Life With Steven

Eulogy for a Princess

2009-09-29T11:24:00.001-07:00

Regina's Memorial Service Slideshow

My name is Kathy Bell. Although I live with my family only about an hour away from here in San Diego, the first time I met Regina Tan was in November 2004, in Memphis, Tennessee at St. Jude Children’s Research Hospital.

Five years old at the time, Regina was sitting on a blue sofa in the Target House apartment she shared with her mom Diana and her aunt Sija. She sat coloring, so beautiful, all forehead and eyes, her head smooth and unblemished except for the curved question-mark-shaped scar above her left ear.

My ten-year old son Steven was with me. He took off his baseball cap and showed Regina his own head, covered with a baby-soft layer of newly re-grown hair, except for the bald spot exposing the question mark above his own right ear, Steven’s scar a mirror image of Regina’s.

Regina and Steven were diagnosed with the same rare brain cancer, eight months apart. Regina was recovering from her second stem cell transplant, and Steven was in Memphis for his six month post-treatment checkup.

Discovering that your child has a life-threatening disease is like being dropped along with your child into the midst of a tidal wave, your child can’t swim and the waters are so rough that no matter how strong a swimmer you are, it will never be enough for the maelstrom you find yourself in.

It was in the midst of such turmoil that I was introduced to Regina’s parents Diana and Nick, a few days after emergency surgery to remove the malignant tumor found in Regina’s brain. We had just returned from eight months in Memphis with Steven after aggressive treatment to save his life. After considering their options, Nick and Diana decided to take Regina to Memphis for the same treatment that Steven had just completed.

There is a saying at St. Jude, you arrive with one sick child and you go home with thirty five. It is impossible not to come to love those little bald heads as they battle the devastating diseases they’ve been dealt.

And so we fell in love with Regina. We "adopted" the Tans and we followed Regina from afar, through radiation and four cycles of high-dose chemotherapy, along the same paths that Steven had traveled eight months before. We prayed for smooth sailing and a successful outcome. We prayed for her return to a disease-free childhood.

Regina has been living with cancer and the shadow of cancer for over five years, more than half of her life. Still, cancer was most definitely not what Regina was about and not what I am here to talk about.

So, what was Regina about?

Regina was about birthdays. On the day that Regina turned five, she was in the hospital in Memphis getting her very first dose of chemotherapy. Her sixth birthday was spent in more pleasant surroundings at Disney World in Florida, and when she got home she had a second party with her friends at Chili’s Restaurant. On her seventh birthday, she had a Disney princess party at her house. On her eighth birthday, Regina was at Ronald McDonald House recovering from chemotherapy, but there was cake and when her blood counts recovered, she had a proper celebration with her friends at home. When Regina was nine, her princess party was wedged between cycles of chemotherapy. And Regina’s most recent birthday could only be described as a miracle, it is so clear that she wanted to spend her tenth birthday here with her family, and so she did.

Regina was about traveling. She went to Disney World in Florida courtesy of Make-A-Wish. She went to China and twice to Estonia. She went to Big Bear and Palm Springs and San Francisco.

Regina was about fun activities close to home, Disneyland and Legoland and Sea World and Build-A-Bear and the American Girl Store.

Regina was about Hollywood and show business, backstage passes and meeting celebrities, Hanna Montana and Britney Spears and Miranda Cosgrove and the American Idol contenders. Regina appeared on the big screen in the movie My Sister’s Keeper, joined the Screen Actors Guild and received her first pay check.

Regina was about fun with her friends, even though her illness kept her out of school and away for extended periods of time. Sleepovers and swimming and dress-up parties occupied her time when her health permitted. While Regina was in Memphis she looked forward to returning home and having a sleepover with her best friend Heather. Heather waited a year to start kindergarten while Regina was in Memphis so they could start together when Regina came home.

Regina was about fashion and dressing up in fancy gowns and one of her goals was to be a model. Her clothes expressed her own unique tastes and individuality, princess dresses and elegant gowns put together from whatever she could find. She wore Hanna Montana and Hello Kitty and Sleeping Beauty and Tinkerbell and anything fashionable, feminine and frilly. She had certain favorite items, the pink crocheted cap she started wearing in Memphis that finally wore out and Diana crocheted her another, the pink Sleeping Beauty poncho that I once mistakenly called a cape, the pink Disney princess dress with the cap sleeves and bow and the rows of tulle and glitter.

One of my favorite images of Regina was on her first day of kindergarten. She rocked her first day at school in a plaid skirt with matching shirt and purse, pink tights with white polka dots and appliquéd ladybug, purple Minnie Mouse sunglasses, pink Disney princess rolling backpack and the pink crochet cap, and an I’m-ready-to-take-on-the-world smile.

Regina was about fighting for the simple privilege of being alive. Hidden beneath her petite frame and feminine attire was the heart of a warrior. When she relapsed with over forty new tumors in her brain, the doctors gave her two months but she took twenty seven. Even as her treatments were failing and her tumors were growing, she continued to set goals, she wanted to grow up to be a teenager, she wanted to be a fashion model, she wanted to be a chef and cook meals for Diana.

Eleanor Roosevelt once said, "We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face. We must do that which we think we cannot."

Regina is a heroine. And even though they don’t believe it, so are her parents Diana and Nick, for the way they have looked fear in the face and done the thing that every parent believes they cannot, loving their child from the womb all the way up to heaven.

My family and I prayed and hoped and visualized a different ending to Regina’s story and along with all of you who loved her, our hearts are broken.

I have no magic words of comfort to offer, only admiration and gratitude and love and faith that the memory of Regina along with the help of all the friends in your lives who love you too, it will somehow be enough to help you face the journey that now lies ahead.

From the bottom of our hearts to the tips of the stars, we love you, Regina Melody Tan. Good night, sweet princess, may flights of angels sing thee to thy rest.

With love,
Kathleen

To the Tips of the Stars

2009-09-25T15:17:00.000-07:00

I've worked on this post a hundred times, starting over a month ago, and I just don't know how to write it. I'm usually not at a loss for words, but this time I am.

So I'll just tell the story.

It was 1995, just after Christmas. Steven was 15 months old. We'd spent the past week in PICU, including Christmas, at Children's Hospital San Diego after Steven suffered a life-threatening bout with pneumonia.

We got a phone call from my 4-year old niece Kyra who told us all about her Christmas. Kyra's inoperable brainstem tumor had recurred the previous September with a vengeance and her family had paid for two more months of her life with aggressive radiation.

Afterward Kyra's mom shared with me that Kyra had woken up that morning having lost the use of her right hand. It was the first outward sign of her cancer coming back for it's third and final round.

Kyra slowly declined over the next few months, she was in no pain. She took her last breath the day after Valentine's Day in 1996.

Sometime in late January or early February, I forget the exact day, Kyra's mom Deb sent out a letter that began, "I regret to say that Kyra is dying..."

Steven continues to do well. We are so very blessed.

The thing I couldn't bring my self to write was that our friend Regina was dying.

We've lost too many friends already, still, there's no getting used to it, this hurts.

This story had to start with Kyra because she is where this began. When Kyra was ill, before we ever imagined that Steven might end up with a brain tumor, I was involved in an online support group and through that group met a man who lost his daughter to a brainstem tumor in 2001.

Two weeks after we returned from Memphis at the end of Steven's treatment, my friend sent out an email looking for a family to pair up with a family near us whose daughter had just been diagnosed with the same rare brain tumor as Steven.

And so we met the Tans, who live about an hour away from us. We shared our experiences with them and they ended up taking Regina to Memphis, to do the same treatment that Steven had just completed.

Regina did really well for a while, following in many of the same paths as Steven, eight months behind him.

But she relapsed in June 2007 with over thirty new tumors in her brain. She's pretty much been on treatment since. Her doctors did an awesome job of keeping her alive without compromising her quality of life.

Last July Regina had an MRI confirming that her tumors were growing again, and there were no more options, it was time to lay down her sword.

Regina and her mother came to stay with us for a short visit in July before the bad MRI, but we suspected it. Like Kyra, she started losing the use of her right side.

In the last two months, watching Regina gradually decline, I've remembered things about Kyra that I never even knew I'd forgotten, things locked away for well over a decade.

I shot video of Kyra's memorial service back in February 1996 and I've never watched it, it's sitting in the box we packed up when we evacuated our house for the San Diego fires almost two years ago.

Like Scrooge, I am haunted, by the ghosts of past, present, and yet-to-come.

Nobody thought Regina would be here for long after treatment ceased. Regina's tenth birthday was September 19, nobody thought it would be that long.

Regina told her mom she wanted a party, but at that point she wasn't able to get up and was sleeping most of every day.

So her mom threw together an impromptu birthday breakfast on September 2 and Regina made an appearance. Then she was carried back up to her parents' bed where she received visitors.

Defying all predictions, Regina made it to her birthday. The next morning, shortly after everyone was up and about, she passed from this world to the next, peacefully at home.

Regina's services are on Monday at Saddleback Church,. I have been trying to put together a remembrance of Regina for her services, so difficult to put into proper words what for me right now could more honestly be expressed as tears, screams and curses.

What a perfect day to memorialize Regina's time on earth, it coincides with the day that Chilis Restaurants donates 100% of their profits to St. Jude.Regina loved eating at Chili's, and we celebrated Regina's 6th birthday party there, timed to coincide with the St. Jude fundraiser.

Join us in lighting a candle for Regina.

From the bottom of our hearts to the tips of the stars...

- Kathleen

Kyra, the Swine Flu, and the Dramatization of Disease

2009-05-01T01:02:00.000-07:00

I stayed with my parents last week, helping my dad out with my mom as she recovers from her recent open heart surgery.

As a rule I don't listen to any news on TV, but this week I've watched more cable news in the last three days than I've seen in the last six months.

Today there was this big news conference about the swine flu and there was video of people wearing HEPA masks and talking about their local pharmacies being sold out of antibacterial hand cleanser.

I decided to do some checking to see if I should be worried or not.

As of 30 Apr 2009 (updated 3 May), the number of laboratory confirmed swine flu cases in the U.S. is:

	Laboratory-confirmed cases		Deaths
State/Country	4-30-09	5-03-09	4-30-09	5-03-09
Austria	1	1	0	0
Canada	19	70	0	0
Costa Rica	0	1	0	0
Denmark	0	1	0	0
France	0	2	0	0
Germany	3	6	0	0
Hong Kong	0	1	0	0
Ireland	0	3	0	0
Israel	2	3	0	0
Korea	0	1	0	0
Netherlands	1	1	0	0
New Zealand	3	4	0	0
Spain	13	13	0	0
Switzerland	1	1	0	0
United Kingdom	8	15	0	0
TOTAL COUNTS (international)	51	123	0	0

Mexico	97	7	506	19
TOTAL COUNTS (Mexico)	97	506	7	19

Alabama	0	1	0	0
Arizona	1	18	0	0
California	14	26	0	0
Colorado	0	4	0	0
Connecticut	0	2	0	0
Delaware	0	10	0	0
Florida	0	3	0	0
Illinois	0	3	0	0
Indiana	1	3	0	0
Iowa	0	1	0	0
Kansas	2	2	0	0
Kentucky	0	1	0	0
Massachusetts	2	7	0	0
Michigan	1	2	0	0
Minnesota	0	1	0	0
Missouri	0	1	0	0
Nebraska	0	1	0	0
Nevada	1	1	0	0
New Hampshire	0	1	0	0
New Jersey	0	7	0	0
New Mexico	0	1	0	0
New York	50	63	0	0
Ohio	1	3	0	0
Rhode Island	0	1	0	0
South Carolina	10	15	0	0
Tennessee	0	1	0	0
Texas	26	40	1	1
Utah	0	1	0	0
Virginia	0	3	0	0
Wisconsin	0	3	0	0
TOTAL COUNTS	109	226	1	1
Source: http://cdc.gov/swineflu/ World Heath Oranization

The only death from swine flu in the United States so far was a a 22-month old Mexican citizen who had crossed the border with his family to visit relatives in Texas. The boy contracted the flu in Mexico and had several underlying health problems preceding the swine flu diagnosis. (source: Texas Department of State Health Services)

Almost all of the large number of swine flu cases in New York can be traced back to over 20 students from a Catholic high school who spent spring break in Cancun and came home sick. The students in New York have all been treated and released and have recovered or are recovering at home.

For the period 1972 to 2001, the number of annual deaths due to garden variety influenza averaged 41,400 per year in the U.S., but that little fact almost never makes the news. (source American Journal of Epidemiology)

I am having a hard time understanding this panic, tens of thousands of people in the U.S. die every single year from the flu and while it is great to be prudent and take precautions to prevent infectious disease, what we have right now is school closings and mass panic.

Enter brain tumors, a topic near and dear to my heart. For the period 2000-2004, an average of 15,596 people of all ages combined died per year from brain tumors. (source Central Brain Tumor Registry of the U.S.)

In 1995 the NCI reported the number of children who died from cancer, broken down by age: (source: NCI SEER data)

Age	Number of Deaths
0-4	558
5-9	523
10-14	503
15-19	691
TOTAL	2,275

So in the U.S, 2,275 of our kids died from cancer in 1995, 569 of them from brain tumors. This number does not account for "benign" (non-invasive) brain tumors, which also kill our kids but in 1995 they weren't being counted.

Today, May 1st, is my niece Kyra's birthday. She would have been 18, a legal adult, but the thing is, she died in 1996 at the age of 4 from a brain tumor. My oldest son Steven was 18 months old when she left us.

We asked why. The doctors told us that pediatric brain tumors are rare, Kyra's tumor wasn't genetic, it was just the luck of the draw. In other words, sometimes sh*t just happens.

Seven years later Steven is having headaches and nausea, not severe, and we're seeing doctors who are prescribing allergy medication and we're drawing blood and finally I get hysterical and they order an MRI and the next thing we know we're staring at pictures of the baseball-sized glowing thing in his 9-year old head as he lapses into a coma.

Random chance? Air pollution? The will of God? Genetics? Too many hot dogs? Not taking the right vitamins?

Sometimes bad things just happen and we just need to bear our crosses, but in this case, nobody has even done the studies.

We know about high fat diets and lack of exercise and pesticides and cell phones but babies don't get cancer from those things.

There's a bill that was introduced late last year, The National Childhood Brain Tumor Prevention Network Act, (HR 653 / S.305). We're asking for $25 million dollars per year for 5 years ($125 million total) to conduct a comprehensive, nationwide study into the causes of pediatric brain tumors. So when a kid is diagnosed with a brain tumor, participating hospitals will take a comprehensive medical history and draw blood, maybe not just from the child but also from family members to see if there is any pattern to these monsters that come from nowhere to grow in our kids' heads.

$125 million over 5 years. $25 million a year. There are homes in San Diego County that cost that much, even in the current economic downturn. Right now our little bill is sitting in the House Committee on Energy and Commerce, waiting for co-sponsors and for someone to care enough to bring it to a vote.

On the news this week, amidst the school closings and HEPA masks and press conferences and unsubstantiated deaths, I hear that president Obama asked Congress to add an additional 1.5 billion to fight the swine flu. (source: Washington Post)

1.5 billion dollars. Just like that. For a disease that has so far affected less than 300 people internationally. A disease that has yet to kill a single American.

Here we are, our little parent groups, jumping through hoops in between doctor's appointments and trying to figure out how to save our kids' lives, trying to get someone to listen to us and give us $40 million less than than what AIG paid its top executives. For a 5-year nationwide study, to try and help the hundreds of our kids that die every year from a disease that nobody understands.

Sensationalistic news reporting is nothing new, but if I hear one more of those incompetent idiots on the cable news quoting hundreds of deaths from the swine flu with data pulled from heaven only knows where, I think I'll scream.

And despite the fact that California has declared a state of emergency and I live only 30 miles from our nation's southern border, you won't find me donning a HEPA mask to go to Costco anytime soon.

Instead, I'll be making yet yet another call to my Representative in Washington in the hope that persistence pays off and he'll put his petty little reasons why not and agree to be a co-sponsor on our little bill.

I'm not holding my breath, but I'm still got to try. For Kyra, Steven, and the too-many-to-list kids I've come to love both in heaven and on earth.

Happy Birthday, Kyra, from the bottom of my heart to the tips of the stars.

- Kathleen

Swine flu information:

My Miraculous Mom

2009-04-19T22:50:00.000-07:00

Mom and Steven

My mom got out of surgery on Saturday around 1:15 pm, but they didn't remove the breathing tube until around 7:30 pm.

We got to see her a little after 8:00 pm, and although she was painted with betadine from head to the tips of her toes (literally), she looked good and was laughing and talking, albeit a bit trembly and shaky.

She's talking to Steven

Sunday she woke up wiped out and refused visitors all day. I waited until around 5:00 pm when I had to head back to San Diego and I went over to the hospital, where I was going to beg for at least a peek at her before I had to drive home.

When I showed up she was happy to see me and Steven and we got to visit for 20 minutes or so.

Doesn't she look great?

My mom, our miracle.

- Kathleen

Fixing Her Broken Heart

2009-04-18T10:05:00.000-07:00

I stayed with my mom at the hospital until around 1 am this morning. She "put her face on" before she went to sleep just in case she wouldn't have time to do it during pre-op.

We hung out with her in pre-op and they let us escort her to the operating room. As always, she was looking great and was in great spirits.

Her mitral valve had multiple defects, so it wasn't repairable and now she's got a pig valve. She's out of surgery and the doctor said that everything went well.

We saw them wheel her out of the operating room, she's still intubated but in the next hour or so they'll work at getting her breathing on her own.

Her eyelids were taped closed but her eye shadow was still intact.

Its the heart afraid of breaking
that never learns to dance.
Its the dream afraid of waking
that never takes a chance.
Its the one who won't be taken
that cannot seem to give.
and the soul afraid of dying
that never learns to live.

- Bette Midler, The Rose

-Kathleen

A Happy Easter

2009-04-16T19:29:00.000-07:00

Rebekah, Elijah, & Elizabeth

After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb.

Steven and Doug playing Magic

There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. His appearance was like lightning, and his clothes were white as snow. The guards were so afraid of him that they shook and became like dead men.

Elijah and Arnold

The angel said to the women, "Do not be afraid, for I know that you are looking for Jesus, who was crucified. He is not here; he has risen, just as he said. Come and see the place where he lay. Then go quickly and tell his disciples: 'He has risen from the dead and is going ahead of you into Galilee. There you will see him.' Now I have told you."

Dad and his sister Loie

So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. Suddenly Jesus met them. "Greetings," he said. They came to him, clasped his feet and worshiped him. Then Jesus said to them, "Do not be afraid. Go and tell my brothers to go to Galilee; there they will see me."

Mom & Rebekah

While the women were on their way, some of the guards went into the city and reported to the chief priests everything that had happened. When the chief priests had met with the elders and devised a plan, they gave the soldiers a large sum of money, telling them, "You are to say, 'His disciples came during the night and stole him away while we were asleep.' If this report gets to the governor, we will satisfy him and keep you out of trouble." So the soldiers took the money and did as they were instructed. And this story has been widely circulated among the Jews to this very day.

Mom & her sister Shirley, Elizabeth, Elijah & Rebekah

Then the eleven disciples went to Galilee, to the mountain where Jesus had told them to go. When they saw him, they worshiped him; but some doubted. Then Jesus came to them and said, "All authority in heaven and on earth has been given to me. Therefore go and make disciples of all nations, baptizing them in[a] the name of the Father and of the Son and of the Holy Spirit, and teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age."

Esme the cat

We all got together on Easter at my sister Elizabeth's house.

Mom on the Harley with her biker friend

We had a great time. My mom was feeling a little under the weather, but nothing major.

My biker mom

She went to see the urologist on Monday, thinking she had a urinary tract infection. The tests came up negative, but the urologist heard a heart murmur.

She's trying to throw gang signs

My mom went for some more tests and they found that she's got a tear in her mitral valve.

But she doesn't quite get it

So, she's having open heart surgery this Saturday at St. Joseph's Hospital in Orange to replace her heart valve. They are performing tests tomorrow to help decide exactly what they'll be doing on Saturday, the three possibilities are to repair her existing valve (highly unlikely), to put in a pig valve, or to put in a mechanical valve.

Since they're going to the trouble to open her chest, tomorrow they're going to do more tests to determine if there is anything else they need to do while they're in there.

We're optimistic that everything will go smoothly, still this is a big deal and everything has happened very quickly.

I know I'm getting to be an old lady myself, but I love my mother and I still need her.

So please join us in praying that everything goes smoothly. We should all look so good at 80.

Mom, I love you.

- Kathleen

Steven's February Scans

2009-02-23T00:58:00.000-08:00

I requested Steven's scans on CD and put together a video of the different scans.

The video shows all the different slices they take, with and without contrast. The colored images at the end are looking at white matter changes.

Steven's February MRI.

- Kathleen

Eye Clinic and Celebration Dinner

2009-02-19T22:52:00.000-08:00

Steven has really droopy eyes, with a pronounced droop on the left side. The droopiness has been getting increasingly worse over time.

During his opthalmologist visit, they noted a decrease in his peripheral vision on the visual field exam. The doctor who saw him on Tuesday recommended we see the oculoplastic surgeon who would be in the eye clinic on Thursday.

So we rescheduled our return flight from Wednesday to Thursday so we could see the eye surgeon. The tentative plan was for him to examine Steven, then do the surgery when we return for our August visit.

The surgeon determined that fixing Steven's droopy eyelid would be more involved than a single outpatient procedure, so we will pursue treatment in San Diego and hope that we can get our insurance to cover it.

We celebrated the clear MRI by taking the trolley downtown and eating some very excellent barbeque at Rendezvous.

After dinner we went up to the top of the Peabody Hotel and enjoyed the nighttime view.

We then sought out our duck friends in their Duck Palace on the hotel roof.

We are ever so grateful to be home again with good scans.

And many thanks to all of you who think of and pray for us-- we appreciate it more than we can show.

- Kathleen

Waiting for the All-Clear

2009-02-17T22:03:00.000-08:00

Tuesdays are clinic days in the E (neuro-oncology) clinic. I am always sadly amazed at the sheer number of new faces, the never-ending stream of new families seeking desperate treatments to keep their children with them.

Waiting is part of the game in E Clinic. We wait to be called, to see the doctor, to have our fortunes told. Steven plays Age of Empires and I chat with other families and we all pretend that we're not nervous.

Dr. Gajjar walks through the clinic waiting room and waves, but doesn't give a thumbs-up as he does sometimes. Steven wonders if the absence of the thumbs-up portends bad news.

On previous visits while we wait, sometimes a child life social worker walks through the waiting room attended by the chaplain, they head through the clinic doors and enter a patient room. We pray for those families.

On Tuesday we are called to a room about an hour after our appointment time, where we wait some more. The E Clinic rooms have I Spy posters on the wall, a distraction while we wait.

Dr. Gajjar's nurse Lizzie comes in and says she still hasn't seen the MRI results but thinks all is well. She gives Steven a neurological exam.

Finally, Dr. Gajjar enters with good news, the MRI is clear. We are grateful for another six-month reprieve.

- Kathleen

President's Day in Memphis

2009-02-16T20:52:00.000-08:00

Our flight to Memphis was thankfully uneventful and on-time. We even got there in time to eat in the cafeteria, where I harassed Steven by taking pictures of him while he was eating.

The scheduling gods at St. Jude smiled down upon us this time and granted that Steven wouldn't have to have a fasting blood draw at 7 am (5 am California time), mercifully the first appointment was 9 am.

Steven and I spent 3 hours down in the Behavioral Medicine clinic participating in a study entitled, "SADHD1: Pilot Study of Primary and Secondary Attention-Deficit/Hyperactivity Disorder Among Survivors of Childhood Cancer". I fill out multiple detailed forms, and Steven more neurocognitive testing, as well as detailed interviews.

Our hope is that one day these studies reveal something useful that can be used to help the kids who've had to go through such rigorous and toxic treatments at such a young age.

Despite making progress, Steven still has a full-blown phobia about IV's. He began worrying about the IV he was going to have to get before it was even February.

But the IV is a necessity, that's how they inject the MRI contrast solution. So I start by teasing him and taking pictures, trying unsuccessfully to get him to laugh.

This time none of our familiar nurses can be found. It's been over 2 years since anyone failed in their first IV attempt, but on Monday the first attempt resulted in a blown vein.

Steven is shaking and drenched in ice cold sweat from head to toe, trying hard not to cry.

The second attempt was successful, but barely. Steven de-stressed with a little Sonic the Hedgehog.

The MRI in the new Chili's Care Center allows Steven to watch a movie. They mount a mirror to the MRI head frame and Steven wears headphones.

This works great for Steven, whose biggest problem in the MRI has been falling asleep and then twitching. The movie helps keep him awake.

I accompanied Steven into the MRI and about 20 minutes or so into his 1-hour-plus scan, I heard a sound, through the ear protectors and over the screeching and jackhammering of the equipment.

Standing at Steven's feet and peering into the tube, I could see that the mirror had fallen off the head frame and one corner of it was poking directly into his eye.

So I stand at the glass waving my arms and pointing at Steven and finally get the attention of the MRI techs, who mount a new mirror and the scan continues uneventfully.

They want to pull the IV since they think it won't work well enough for Steven's Tuesday blood draw but Steven is adamant that he wants to give it a try.

So, we leave the IV. It's late, the cafeteria is closed, too late for the Grizzlies House dinner and we don't have a car this time, so Domino's delivery it is.

And prayers for clean scans...

- Kathleen

Kyra

2009-02-15T20:29:00.000-08:00

From the bottom of my heart
To the tips of the stars
I miss you baby girl...

Rest in peace, and save a place for me.

KSON Cares for St. Jude

2009-01-30T15:06:00.001-08:00

It's time for the annual 2-day radiothon on our local country music station, KSON 97.3 and 92.1 FM.

This is kind of an annual event for Steven and me.

Late notice, but Steven and I will be interviewed briefly, probably sometime between 4:00 and 5:00 pm PST today (Friday). Click here to listen online.

- Kathleen

Comets' 10th man: Young cancer patient inspires Palomar hoops team

2009-01-16T20:47:00.000-08:00

This article about Steven (below) appeared in a local paper earlier this week.

Source: North County Times.

By RICK HOFF - For the North County Times

SAN MARCOS ---- A ton of inspiration can come in a small package. Just ask anyone associated with the Palomar College men's basketball team.

As the Comets get into the meat of their Pacific Coast Conference schedule, they need not look any farther than their own bench for a pick-me-up, courtesy of Steven Bell.

"Steven is like our 10th man," says sophomore guard Theo Overstreet, the team's leading scorer. "We're glad to have him support us, which he always does whether we lose or we win."

Steven, an eighth-grade honors student at Carmel Valley Middle School, was on the bench again Saturday night at the Dome, where the Comets improved to 3-2 in PCC play with a 71-67 come-from-behind win over Grossmont.

"He seems to be good luck for us," said sophomore center Richard LaFleur, who scored 21 points in Saturday's victory. "It's definitely nice having him around."

Steven and his family, including parents Doug and Kathy and younger brother Sean, feel the same way.

"I was diagnosed with it three days after my ninth birthday," says Steven, who speaks of his condition with a comfortable ease. "I had the surgery, and I continued to have treatment at St. Jude Children's Research Hospital."

The noted pediatric cancer hospital, founded by the late entertainer Danny Thomas and located in Memphis, Tenn., has provided Steven with chemotherapy and radiation treatments for the last five years.

"It was every three months for three years, then every six months the last two years," Steven said. "We go again in February, and if everything checks out OK, I'll only have to go back once a year after that."

In the meantime, Steven can carry on with his affliction for hoops. When he isn't watching younger brother Sean play in his Carmel Valley recreational youth league, Steven can be found at practices and games for the Palomar men's team.

"I love watching basketball," he says. "I've been interested in it a long time."

The connection to Palomar College came via the Friends of Jaclyn Foundation, a New York- based program dedicated to matching young brain tumor patients with local college and high school sports teams.

As with young Jaclyn Murphy, who was matched with the Northwestern women's lacrosse team, nearly all of the participants in the FOJ program are from the Midwest or East Coast. The program was founded by Jaclyn's father, Denis Murphy.

"A mutual friend helped put me in touch with Denis, and we found out there was a team in the San Diego area Steven could connect with," Kathy Bell said. "It's really been good for him."

As all cancer patients and their families know, treatment can be a tough go.

"He's held up very well," Kathy said of her son. "He's had four stem-cell transplants, and that can be a really rough treatment."

The Comets have helped provide some tonic.

"Inspiring Steven may be the best thing these guys do all season," Palomar assistant coach Brad Hollingsworth said.

"It helps us knowing that we help him," LeFleur said. "We play harder when he's around.

"How can you not?"

For more information on the Friends of Jaclyn Foundation, visit friendsofjaclyn.org.

Merry Christmas!

2008-12-19T17:35:00.000-08:00

Send your own ElfYourself eCards

The Laundry and the Tooth Fairy

2008-11-26T08:48:00.000-08:00

I mentioned in a previous post about Sean's obsession with wearing tan shorts year round, all the time.

At our annual shopping trip during the summer, where I buy Sean 90% of the clothes he will need for the next year, I purchased four new pairs of tan shorts. He hasn't gotten rid of the shorts from the previous year because they still fit. Kind of. He can get them most of the way zipped up.

I sometimes wonder what his friend's mothers think when they see him show up day after day in what appears to be the same set of shorts, and because they're light-colored, they always look dirty except when he's just put them on.

Sean is a very physical kid, and he loves playing football and baseball and sliding in the dirt and rolling around on the ground with the dog, so nothing light-colored stays clean for long on him.

He's got 6 pairs of tan shorts, 4 that fit and 2 of the previous year's 4 that are still semi-wearable.

He also owns jeans and shorts in different colors like blue, black and gray, but to Sean tan shorts go with everything.

Some of those shorts can't be gotten completely clean any more, but I do my best.

So today in the laundry, I see these shorts (above). I notice a small tear in the back, but what's that silvery stuff under the tear?

Duct tape. Well, he's resourceful. I personally would prefer not to be washing the family laundry with duct-taped clothing items in the dryer, but Sean is a man of the moment. I've thrown these shorts away once, but Sean apparently resurrected them.

Then, I'm changing the sheets on his bed and I find the above note (click on the photos to make them larger). Sean is supposed to be making his own bed these days, and that has affected the tooth fairy's promptness in noticing such items in his bed. But $100? I think I used to get a quarter or something.

The tooth fairy responds. She puts it under his pillow.

We'll see if he finds it when he wakes up. Depends on whether or not he makes his bed like he's supposed to.

We're getting ready to travel to my parents house for Thanksgiving at my sister Elizabeth's house.

Tooth story to be continued...

Happy Thanksgiving!

- Kathleen

Friends In Need Of Prayer

2008-11-15T19:08:00.000-08:00

Adam Balch

Adam Balch is the brother of a boy that goes to school with Steven. Last Valentine's Day Adam's mother shaved Steven's head as part of a fundraiser for the UCLA Neuro-Oncology center in honor of Adam.

After an unspeakable battle with his brain tumor, which left the skull and invaded his face and jaw, Adam passed away on October 4.

Adam was an amazing inspiration to everyone, maintaining his positive and outgoing attitude in the face of unimaginable pain.

The Balch family is in our prayers.

Steven Von Spreckelson and his wife Britney

Steven Von Spreckelson and his family were the very first people I met the morning after we arrived in Memphis in September 2003. Steven V was diagnosed with the same tumor as our Steven 18 months before, when he was a junior in high school.

It just happened that Steven and his family were in Memphis for a followup visit on our first day in the Brain Tumor clinic and a mutual friend set us up.

I was still in a state of shock and it was so encouraging to meet another patient who had completed the treatment that Steven was about to begin and who was doing so well.

Steven V was a source of encouragement to me, he finished high school and attended college and graduated with honors. Early this year he got married.

Last August, two weeks after our Memphis visit, Steven V was in Memphis for his annual followup and the routine MRI found new tumors, believed to be a recurrence of his original tumor, 6 years and 3 months after being cancer free.

So Steven V and his young wife are back and forth between Memphis and his home in Nebraska as he undergoes chemotherapy for the tumors, which are inoperable.

Regina

And lastly, our dear friend Regina. I haven't wanted to write about Regina I think because writing it down makes it seem more real and this is something we hoped never to have to face.

Regina was diagnosed with the exact same tumor as Steven on the opposite side of her brain. They live in Laguna Niguel, about an hour north of us and we were introduced to them by a friend of mine the week we returned from Memphis at the end of Steven's treatment.

They ended up going to Memphis and doing the same treatment that Steven did and Regina was cancer-free for 3 years, but she recurred in June 2007 with over 30 new tumors. She was given 2 months to live.

Two doctors at Children's Hospital Los Angeles put together a custom protocol for Regina and the tumors shrunk. Last January she was cautiously declared to have no evidence of disease.

But last September there were again areas of concern on her MRI and they tried a new chemotherapy regimen.

Regina had another MRI and a week and a half ago I accompanied Regina's mother Diana to talk with the doctor about the MRI results (Regina's dad was in China on business).

The results were not good, there was further growth of the new tumors, indicating that her chemotherapy regimen wasn't working and he didn't really have any new options for her.

Regina looks really well, to see her it would be impossible to tell that she is so seriously ill. But the MRI reveals the monsters growing in her head and the sort of tumor that she and Steven have is very fast-growing.

Sometimes it seems the bad news comes in waves. Please keep our friends in your prayers.

- Kathleen

Steven, The Comets, and Friends of Jaclyn

2008-11-14T00:32:00.000-08:00

See if you recognize anyone in this photo Palomar College Men's Basketball team:
http://www.palomar.edu/athletics/basketball-m/default.htm

So what's up with that short guy in the center wearing street clothes? The one who's not old enough to drive?

It all started with a girl named Jaclyn in New York.

Jaclyn was born in 1994, 22 days after Steven. Jaclyn and Steven have never met, but they share something in common.

Jaclyn was diagnosed with a malignant brain tumor just 6 months after Steven's diagnosis. The type of tumor that Jaclyn had is from the same family of tumors as Steven's and she went through almost the identical treatment.

Before the brain tumor, Jaclyn used to play Lacrosse. During her stay at the hospital for cancer treatment, there was a photo of a college women's Lacrosse team hung on the wall. That photo helped inspire Jaclyn through the long days in the hospital when she was feeling her worst.

The video below tells Jaclyn's story and how the organization came to be formed:

A friend of mine who works with Friends of Jaclyn called me when we were in Memphis to tell us about the organization and to see if Steven would be interested in being paired up with a sports team.

He was and so now he's a member of the Palomar College Comets Men's Basketball team.

Steven has been attending the team practices once a week and last Friday they played their first game.

I took Steven out of school early to attend but due to terrible traffic we were a few minutes late.

The Comets were behind when we arrived but shortly after Steven sat with the team, they took the lead and ended up winning the game.

Friday afternoon is their second game and he'll be there to cheer them on.

Vote for Project Brain Child

2008-09-17T12:25:00.000-07:00

Project Brain Child is an iniative of the Pediatric Low Grade Glioma Association.

Members Project is a program sponsored by American Express where cardmembers submit innovative ideas for projects that make a difference. Cardmembers vote on the projects, and the winning 5 projects will receive up to $1.5 million in funding from American Express, awarded as follows:

$1,500,000 for the winning project
$500,000 for the 2nd place project
$300,000 for the 3rd place project
$100,000 each for the two remaining finalist projects

The Pediatric Low Grade Glioma Association (PLGA) submitted their project idea to American Express in August. They will use the funds to conduct a feasibility study to create a National Pediatric Genomic Brain Tumor Registry. The information collected in this registry would allow scientific researchers and medical experts to target specific genetic abnormalities with existing drugs most effectively.

The registry will embody all brain tumor types, not just low grade gliomas.

Project Brain Child was selected from over 1190 other projects to be in the top 25. As of today, September 17, they are in 9th place.

They need to be one in fifth place or better to receive an award. Votes must be cast by September 28.

Any American Express cardholder may vote. If you don't have an American Express card, you can still help by spreading the word to your friends.

Brain tumors kill more children every year than all other diseases combined. Please help this effort.

More information:

So please consider taking two minutes of your time to vote for this worthy project.

The myth of managing grief

2008-09-11T22:35:00.000-07:00

School is back in swing.

So far, things this year are smoother for Steven. Since I last wrote, I'm another year older and so is Steven.

Life takes us to difficult places sometimes.

Our friend Regina's tumor may be growing again, her MRI was inconclusive and Regina will have further testing on Sunday. Her family is under a lot of stress right now.

Another friend, a little girl named Hadley up in Oregon, is dying from her brain tumor. Hadley happens to be a distant cousin of Stevie, who died in April 2007 from a different sort of brain tumor. Hadley's tumor went undiagnosed for several years, she was diagnosed as autistic, but in the end it turned out the autism was brain damage caused by the tumor.

Please keep them in your thoughts and prayers.

I'm going to Solvang this weekend with my mother and my two sisters Janet and Elizabeth, a girls-only trip, for my mother's 80th birthday.

More later, with photos.

For today, in honor of the terrorist attacks of September 11, 2001, I'm going to copy an article that appeared in the San Francisco Chronicle in April 2002.

The myth of managing grief

URL: http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2002/04/07/ED89714.DTL

Stephanie Salter

Sunday, April 7, 2002

Not long ago, a friend in New York said that she often feels cut off from the rest of the country because Sept. 11 is still so much with most New Yorkers.

"We've all gotten on with our lives, and if you don't go down to the (World Trade Center) site, there are no visible traces," she said. "But there's still so much grief and sadness hanging in the air."

People outside of New York can't really understand, said my friend.

"You talk with them and, if you didn't lose someone directly in the twin towers, it's like their tone says, 'Hey, shouldn't you be moving on?' They don't get that there's a collective grief. I actually prefer it when people don't even ask how it's going. It's easier."

Our American culture boasts many virtues and several strong suits, but grieving -- collectively or individually -- isn't one of them.

Unlike older societies, we have few formal grieving rituals in place to guide us. So, we try to tackle grief in our typical American way -- as if it's a problem to be solved, an illness to be cured, an unnatural, machine-gumming breakdown that needs to be fixed, ASAP.

Perhaps more phobic about suffering than any society in history, Americans tend to start the clock ticking early in "managing" grief. While solicitous and caring of the newly bereaved, we encourage heartbroken mates and parents to medicate themselves so they can "keep it together" through the funeral.

This ignores the fact that wailing and keening and "losing it" are a pretty accurate rendering of what humans inside feel like when someone we love dies or leaves us. But, in our culture, public wailing and keening are considered bad forms; they are seen as unwelcome reminders of pathology among "healthy" people.

Even the most devastating loss -- that of a child by a parent -- seems to carry an unwritten statute of limitations on grief, something I learned several years ago when I reported on an international organization called Compassionate Friends.

Founded in England in the late 1960s, the massive support network's chapters provide something that bereaved parents and siblings can't get from the rest of the world: "unconditional love and understanding" (as its informal credo states) with no expiration date.

As one member told me, she knew that a Compassionate Friends meeting was the one place she could go and never hear the unintentionally accusing question, "How many years ago did you say your child died?"

Grief is not like an illness, to be fought and cured with medicine or chemotherapy and radiation. Generalizations can be made about human behavioral tendencies, and time lines can be drawn for predicted "healing," but each person's grieving process is unique.

Some people never "get better." And nobody survives grief unchanged.

As Stephanie Ericsson wrote in "Companion Through the Darkness," grief is "a tidal wave that overtakes you, smashes down upon you with unimaginable force, sweeps you up into its darkness, where you tumble and crash against unidentifiable surfaces only to be thrown out on an unknown beach, bruised, reshaped."

Or, as a man who lost his 7-year-old son once confided, "I'd always thought of myself as a happy man, but that's gone now. We have moments of happiness, some of them long and filled with laughter, but the sense of what is lost is never far away."

In her book, Stephanie Ericsson also warned:

"Grief makes what others think of you moot. It shears away the masks of normal life and forces brutal honesty out of your mouth before propriety can stop you. It shoves away friends and scares away so-called friends and rewrites your address book for you."

- Kathleen

Stand Up To Pediatric Cancer

2008-09-02T17:23:00.000-07:00

Steven is in this video that I found randomly on another site

September is National Childhood Cancer Awareness Month.

During this month, I will be writing on different topics related to my views about cancer and our children and the effects on families.

I'm going to start with Stand Up To Cancer, (SU2C) an initiative of the Entertainment Industry Foundation.

There will be a one-hour TV show / telethon this Friday evening at 8:00 PM that will air simultaneously on all three major TV networks: CBS, NBC, and ABC.

The goal is to raise private monies to be used to accelerate progress against cancer and directly impact patient care.

It's a worthy goal, the budget for cancer research has been cut every single year since 2003, as the rate of cancer increases. Better solutions are needed somehow.

The parents of several children we know with brain tumors sent in their stories and there is a possibility they will be mentioned on the show.

I took a good look at their site and while I like their general approach, I was very disappointed by a complete lack of representation for pediatric cancers, the emphasis for SU2C is adults.

I saw items on pancreatic and prostate and breast and colorectal cancer, all worthy causes, but they are not pediatric cancers.

In terms of numbers, the number one childhood cancer is leukemia. Number two is brain cancer.

SU2C's explanation of where the money goes

Below is SU2C's advisory committee.

Phillip A. Sharp, Ph.D., MIT
Research interests: Gene silencing through RNA interference
Arnold J. Levine, Ph.D., Institute for Advanced Study, Princeton
Research interests:
Brian J. Druker, M.D., OHSU
Research interests: Chronic myelogeous leukemia and gleevec
Julian Adams, Ph.D., CSO, Infinity Pharmaceuticals
Research interests: Multiple myeloma and Alzheimers
Elizabeth H. Blackburn, Ph.D, UCSF
Research interests: Understanding telomeres and telomerase
Raymond N. DuBois, M.D., Ph.D., MD Anderson, Executive VP
Research interests: Intestinal cancer
Richard B. Gaynor, M.D., VP Cancer Research, Eli Lilly
Research interests: Breast and colon cancer
Waun Ki Hong, M.D., MD Anderson
Research interests: Head and neck cancer, chemoprevention, retinoids
William G. Kaelin, Jr., M.D., Dana Farber Cancer Institute
Research interests: Functions of tumor suppressor proteins in retinoblastoma and von Hippel-Laundau syndrome
Richard D. Kolodner, Ph.D., UCSD
Research interests: Colon cancer, genetic recombination and repair
Ronald Levy, M.D., Stanford University
Research interests: Lymphocytes and Lymphoma
Tak W. Mak, Ph.D., Princess Margaret Hospital, Toronto
Research interests: Breast cancer
William G. Nelson V, M.D., Ph.D., Johns Hopkins
Research interests: Prostate cancer
Cecil B. Pickett, Ph.D., President of R&D, Biogen Idec
Research interests: The regulation of gene expression by oxidative stress.
Vicki L. Sato, Ph.D., Harvard Business School
Research interests: innovation and productivity as they relate to improved outcomes in biotechnology and pharmaceutical R&D.
Laura K. Shawver, Ph.D., CEO Phenomix Corp.
Research interests: Tyrosine kinase inhibiting drugs and antiangiogenesis
Ellen Sigal, Ph.D., Friends of Cancer Research, VA
Research interests: Cancer advocacy, Russian history
Joseph V. Simone, M.D., Pediatric Hem-Onc, Shands Cancer Center, FL
Research interests: Childhood leukemia and lymphoma
Samuel A. Wells, Jr., M.D., Professor of surgery, Washington University, MO
Research interests: Multiple Endocrine Neoplasia
James E. Williams, Jr., Intercultural Cancer Council, PA
Research interests: Policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial and ethnic minorities and medically underserved populations in the US.

Out of their All-Star Gang of 20, there is only one doctor with a pediatric specialty, Dr. Joseph Simone, M.D., who works in the department of pediatric Hematology-Oncology at Shands Cancer Center in Florida.

There is not a single neuro-oncologist or neurologist on board at all.

The treatment of brain cancer presents special challenges for a two main reasons-- one, it's the brain, and you can't just go in and remove the diseased bits without affecting some vital function, like maybe speech or vision or breathing. The second reason is that the brain protects itself from nasty chemicals and other things via a membrane called the blood-brain barrier (BBB).

Usually this is a good thing, but one consequence of the BBB is that it prevents chemotherapy drugs from reaching their target. One result of this is that when chemotherapy is given, it requires much higher doses to target tumors in the brain than elsewhere in the body.

What's really needed here are some completely novel approaches and out-of-the-box thinking.

Pharmaceutical companies are in business to make money, and they've hit it really big with drugs that lots of people use, like Viagra and high blood pressure medications and proton pump inhibitors like Nexium "the little purple pill" and asthma medications.

But if they were to come up with a really good drug that worked for brain cancer and nothing else, there's just not a lot of folks who are in the market, and so many of those that are there just keep dying. And the insurance companies don't want to pay for those great new medications like Avastin because they are expensive.

For the most part, brain cancers are equal opportunity killers, they don't ask for ID before they set up residence in a child's or a baby's brain.

But there are hosts of childhood brain tumors that don't occur in adults except very rarely. Brain cancers love young brains.

Kids don't pay taxes and they don't vote, and half the time their harried parents are too busy with the business of saving their child's life, their marriage and their own sanity to have time to read the papers or go the polls or write letters to their congressperson.

With very few exceptions, pharmaceutical companies test their drugs on adults before they test children, so it can be 2 years before a drug being used in adults is available for children.

From the SU2C's Where The Money Goes page, it says they will form "Dream Teams" to support the "required focused, intense, goal-directed, team-oriented attack on the cancer problem".

The focus of the Dream Teams is short-term patient benefit.

A worthy goal, but it seems nothing in pediatric brain tumor research is short term.

We'll be watching. I wish I wasn't so cynical and I hope I've got them wrong, but I am so disappointed to see kids unrepresented in such a major undertaking.

I hope they don't put our kids faces on the screen to sell cures for adults.

As for good organizations that target kids with brain tumors and other life-threatening illnesses, I suggest these:

SU2C, I applaud your efforts and your ability to command three major networks, but please don't forget our kids. Our kids need help, and this is their month. Prove me wrong.

- Kathleen

The End-of-Summer Blues

2008-08-24T13:26:00.000-07:00

Pulmonary testing

We're back from Memphis. Everything healthwise looked good. We're still waiting to hear from endocrine, his labs weren't back by the time we left.

Steven's oncologist took me aside alone on Tuesday, the day after his MRI, to tell me his MRI was clear. This good news was immediately followed by a really blunt discussion about Steven's future academic and vocational prospects, a discussion that left me in tears and that I just can't reconcile with what I see in him.

We arrived home late Thursday night to see that his STAR test results had arrived. He got a 484 in English and a 513 in Math (out of 600), placing him well into the advanced levels. Shouldn't college be at least a possibility for him if that's what he wants?

I'm trying to strike some sort of balance between what I see in Steven and what his doctor, who has seen first-hand the after-effects of radiation on hundreds of children, sees.

Parenting a child in this situation isn't easy. I want to push him to perform to the best of his abilities, and no more than that. But it seems the doctor and I have different views of what his abilities are.

School starts on Monday for Steven and Sean.

So much of what I had hoped to accomplish this summer hasn't come to pass, but I think I can still say we've had a great time (photos later).

- Kathleen

All Clear

2008-08-19T19:36:00.000-07:00

Practicing for the functional MRI

Steven completed his cognitive testing today, another three-plus hour marathon.

Then the oncology visit and results, everything was clear, for which we are so, so thankful.

Next was the functional MRI. First, Steven practices some exercises on a computer.

The scan begins

Afterward they put him into the MRI where he does those same exercises while he's being scanned. The MRI measures post-radiation white matter changes in the brain and they are trying to correlate white matter changes with cognitive deterioration.

Our friend Kevin is out of the hospital and getting ready for his final round of chemo on the same protocol as Steven. God willing, he will be going home to Michigan soon.

Steven's pterygium (cloudy area starting near his nose and covering part of his pupil) - click to enlarge

The oncologist today noticed that Steven had a pterygium in his right eye. We looked at her blankly, but I was a little shocked after seeing it that I could ever have missed it.

They are very uncommon in children, but Steven is always full of surprises.

Tomorrow we see the opthalmologist and test his hearing.

I'll write more tomorrow, for reasons I don't completely understand myself, I've been weepy since we got here and even the good MRI results haven't banished my bad mood.

So for tonight we'll try for a good sleep.

Many thanks to all of you who have prayed for us, held a good thought for us and supported us in so many different ways.

- Kathleen

A Milestone In Our Journey

2008-08-18T16:52:00.000-07:00

We're baaack...

Sometimes I feel selfish calling it "our" journey, because more than anything, it is his journey.

Steven and Kevin Saarela, 8 yr old brain tumor and in the same treatment that Steven did.

Memphis dry ribs at Corky's

When all is considered, he's the star of the show and I'm one of the groupies.

The new Chili's Care Center

Steven fighting his anxiety over the coming IV

September 9, 2008 will mark 5 years from the day Doug and I sat staring disbelievingly at the image of the glowing ball in Steven's head. There's nothing magic about that date, with Steven's sort of cancer they say to take the age of the patient at diagnosis, (9 years for Steven), add 9 months for gestation, and that if that much time passes with no recurrence, chances are it won't come back.

A new MRI nurse and no Elomax (numbing creme)

The IV is in and no tears!

But every year, every month, every day, every hour, every minute is a milestone.

Prepping for the scan

The new MRI has a prism so he can watch movies

Steven got his MRI today. Tomorrow we hear the results.

Steven chose to watch "A River Runs Through It"

The head frame is attached and in he goes

If everything is clear (please God), he will officially be considered by St. Jude to be a longterm survivor, he will be moved from E Clinic (neuro-oncology) to the ACT clinic (After Completion of Therapy), and we will go from 6-month to annual visits.

Measuring arm span

Measuring his height

This is one (of many) things we've been praying for and something that I, his mother of little faith, have never taken for granted.

Steven posed an Elvis Gumby on his chest

Closeup of the Elvis Gumby

We're here in Memphis until Thursday.

- Kathleen

Science Fair

2008-05-23T16:25:00.000-07:00

Happy Mother's Day!

2008-05-10T11:23:00.000-07:00

This reminds me of my own boys--

But I love them anyway and glad I am to have them.

Happy Mother's Day.

- Kathleen