Eulogy for a Princess

Regina's Memorial Service Slideshow

View all

Get your own

---

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

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...

• Keep Regina's candles burning
• Regina's Obituary
• Regina's Memorial Fund

- Kathleen

Friends In Need Of Prayer

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

Update On Regina And Ellen

Regina started high dose chemotherapy on Monday July 9 in an attempt to slow or stop the growth of the dozens of aggressive, fast-growing tumors in her little head.

The weekend before she was admitted to the hospital for chemo, she went to Disneyland and some friends threw her a princess party, complete with princess dresses, jewelry, makeup, and princesses Cinderella and Aurora.

It was almost a perfect party for all those 7-year old girls, except for one uninvited guest.

Regina finished her first cycle of chemotherapy, and had an MRI August 2nd. There seems to be agreement among the doctors there that the scan shows improvement and some shrinkage in Regina's many tumors and Regina tolerated the chemotherapy relatively well, so she is starting another cycle this week.

Our friend Ellen, whom we met in Winnipeg when we went to see the polar bears in Churchill in 2005, is not doing well.

A few months ago I got a few people together and we folded over 1000 origami cranes for Ellen, it was a show of love and support for Ellen, who is loved by so many. There are photos and more information about the cranes here.

Ellen was just moved to a hospice care facility yesterday, she is sleeping most of the time, her husband Curtis at her side.

We are very much saddened by Ellen's decline.

We returned from vacation Sunday night. I'll post photos from our trip soon.

- Kathleen

Celebrating Regina: The Path Of Least Regrets

Steven and Regina and our dog Buddy

Our friend Regina is home from the hospital after her brain surgery. She looks great.

We brought Buddy, our puppy, who liked going down the slides.

Her family and friends put on a party for her Sunday. It couldn't have been a nicer day.

Regina took Buddy down the slide

We brought Buddy with us. We found out he loves slides. He was very friendly to all the little kids that crowded around and petted him.

Sean waiting for his balloon sword

There were clowns and balloon animals. People brought healthy food and snacks to eat.

Everyone signed Regina's poster

Regina's mom Diana gave a talk a few months ago on behalf of St. Jude to a convention of Gymboree employees. Somehow the Gymboree people heard about Regina's relapse and Gymboree stores in Scotland and England sent 200 pink and white balloons to her party.

Regina's younger brother Gabriel turned 6 on June 22nd. Regina had brain surgery that day, so his party was cancelled.

Regina's mom Diana

We sang Happy Birthday to Gabriel. Balloons were distributed.

Regina's mom Diana spoke, and we released the balloons, which represented our prayers and positive thoughts for Regina. Watching those pink and white balloons soar into the clear blue sky was a magical moment.

After much deliberation, Regina's parents have decided to have her start high dose chemotherapy at Children's Hospital Los Angeles as soon as Regina's neurosurgeon gives the go-ahead. First her incision must heal, it will probably be next week that she starts. This will be a custom treatment protocol designed just for Regina.

If the chemotherapy shrinks the tumors (and this is very much not a given), they may be able to either do another surgery or use radiosurgery to further remove the mass of tumors in her brain.

They made a difficult decision that isn't supported by some of their doctors, and there are no guarantees of any sort of success.

They need prayers and positive thoughts and all the support that their friends can give them.

Regina and her dad, Nick

There is no right or wrong answer. Sometimes the best we can do is to choose the path of least regrets.

Godspeed, Regina. You go.

- 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