walking a zigzag line from one table to the next, we were speculating she'd been awake for a couple of days since her wedding and was trying to save money by avoiding a hotel room in the city that never sleeps.

The 60-something woman in a turban and dressed like I Dream Of Jeannie and sporting a Pamela Anderson boob job, also not walking a straight line and being supported by another woman. The guy in the chicken suit playing Craps. What looked like a group of forty-something fraternity guys reliving their lost youth, walking from one casino to another, drinks in hand, dressed in hula skirts and bikini tops.

We lost our wages this time on shows and meals, not gambling. But maybe next time, there are a lot of shows we'd like to see and we've got to figure out some way to pay for them...

- Kathleen

Trikes for St. Jude

	Mira Mesa Presbyterian Preschool, the preschool that both Steven and Sean attended, organized a Trike-A-Thon to benefit St. Jude last week during Steven and Sean's spring break and they invited Steven and Sean to come back and visit and I spoke to the parents about St. Jude and the work they do to save the lives of children with catastrophic illnesses and support their families.
They will be donating the proceeds to St. Jude in honor of Steven. We are ever so grateful to the preschool for organizing this event, and to those who contribute to support the work that saved Steven's life and the lives of so many of our little friends.

So, thank you from Steven and the Bells!

- Kathleen

I Wish To Go...

see Ursus Maritimus in their natural habitat...

and to see the northern lights...

Now, how cool would that be?

Steven has been generously granted a wish by the Make-A-Wish Foundation.

After much thinking about many different possibilities for a wish, his final choice was a trip up north.

So, sometime next November, we are going to embark upon a trip to northern Canada, to the city of Churchill in Manitoba on the Hudson Bay, to see the polar bears in their natural habitat.

We will be traveling in tundra buggy, a large vehicle with huge tires, kind of like a monster truck, that is specially equipped to go out on the tundra where the polar bears live. Hopefully it will be quite an adventure.

A nearby school, Solana Santa Fe Elementary, has "adopted" Steven and the students at the school are raising funds to help pay for Steven's trip.

Steven and two 5th-grade girls who put up a lemonade stand to raise money

Last Wednesday, they invited us to come and visit their school so the students could meet Steven.

Steven holding a frozen fish in the 5th grade class

It was Ocean Week there, and every classroom was doing different activities related to learning about the ocean.

Steven got to check out the third grade crayfish experiments

Steven was invited to the different classrooms to see their experiments and to meet the students.

Steven was interviewed for their school TV station, the Coyote Broadcasting Company

Everyone was so nice, it was a humbling experience. The sixth graders studied the Arctic in anticipation of his trip, and are putting together a book for him about interesting Arctic facts.

As we were leaving, Steven was asking if he could go to that school. They promised to invite us back in a few weeks.

We are so grateful to Make-A-Wish and Solana Santa Fe School.

We can't wait...

- Kathleen

Requiescat In Pace

Ioannes Paulus PP. II
Karol Józef Wojtyła
18.V.1920 - 2.IV.2005

---

Oratio pro Defuncto Summo Pontifice

Deus, qui inter summos Sacerdotes famulum tuum Ioannes Paulus ineffabili tua dispositione connumerari voluisti: praesta quaesumus; ut qui unigeniti Filii tui vices in terris gerebat, sanctorum tuorum Pontificum consortio perpetuo aggregetur. Per eumdem Dominum nostrum Jesum Christum filium tuum, qui tecum vivit et regnat in unitate Spiritus Sancti, Deus, per omnia saecula saeculorum.

Amen.

---

Vaya con Dios, John Paul.

For the duration of the novendiales the background will remain black.

- Kathleen