I love it when you get mail. I guess no-one informed Mickey.

For me, that's okay. I like it when someone thinks you're alive.

Last night Jack, Mom and I were lucky enough to see an advance screening of a movie called "Up." It is a Disney Pixar movie and it comes out in theaters tomorrow. Of course when I see any movie before it comes out in theaters I think back to how you got to see Harry Potter and the Pokemon movie because of the nice people at the studios.

Up has a truly wonderful love story at its center. It also deals with loss. It made me think about the people who I love and who I've lossed. Which is another way of saying it made me think of you. Even though I was smiling and laughing for most of the movie, there were a bunch of times where a few tears started rolling down my cheeks.

And I wasn't the only one.

Without naming names, the other two people with me were affected the same way. Again, without naming names, the person who I was with who isn't Mom, was really moved. I think since he doesn't talk about you to anyone (like I talk to Mom or friends), sometimes his emotions will just burst through. It doesn't happen very often, but I think something like a movie can make that happen. That's why we have art - to help you think and help you feel. Sometimes it helps you "access" feelings you can't normally reach.

I'm glad we saw this movie. I'm sorry we saw it without you.

First-ever Japan Wish flight takes off for Disneyland

Sunday 21st December, 06:27 AM JST

American Airlines and Make-A-Wish Japan, the local office of the Make-A-Wish Foundation International, on Saturday sent Omoi Sendai, a junior high school student from Toyama Prefecture, off to Los Angeles on the inaugural Japan Wish flight. Omoi, who is battling a complex medical condition called Fanconi anemia, has had a long-standing dream of going to Disneyland in Anaheim, California.

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Omoi Sendai, center, and his family stand before a cake prior to their departure from Narita airport on Saturday.

Masami Yagi, president of Make-A-Wish Japan, said at a send-off reception, “Granting this wish of Omoi’s to go to Disneyland with his family brings the total number of wishes we have been able to grant over the years to 1,290. We are so happy for Omoi and hope he has a wonderful time.”

Upon Omoi’s arrival at the Los Angeles International Airport, he and his family will be welcomed by volunteers from the Something mAAgic Foundation, a non-profit organization made up of current and former American Airlines employees that support the Make-A-Wish Foundation as it creates magical memories for children with life-threatening medical conditions.

Omoi’s dream will come true as he enjoys spending time at Disneyland with his family and a volunteer escort from Make-A-Wish Japan. Omoi will return to Japan on Christmas Day.

An annual event since 1996, WishFlight sends families of children with life-threatening medical conditions to Orlando each fall to experience a week of fun at Give Kids The World Village and area theme parks. Since 1996, 270 children have participated in WishFlights and more than $1,000,000 in cash and in-kind donations has been raised by Something mAAgic to send children from Canada, Mexico, Europe, Latin America and the United States to Walt Disney World.

This flight is the first-ever Japan Wish Flight, a similar collaboration by the organizations listed below to make one of the dreams of a Japanese child facing difficult medical challenges come true.

Mom and I had dinner the other night with a new friend. He works at Disney. We spoke about you. He is someone, like our friend Hugh, who I think would have really wanted to know you.

I made this picture just now to send to him.

You were a big fan of Disney World. I think the hugs make that pretty obvious.

Remember how Uncle Bill gave you the medal he received for running in the Marine Corps Marathon. It seems that someone else figured out what a good idea that is. I still have that medal in my memory box of you that I have next to the bed.

The unbelievable thing about that medal was I think that was the time Bill ran the race without having trained. Some of his fellow Marines called him up after one of their group couldn't run (I think because he died tragically, but I need to check with Bill) and Bill jumped right in.

He, like you, is one of my heroes.

MADE OF METTLE

A marathoning doctor gives medals to patients struggling through much harder races.

By Sarah Lorge Butler

Photographs by Brett Kramer

PUBLISHED 09/02/2008

The day after he finished the 2003 Chicago Marathon, Steven Isenberg, M.D., a head and neck surgeon in Indianapolis, paid a visit to a colleague who was hospitalized. The two men were a study in contrasts. Dr. Isenberg, 58, was on a postrace high. Les Taylor, who had prostate cancer, lay flat on his back with tubes running in and out of him.

At a loss for words, Dr. Isenberg pulled his finishers' medal from his pocket and placed it around Taylor's neck. "I want you to have this," he said. "You are running a much more difficult marathon than the one I completed."

Before he died, Taylor told Dr. Isenberg how much he treasured the medal. Those words inspired Dr. Isenberg to start Medals4Mettle, a nonprofit organization that collects medals and donates them to people battling illnesses. As soon as the M4M Web site went live in 2005, runners from across the country responded. Not only recreational athletes, either: Olympic marathoner Brian Sell handed out his own medals at Dell's Children's Medical Center in Austin, Texas, in February.

"It's nice to know that someone is thinking of the kids and knows what they're doing is a very brave thing," says Melissa Sexton, a child life specialist at Riley Hospital in Indianapolis. One teen, she recalls, kept his medal hanging from his IV pole.

The adult recipients are fewer in number, but have a deeper appreciation for the sentiment behind the medals. Joann Hofer-Varela, of Westfield, Indiana, suffered a heart attack in 2004, at age 36, a week after the birth of her second child. Her cardiologist, Mary Norine Walsh, M.D., gave her a New York City Marathon medal that had been donated by M4M. "All I could do was sob," Hofer-Varela says. "It represented what I had gone through, and it represented somebody's sweat and hard work."

Dr. Walsh, medical director of the cardiac transplant program at St. Vincent Hospital in Indianapolis, hands out about five medals a year to patients who have traveled a particularly difficult road. "I say, 'I would like to give you this medal. It's my recognition of your struggle,'" she says. "Later, my patients have told me it meant the world to them to have their doctor acknowledge how hard their battle is." The experience inspired Dr. Walsh to take up running.

Hard-Earned Prize

By Dr. Isenberg's guess, M4M has collected and distributed more than 3,500 medals, thanks to the efforts of a core of nine volunteers. The group is headquartered in Dr. Isenberg's Indianapolis office, where volunteers take the medals, donated from events of different distances worldwide, and attach new M4M-branded ribbons before sending them to hospitals. Dr. Isenberg devotes at least 12 hours each week to M4M, around his medical practice and his training. Since that first marathon in 2003, he has completed about 20, with a personal best of 3:30. He plans to run Chicago again in October.

Some medals arrive with legacy cards, which detail the donor's reasons for giving away their prize. One anonymous donor attached a note to a 2008 Indianapolis Mini-Marathon medal that read: "The children who battle deadly diseases are far more deserving of this medal than I am. My son was a Riley kid who died of bone cancer. I've seen the courage of the kids at Riley, and they deserve to be honored and cured." A runner's medal might not be able to cure a disease, but as Dr. Isenberg has found, it can lift a spirit.

Medals to Spare?

Steven Isenberg, M.D., answers runners' most frequently asked questions about Medals4Mettle.

Q: How do I donate a medal?

A: "Visit medals4mettle.org for information. You can also download a legacy form and use it to explain why you've decided to donate your medal. Monetary donations are always appreciated. Our biggest cost is the new M4M ribbons."

Q: Does my medal need to be from a marathon?

A: "No. Someone's maximum distance they're capable of might be a 5-K or 10-K. It wouldn't be appropriate to say 'marathon only.' But I should note that the kids especially enjoy the Mickey Mouse and Donald Duck medals from the Walt Disney World Marathon and Half-Marathon."

Q: Do you accept unused medals from race directors?

A: "We don't take medals that haven't been earned because then the whole concept would be lost. Giving your medal is a way of saying, 'I know you're having a struggle more difficult than the one I just ran, and I'd like to express that.' It's a transference of spirit."

August 2, 2008 Road to recovery By KRISTIN DANLEY-GREINER Herald-Index Staff Writer With a stranger's blood now pumping through her body, Maddie Landwehr of Altoona - who had been living a nightmare every day - is now making strides toward returning to the vibrant, spunky Maddie that people know and love. After an uplifting trip to Disney World in Florida this spring that was granted by the Make A Wish Foundation, Maddie returned home to prepare herself for the special bone marrow transplant designed to cure her of a rare genetic blood disorder she was born with called Fanconi anemia. The disease causes bone marrow failure. "Words cannot describe how wonderful that trip was for Maddie," said Ernie Landwehr, Maddie's dad. "She got to wear a special badge and when her group walked up to a ride, they put her right on it. But she ran out of gas about five hours into it and had to quit and go home. The place where we stayed, you can't even imagine it. It's a 70-acre complex with over 100 villas, merry-go-rounds, clowns; it's a whole park. Maddie said she just wanted to stay there." Her medical treatments began May 28 at the Fairview Children's Hospital in Minnesota. The chemotherapy took a toll on her small body, but when she received her new blood through an IV drip bag, the transplant only took one hour and five minutes. Maddie's mom, Nancy, has spent more than three months at Maddie's side. "Maddie's had some real ups and downs," Ernie said. "She's as bald as could be now and ended up with extensive mouth sores after the treatment - she couldn't eat or talk for 20 or so days. She just wasn't our Maddie." In fact, Maddie became so unlike herself that her doctors worried she had lapsed into depression and were going to call in a psychiatrist. Maddie also contracted graft versus host disease, which is when her body didn't accept all of the blood at first, but now she's 100 percent grafted, Ernie said, meaning her body is full of donor blood and now RH+. Unfortunately, she's been on steroids to help fight whatever sparked the infection. Maddie has been taking more than a dozen pills daily, including a water retention medication to combat the steroids' side effects, plus blood pressure medication. She also has suffered from a bladder infection, underwent a colonoscopy and has battled serious blood sugar level fluctuations mimicking diabetes, as well as fevers and hives, a combination of which landed her back in the hospital after she first was discharged to stay at the Ronald McDonald House. "The downside to the steroids is what they do to her stomach and face - she doesn't look the same," Ernie said. Then Maddie's hip broke through her skin, Ernie said. "She's retaining so much water that when she sat down, it burst out of her skin," he said. "It came open about half an inch to begin with and now it's a big open sore and not until her body heals will it heal up." Fortunately for Maddie, her family has been able to visit her in the hospital and where she's staying now at the Ronald McDonald House, except when Nancy and Ernie's adult daughter Melissa's own daughter had her measles, mumps and rubella shots for kindergarten this summer. Because of Maddie's new and weakened immune system, she cannot be around anyone who has recently received live immunizations and should avoid large crowds of people. Even when Maddie leaves her germ-free apartment at the Ronald McDonald House where only her parents are allowed to be, she must wear a surgical mask to keep germs at bay. Due to the high risk of infection Maddie faces, her physicians do not believe she will be able to return to school until late January or early February, even if everything proceeds as planned. She also must remain at the hospital for at least 100 days, doctors say, and is just past the halfway point. She isn't allowed to be more than 30 minutes away from the hospital, because she's at risk of going into cardiac arrest. It can get quite boring recovering in the hospital, but friends, family and even strangers have sent Maddie care packages, cards, well wishes and e-mails to her Web site at www.carepages.com. "Even the mayor of Altoona and his wife sent Maddie a care package," Ernie said. "She's very appreciative of what everyone's done for her." Anyone wanting to send Maddie well wishes electronically can log on to her Web page at www.carepages.com. If you are not a user, you must establish an account first. Then search for her page under MadisonLandwehr. Also, Ernie and Nancy's adult daughter, Melissa Thomas, would like to organize a walkathon for Maddie. Anyone interested can contact her at jmjcthomas@hotmail.com.

Couple abandons plan for a 'saviour child'

Pamela Fayerman
Tuesday, May 13, 2008

METRO VANCOUVER - A Port Coquitlam couple trying to conceive a "saviour child" to supply stem cells for their son with leukemia have now abandoned the effort because the eight-year-old has relapsed and needs a more urgent - albeit mismatched - transplant.

Time has run out in more ways than one for Pam and Mike Obadia, both aged 47.

The couple made national headlines last month when The Vancouver Sun wrote about their desperate bid to boost the survival odds of their son by trying - against biological odds - to create a test-tube baby.

The baby's umbilical cord blood stem cells would be harvested at the time of birth and transplanted into their ill son, Benjamin.

Since the reproductive technology was not offered in B.C., the couple had planned on going to Chicago.

But during recent testing at B.C. Children's Hospital, the family learned that Benjamin had suffered the second relapse of his five-year battle with leukemia.

Now he's on a more aggressive chemotherapy regime and scheduled to get radiation, then a transplant in July.

Benjamin has been on an international registry for two years, but a matched donor has never been found for his unusual tissue type. So the transplant will consist of stem cells from umbilical cord blood of an anonymous source.

Dr. Geoff Cuvelier, a pediatric oncologist at the hospital who is not involved in the Obadia case, said about 10 such mismatched cord blood transplants are done each year at the hospital. The goal of such transplants is to boost the immune system of the relapsed patient so it can attack the residual cancer cells left in the body that chemotherapy doesn't kill.

Pam Obadia said she has been overwhelmed by the love and support from strangers and friends over what she and her husband had planned on doing.

"Although we have to abandon Pre-Implantation Genetic Diagnosis (PGD) because there isn't enough time to wait, we want everyone to know how much we appreciate their universal support," she said in an interview.

The primary purpose of PGD is to select eggs or embryos that are not affected by serious genetic, inherited diseases. But at some private reproductive technology clinics like the one in Chicago, the process is now also being used to find embryos that are a tissue match for an ailing sibling.

It is not offered at hospitals in B.C. because of cost, and ethical and moral concerns about whether it is right to conceive a child for the sake of another.

At B.C. Children's Hospital, parents of sick children are not informed the procedure exists as an option to pursue elsewhere; the Obadias heard about it from a friend.

The process to create a saviour child starts with in vitro fertilization, in which eggs and sperm are incubated in a laboratory to create several embryos that are then screened to determine which to select for implantation into the mother's uterus.

Pam Obadia's odds of getting pregnant were extremely low because of her age, and she admitted she was grasping for a miracle to save her son.

At last count, Benjamin had endured 311 courses of chemotherapy, 296 needles, 38 spinal taps, 16 blood transfusions and 15 bone marrow biopsies. But Pam said her son remains upbeat, to the point that when he saw her crying the other day, he begged her to stop because "'everything is going to be okay.'

"He's an amazing kid," said Pam, adding: "When we were on our way home from the hospital the other day, he actually thanked us for being there to support him. He is thrilled that our long-planned trip to Disneyland in June is still going to go ahead, thanks to the generosity of a friend who is donating a place for us to stay.

"I am still so frustrated that I didn't find out about PGD years ago when Benjamin first got leukemia," said Pam, adding that hospital doctors don't believe there is any onus on them to fully inform patients about options like saviour children.

Dr. Marcia Angell, former editor of the New England Journal of Medicine and a medical ethics expert at Harvard University, said in an interview she finds the hospital's position disturbing.

"I believe the parents' actions were not only ethical, but admirable. There are a lot worse reasons for bringing a child into the world than this one. The Obadias have already shown they are extraordinarily loving parents, and there is no reason to believe they would love a new baby any less than the children they have.

"The notion that somehow a saviour sibling would suffer psychologically is the rankest sort of speculation... The problem here is what I call busybody ethics. To justify their specialty, ethicists sometimes feel the need to wring their hands over everything -even something as clearcut as this," said Angell.

To follow Benjamin's cancer treatment, go to the family website: www.mobadia.ca.

Sun Health Issues Reporters

pfayerman@png.canwest.com

February 3, 2008

Carlson: 7-year-old survivor faces death without bone marrow donor

BY JOHN CARLSON
REGISTER COLUMNIST

The back door slammed, and perky, smiling Maddie Landwehr, home from school, ran straight into the living room and hugged her dad.

The 7-year-old girl gobbled down three chocolate chip mini-muffins, did a cartwheel and told her parents, again, that she wants to go to Disneyland.

Amazing, given what this child has gone through, what she endures every day, and what she faces.

"Maddie has had nine surgeries," said her dad, Ernie Landwehr.

"No," said Maddie. "Ten."

They counted. She was right. But that's only part of this child's story.

Maddie was 2 years old when she was adopted by Ernie and Nancy Landwehr of Altoona. It's when orphanage workers in India told them of the horror of how the girl's life began.

Born to an unwed, teenage mother, Maddie - whose full name is Madison Aditi Landwehr - literally was "thrown away" moments after her birth and left to die in a remote area of central India. Lying in the open, she was mauled by wild dogs. Her right buttock was devoured, as was her hip. That destroyed a growth plate, which allows a child's leg to grow properly.

She was near death when she was found and carried to a hospital, where doctors saved her life. She weighed only 4 pounds.

Four months later, she was taken to an orphanage in western India, and that's where she stayed for a year and a half until the Landwehrs brought her home to Iowa.

"It was terrible, unimaginable, but I guess that's obvious to anybody who hears the story," said Ernie, a college admissions official.

"I just know that when we saw her picture and then when we saw her with our own eyes, we knew that this is our little girl."

Which should be the beginning of a happy story. And, through all those surgeries to fix her leg and help her walk, a story that should bring a happy ending.

Not yet. Maybe not at all.

Ernie and Nancy learned last year that their happy, beautiful little girl has an inherited, rare blood disease called Fanconi anemia.

It prevents her red and white blood cells and platelets from reproducing as they should. People with the disease are likely to develop serious infections and cancer-related illnesses, particularly leukemia.

That means Maddie needs a bone marrow transplant to have a chance to survive. So far, no suitable donor has been found.

"We're told that any suitable donor will almost certainly have to be of Indian descent," said Nancy, a stay-at-home mom who with Ernie has three grown biological children. "There are a lot of people of Indian descent in Iowa and around the country, and we're trying to get the word out and encourage people to be tested."

Any healthy person between the ages of 18 and 60 is eligible for testing. Their blood cells are examined after a quick, painless swab of the cheek. Information from the swab is entered into a database, and a computer analysis determines if a person is a suitable donor.

The 2000 census, the most recent count of Iowans with a reliable breakdown by age and race, found 3,751 Asian Indians between ages 18 and 60 living in Iowa. It's likely that number is higher today.

The donor can come from anywhere - there are 6 million names on the worldwide bone marrow donor registry. Ernie and Nancy are certain that somebody, somewhere, can save their girl's life. It's just a matter of finding the person.

The thing is, while Maddie seems healthy - spend time with her and you'd never know she was sick - she can't wait long.

"She is very sick, and she definitely needs this bone marrow transplant," said Dr. Deborah Smith-Wright, a Des Moines native and a pediatrician at the Shriners Hospital for Children in Minneapolis, who has been caring for Maddie since 2005. "Spontaneous remissions are extremely rare in Fanconi anemia patients."

Smith-Wright said there are only about 1,000 cases of Fanconi anemia worldwide.

"Maddie has been through so much," Smith-Wright said. "The injuries, the infections, the treatments and now this. It's been a rough time for her, but she's a brave girl. She's a real favorite around this hospital."

Her first surgery was 3½ years ago and was an initial step in repairing her hip and lengthening her right leg, which was not growing as it should.

"The doctors in India did their best, I'm sure," Ernie said, "but doctors here told us she looked like she'd been sewn up in a hurry by a vet."

She was in a body cast for eight weeks after the first surgery in Minneapolis - the first of three such casts.

But her blood tests indicated a probable infection. Her white blood cell and platelet counts were at a critically low level.

"She wore a thick-soled shoe on her right foot to even out her legs," Nancy said. "It was so she could walk reasonably normally. She hated it. It was like wearing a brick."

The first leg-lengthening surgery was last March at the Shriners' hospital. The leg was attached to a crank-like device, which had to be turned four times a day for 45 days.

"Maddie is the one who turned the crank," Ernie said. "Her leg grew a little over 4 centimeters."

Other than a short time in a wheelchair, she never stopped walking. There were more infections, more drugs, more surgeries and injections, including the strong antibiotics she is given through a port in her chest three times a day.

"The Fanconi anemia, we never imagined such a thing was possible after all she'd gone through," said Ernie.

"She was sitting here one night, and all of a sudden her nose started bleeding. I put a towel over it. It wasn't long before the towel was soaked with blood. We had to call an ambulance. I couldn't believe she could have that much blood in her little body."

The infections, the bleeding and sporadic blood counts led to the tests that confirmed Fanconi anemia.

The orthopedic treatments have been done at the Shriners' hospital at no cost to the Landwehr family. The bone marrow transplant would be done at University of Minnesota Hospitals.

"My daddy tells me I have special blood," Maddie said, listening as her parents describe her illness and treatments. "He says I have angel's blood."

Friends have created a Web site, "helpmaddie.com," which tells her story and gives information on how to donate money to the family to help with travel expenses. The Web site also lists fundraising events to help the family, such as a Feb. 23 pancake breakfast in Maddie's honor at Clay Elementary School in Altoona, where she is a second-grader.

Maddie is small for her age - she weighs 30 pounds - and wears three little silver rings on her tiny fingers.

"I love jewelry," she said, giggling.

She wants to meet Faith Hill. She wants to ride a bike. She loves school, and her favorite things at Clay Elementary are, in order, recess, science and math.

When she grows up, she wants to become a doctor.

"I want to help sick people," she said.

But all of that depends upon finding a donor.

"It's not critical today," said Nancy. "She's getting along fine - today. Next week, it could become critical. Or next month. We just don't know."

"It's not a matter of if this kicks in," said Ernie. "It's a matter of when."

They have talked to some of the best doctors in the world and have done their own research. They know that Maddie could be expected to live only to the age of 12 without the bone marrow transplant. With it, she might well live into her 20s or 30s or longer. And by then, with ongoing research, who knows?

"What we are certain of is that she needs the transplant to save her life," Nancy said.

"It would be wonderful if everyone got themselves tested. The chances are you can save a life. If you're of Indian descent, for Maddie's sake, we ask that you please be screened as a potential donor."

Maddie understands - at least as much as a 7-year-old can comprehend such a thing - and she's ready to deal with whatever comes next.

"Somebody will help me," she said.

It would, everybody in this family knows, be the ultimate gift.

But Ernie said the greatest giver of all has been Maddie.

"I can't measure what she has done for us," said her dad. "I can't imagine what our lives would be like without her. She is the joy of our lives. She has courage and great humor and a spirit unlike any I've ever seen."

With the help of somebody they have never met - possibly somebody they never will meet - she will be in their family for a long time.

Columnist John Carlson can be reached at (515) 284-8204 or jcarlson@dmreg.com

When I read this story over the weekend it made me think back to when I wrote a proposal to the show While You Were Out that they come redo the basement as a cool classroom complete with a video link to your class at JPDS. You weren't allowed to be at school with your friends and I thought it would be a good way to keep you connected and make you happy.

This was before they did their Extreme Makeovers or whatever it is they do now for families in crisis or need. I had told them that it would make for more compelling TV than their normal shows which featured a wife remaking a favorite room for her husband while he was away playing golf for the weekend. Of course I never heard back from anyone.



Group builds sick kids space to heal
Sunday, December 2, 2007

By MICHAEL J. FEENEY
STAFF WRITER

PATERSON -- Antonio Reyes has spent much of his childhood battling serious illnesses in hospitals and has never had a space of his own.

But a group of local volunteers, dedicated to providing ailing children with an ideal bedroom, put the finishing touches on the 3-year-old's "healing space" at his city home on Saturday.

The scene at the home on Pennington Street was like watching the popular television show "Extreme Makeover."

About 10 volunteers worked together to put up blinds in the living room, organize toys in the basement and assemble beds in the two second-floor rooms. The group hoped to have everything done by Saturday night. The renovation had only begun about a week ago, but the planning began in October.

"We had a vision," said volunteer Linda Dumoff, whose son, Matt, and husband, Mark, founded Healing Spaces: "Straight from the Heart" in 2004 to give children who are fighting illnesses a room of their dreams. This is the third family they've helped.

Antonio has been "a fighter" since birth, said his mother, Desiree Janica, recalling that he was born almost three months premature, weighing only 1 pound 15 ounces. He suffers from Fanconi anemia, which leads to bone marrow failure.

His mother said he successfully received a bone marrow transplant on July 13, but recently became very ill and has been in intensive care at Hackensack University Medical Center for a respiratory illness and pneumonia. Earlier this year, he also broke his leg after falling off his sister's loft bed.

"He's doing OK," she said of Antonio's most recent hospital stay, which has gone on for more than two weeks.

However, Janica said he's often at the hospital because Fanconi anemia is treated like cancer and he has been given radiation and chemotherapy, which caused all of his hair to fall out.

Antonio was scheduled to check out his new room today, but his sickness has caused his return home to be delayed for about two weeks, said his mother in a phone interview from the hospital on Saturday. His stay in the hospital also caused the postponement of a trip to Disney World, which was granted by the Make-A-Wish Foundation.

"We were supposed to be in Florida," Janica said. "He knows he's getting a room. He says, 'I'm getting a Yankee bed.' "

Antonio's sports-inspired room screams happiness with freshly painted bright yellow walls, hard-wood floors, a comfy wood bed and matching dresser. The cornice over the window is made of navy blue and white fabric, in honor of his favorite baseball team, the New York Yankees. The custom-made cornice also serves as a display for two autographed baseballs from Yankee players. Chien-Ming Wang, Bobby Abreu, Ron Villone and Edwar Ramirez visited him at the hospital.

His bed is covered with a sports-themed comforter and sheets to match the custom-made ceiling fan shipped in from Florida with decals of baseballs, footballs and soccer balls on the blades.

One of the highlights of the room is the painting of the sun, which has a chalkboard center, allowing Antonio to live every kid's dream of writing on the wall.

Joyce Grabow, a Wayne interior decorator, worked on her first project with Healing Spaces after seeing an advertisement in a local newspaper.

She said she started by interviewing Antonio, who was wearing a Yankees outfit, to find out his interests and favorite things.

"I thought I would run with the sports theme," said Grabow, who decided on the yellow walls for his room because it's a "healing color" and a "happy color."

But, this family really touched the Dumoffs of Wayne and they decided to do a little more than just Antonio's room. The project expanded to tidy up the living room, basement, kitchen and a room for two his two sisters, which also received a drastic overhaul. His sisters, 18-year-old Shardee and 15-year-old Destiny, who gave up her room for her brother, will share a revamped room with pink walls, new furniture and a remodeled closet.

"I feel special because they are doing a little more than they would do a normal basis," said Janica. "I wish I could do something back to return the favor. I just thank them so much. Nobody has ever done anything for me. They are a blessing."

Mark Dumoff said the idea for the non-profit organization came to them while flying back from a spring break ski trip. He and his son read an article in a magazine, where a similar project was done for a child with cancer.

The article and photos of a bald child with a beaming smile inspired them to do something.

The Dumoffs got in touch with Tomorrows Children Institute for Cancer and Blood Disorders at Hackensack University Medical Center, worked out an agreement to meet families with children suffering from serious illnesses and the rest is history.

"The most important thing [for the child] is bringing healing to the home," said Mark Dumoff. "We try to create a very personal space."

Matt Dumoff, a sophomore at Montclair Kimberley Academy and co-founder of the organization, gathered volunteers from his school, Wayne Hills High School, and Tenafly High School along with family members and friends to complete the makeovers.

He described completing his first project in 2005 as "really emotional for everyone. It was an amazing experience. Your heart just stops. Once we did the first one, I just wanted it to grow."

The Dumoffs said they have been able to complete the life-changing projects by receiving donations from local businesses in Passaic and Bergen counties, including Sharp Electronics of Mahwah, which donated a flat-screen TV and air purifier for Antonio's room.

Mark Dumoff, who hopes to someday take this project around the country, summed up the experience: "The love they give to us is priceless. It's our honor. We are just a bunch of ordinary people trying to do something extraordinary for someone else."

E-mail: feeney@northjersey.com


And then I saw this today. How incredibly sad. I am sure Antonio was Dr. Gilio's patient. He must be devastated. Aside from the pain of their son's death, I wonder how much harder it is going to be to have that room in the house. What do you do with that?



Sick boy never sees 'Yankee room'
Monday, December 3, 2007

By BARBARA WILLIAMS
STAFF WRITER

Antonio Reyes will never get to see his new Yankees bedroom.

The Paterson boy, just shy of his fourth birthday, died Sunday morning, succumbing to complications from Fanconi anemia, a chronic illness that leads to bone marrow failure, said his mother, Desiree Janica.

Antonio was to be the recipient of a room designed and created by 10 volunteers from the non-profit group Healing Spaces. The dream bedroom, complete with wood bed and matching dresser, sports-themed comforter and sheets, and bright yellow walls, was finished Saturday.

The makeover was the subject of a feature in The Record on Sunday.

Initially, Antonio was supposed to see his room for the first time on Sunday. But his two-week battle with pneumonia and a respiratory illness that had him in the intensive care unit at Hackensack University Medical Center was dragging on and doctors told his family he would probably need another two weeks to recover.

"He was happy, just playing the guitar Saturday night," Janica said. "Then he looked at his dad and said, 'I love you' and that was it. They worked on him for 12 hours, but his body was just too weak."

Janica said Antonio died about 11:45 a.m. He would have turned 4 on Dec. 30.

Fanconi anemia is considered primarily a blood disease, but it can affect all systems of the body. Many patients eventually develop leukemia or some type of cancer. A successful bone marrow transplant cures the blood problem, but patients must still have regular examinations to watch for signs of cancer.

Treatments for FA symptoms such as bleeding and infections include transfusions or antibiotics. But patients frequently suffer with fatigue, shortness of breath, chest pain or dizziness and must see a multitude of doctors.

Antonio, whom his mother described as "a fighter," endured a successful bone marrow transplant on July 13, but he has been in and out of hospitals since birth, when he arrived almost three months early and weighed only 1 pound 15 ounces.

Regardless of the discomfort and pain from his illness, Antonio didn't complain much, Janica said. Rather, he was frequently "the life of the party. He was always the center of attention. Always happy. And always wearing his Yankee cap," she said.

Only hours after Antonio died, Janica entered her house for the first time since the renovations were completed.

In addition to her son's room, the group completely renovated a room for Antonio's sisters, and touched up the family's living room, basement and kitchen.

"It's just beautiful -- they did such a fantastic job," Janica said. "He would have loved it. He was really looking forward to seeing his Yankee room. Now at least I'll have somewhere to go to be near him."

This is the third family Healing Spaces had helped in North Jersey since 2005. Started by Wayne resident Mark Dumoff and his son, Matt, the group strives to give children dealing with serious, chronic illnesses a room of their dreams.

On Sunday evening, Mark Dumoff said they were shocked when they heard about Antonio's death.

But he said he hopes that the space they provided for Antonio's family will help them "get through this difficult time.

"Our prayer is that the healing we brought into this home extends to them during this difficult time and gives them the resolve and strength to go on."

E-mail: williamsb@northjersey.com

We are around a lot of people who have survived. It is nice and very hard all at the same time. While we are happy for those people and their families, it is a constant reminder that you didn't make it.

This weekend Mom and I went to a the Bat Mitzvah of twin girls whose mom we know well. One of the girls was a patient at Georgetown a few years back, and she is okay now. Her mom has been helping Hope for Henry Foundation by coordinating events and working with hospitals and all that kind of stuff. She is great.

They have had an extremely hard life, so it was especially nice for them to be able to celebrate a Bat Mitzvah.

On Sunday, Joe and I went out to the cemetery. It was very busy out there. It looked like they were having two funerals and a lot of people were just visiting their loved ones.

Joe said that he remembered you picking him up once. He said he thought it was at Disney World.

When we were getting ready to leave, I knelt down and kissed your headstone like I always do. Then Joe decided he'd do it too. As we were getting ready for school this morning, Joe told Mom this morning that he kissed you.

The reason I was going through the bin from the garage was to find stuff from the 1970s when I went to camp. A friend and I are trying to get in touch with everyone we went to camp with and we may have a reunion. That should be fun.

One of the things I found was an autograph book, which is a lot like your Disney autograph book. Instead of Buzz, Woody, Chip and Dale, I have some nice notes from people who went to camp with me. Here is one from my counselor who said some really nice things. Interestingly, I remember almost getting kicked out of camp one year. Maybe when we have a reunion, someone will fill me in on what happened.



On Friday night the new Harry Potter book comes out. We'll be waiting on line at midnight to get the books to bring to the hospital on Saturday morning. Hope for Henry is giving books to kids at Georgetown, Hackensack, Fairview and Aunt Jen and Hannah are bringing them to kids at St. Louis Children's Hospital.

After the Harry Potter party at Georgetown, we jump in the car to drive up to Massachusetts to pick up Jack at Camp Ramah. Last year we went to the Basketball Hall of Fame and Fenway Park for a Yankees/Red Sox game after we got Jack. Not sure we'll have time this year.

A while ago I told you about the series they run on ESPN where they Make a Wish for someone with their favorite athlete.

It's back.

They had one on yesterday with a kid meeting his hero, David Ortiz.

Joe and I were watching it while I was making him dinner. I was trying to explain to him what it was all about and he looked at me funny 'cause I was crying as I was talking.

I reminded Joe that you met Big Papi when he was on the Twins. He gave you a bat that I had signed last year when he visited XM. He gave the kid in the ESPN Make A Wish story a bat too.

Here is a wonderul article about a girl who has FA and raises money so other kids can have their wishes granted. She is a Super Hero!



Helping make WISHES

Friday, June 22, 2007

By Stu Woo

Journal Staff Writer

WARWICK hen she was 6 years old, Meaghan Spillane sat in the living room of her parents’ quaint, one-story house and wished for a trip to Disney World.

“She wanted to meet the princesses,” her mother, Patricia, said.

Two representatives of the Make-A-Wish Foundation nodded and smiled, and a few months later, Meaghan, who was suffering from a rare genetic disorder, was off to Florida with her parents.

Seven years later, Meaghan doesn’t really remember the trip or even making the wish. There were some princesses and a parade, she said, but the specifics are hazy. What she remembers clearly is the feeling of exhilaration she felt the entire week.

The feeling was so powerful that Meaghan decided she had to give back to Make-A-Wish.

So last summer she sent letters to, and visited, more than 200 businesses and individuals — all by herself — and raised $3,100 for the charity.

“I was surprised — she’s usually pretty shy. She approached people by herself,” said her father, Steven. “I just drove.”

For her efforts, she was named Rhode Island’s top middle-school volunteer by the Prudential Spirit of Community Awards earlier this year. Last month, she attended a ceremony in Washington, D.C., where football star Peyton Manning congratulated her and 101 other top youth volunteers from around the nation.

But Meaghan, now a healthy 13-year-old, is not done with philanthropy. Though she is busy with friends and preparing to enter Pilgrim High School this fall (but only after reading the new Harry Potter book), she’s recruited her friends for another round of fundraising this summer.

“I just really wanted to give back to them because they helped me when I was little,” she said. “I wanted to help another kid so they can experience what I experienced.”

Her goal?

“I want to raise more money than last year,” she said.

Those close to her have no doubt she’ll do just that.

“She’s a great salesperson,” said Diana L. Hackney, president and chief executive of the state’s Make-A-Wish chapter. Her personal story, Hackney added, makes her irresistible to potential donors.

“How can you say no?” she asked.

IT WAS ACTUALLY during a previous trip to Disney World, when Meaghan was 4, that her parents first realized something was wrong.

Meaghan, an only child, was getting out of the pool when her parents noticed bruises all over her body. When the Spillanes returned home, they took her to her family physician, who referred them to Hasbro Children’s Hospital, in Providence. There, noted pediatrician Dr. Edwin N. Forman saw Meaghan. The family knew something was wrong when Forman walked into the waiting room trailed by a team of doctors.

Forman told them Meaghan had Fanconi anemia, a life-threatening genetic disorder.

“I was devastated,” said Steven, Meaghan’s father. “To tell your 4-year-old daughter that she’s sick and that there’s no cure . . . ”

Forman, who still treats Meaghan, said Fanconi anemia is rare. Both parents must carry the gene, and even so, there is only a one-in-four chance that a mother will give birth to a child with the disease.

It can be life-threatening. The main problem Fanconi anemia sufferers have is that they can develop aplastic anemia, which occurs 90 percent of the time, or leukemia, which occurs 12 percent of the time. Both are potentially fatal but can be cured by bone-marrow transplants; but bone marrow transplants would be a last resort, Forman said.

“You’re living on thin ice that might break, or under the sword of Damocles, as they say,” Forman said.

Fanconi anemia sufferers also have a much lower white-blood cell, hemoglobin and platelet count than that of a healthy person, which makes them much more susceptible to spontaneous hemorrhaging and bruising, Forman said. As a result, Meaghan had to be careful on the playground and couldn’t play contact sports.

“I work for Chuck E. Cheese’s, and to see all those kids running around and to see kids doing what she can’t do” is heartbreaking, Steven said.

Patricia quit working full time to take Meaghan on her frequent trips to the hospital. But over the next few years, Meaghan’s blood count began rising for no explicable reason, Forman said. For example, in her last checkup — now required only every three months — she had a platelet count of 120,000 per cubic millimeter — twice as high as it had been five or six years ago. (A normal platelet count is 150,000 per cubic millimeter.) Her white-blood cell and hemoglobin count have been approaching normal, too. Though those numbers could fall any time, Forman is confident they will stay up. She is still in some danger of aplastic anemia or a cancer developing, he added, but she also has a reasonable chance of having a normal lifespan.

Meaghan said she has never been worried.

“I have never been afraid of it,” she said.

Meaghan is able to do everything a 13-year-old can do, except play contact sports. She has found an outlet for her energy in dance. She dances a couple of times a week, and earlier this month she showed off her moves at her dance school’s annual concert. Her parents beamed as she bounced and swayed to music from Mary Poppins, Copacabana and Hairspray.

“I can throw all my energy into it,” Meaghan said. “It’s just really fun.”

FORMAN didn’t know that Meaghan had been honored for her volunteer work, but he wasn’t surprised.

“You might say she’s unlucky to have this condition,” he said, “but she’s lucky to have these parents.” And about her volunteer work, he added: “Sometimes a challenge stimulates a person to rise above it and persevere.”

swoo@projo.com

BACK TO BEING BRIA: 5-year-old puts marrow transplant behind her

'Life's 100% better now'

June 20, 2007

BY AMBER HUNT

FREE PRESS STAFF WRITER

With her shy eyes looking at the floor, Bria Banks didn't smile when given a shiny pink bicycle.

Or when handed a gift bag full of toys.

Or when shown the oversize novelty check promising a free trip to Disney World.

The first thing that got 5-year-old Bria to smile at a luncheon in her honor Thursday was a simple blue balloon, which she batted around as she began to giggle.

She was all smiles after that.

That's when it became clear: Bria, who just six months ago was so sick with aplastic anemia and Fanconi anemia that she would have died without a bone marrow transplant, is a little kid again.

And so is her 7-year-old brother, Brandon -- her marrow donor.

"Life's 100% better now," said Twan Banks, Bria and Brandon's father. "The family's all together."

Last November, Bria went to Cincinnati to get the transplant and spend her recovery time. Her mother, LaTisha Lockett, stayed with her.

Meanwhile, Banks stayed with the couple's two other children -- Brandon and 1-year-old Brielle -- at the home of Lockett's mother in Detroit.

"It was hard having half the family here and half of it there," Banks said.

Bria was given the bike, toys and trip Thursday by the Olympic Steel Co.'s Detroit division.

The company adopted the Bankses as a Make-A-Wish family for the holiday season and bought the gifts with donations that kept spilling in after Christmas.

"It's nice to take time to slow down and remember what's really important in life," said Michael Cedoz, the division's general manager.

But for the Bankses, the adoption went far beyond Christmas. The children's tale -- of an older brother helping save his little sister's life -- touched employees, Cedoz said.

"We got to help and share some of our blessings," he said.

Bria's diagnosis came in September. Both anemias are rare blood disorders that attack the bone marrow.

The transplant was no easy procedure as Bria was allergic to some of the medications and had two seizures.

Doctors had to revive her after she quit breathing. An MRI revealed minor brain damage from the temporary lack of oxygen.

After spending about four months recovering in Cincinnati, Bria came back home to Detroit. She takes medication daily to suppress her immune system so her body won't reject the foreign marrow.

Other than that, her family says, life for Bria is nearly back to normal.

And, after her initial shyness wore off, that's how it appeared Thursday.

Wearing a yellow-and-pink Dora the Explorer outfit -- her head, once bald from chemotherapy, now covered in wispy black hair -- she quietly sat at the luncheon and gobbled down pasta.

But when Brandon and Brielle started batting around those balloons, she slowly got up and joined in. And then she smiled.

"I knew you had it in you," her mother said with a laugh. "Where were you hiding?"

Contact AMBER HUNT at 313-222-2708 or alhunt@freepress.com.

Copyright © 2007 Detroit Free Press Inc.

Sorry I haven't written, but know I have been thinking about you constantly.

These are pictures from Sunday when we went sledding at Battery Kemble Park. It is the best sledding in Washington. What was weird was I flew to Los Angeles just a few hours after sledding, so by the evening I was somewhere warm. I just got back this morning, and tomorrow morning I leave for New York.

I've told you that when I travel I have a lot of time to think of you. Now I watch movies of you on my iPod. I also watch a lot of my favorite TV shows which I record on TiVo and movies. I am reading this biography of Walt Disney and watching some of the old cartoons and animated films, like Fantasia, Snow White and Dumbo. I watched Iron Giant on my way to California. I love that movie. "Rock." "Tree." I loved watching with you. Iron Giant isn't a Disney movie, but the deer scene in it is purposely like what happens in Bambi. Do you remember how you got an Iron Giant toy robot at the Make A Wish event at the Willard Hotel.





When I was in the airport waiting for my plane, I ran into a very old friend of mine, Kathy, who grew up across the street from me. We hadn't seen each other in forever. She was on her way to Zurich, Switzerland which is in Europe. Mommy goes to China next month and that is even farther away. I told Kathy about you and you dying, and it was hard not to get emotional. I just did it as fast as I could.

Kathy was really sweet. She told me that for her daughter's birthday everyone came with Teddy Bears for kids in the hospital instead of bringing presents. Isn't that great. I liked seeing her and catching up on old times. I have been in touch with a lot of my high school friends lately, which has been really nice.

I love you.

Kabir is a kid who Dr. Shad was treating at Georgetown. The Hope for Henry Foundation gave him the Harry Potter books and Disney videos. I also loaded up for him a video iPod with some Disney movies and Harry Potter audio books. I hope he is using that on his flight back to India.

I have a lot of pictures of him. I will put some up on here.

This is a very sad story.



Teen Leaves 'His Only Hope' Behind in U.S.

After 20 Months, 14-Year-Old With Leukemia Returns Home, Saying No More Chemotherapy or Bone Marrow Transplants

By Susan Levine
Washington Post Staff Writer
Thursday, January 11, 2007; B01

They had spent a tiring weekend boxing up his Harry Potter books, his Disney videos, the games that had helped sustain 14-year-old Kabir Sekhri in this foreign land. And as his mother and father checked off their final packing details, so did Kabir's doctor. Her list included sterile dressing kits and needles, gamma globulin and antibiotics, methadone for pain -- enough to last him until spring, she had decided.

If only she could guarantee that his cancer would allow him that much time.

These were not the preparations anyone had envisioned when Kabir and his parents, Vikram and Sonia Sekhri, came to Washington from New Delhi almost 20 months ago. They had hoped for a triumphant return to India, a declaration of victory marked by the full recovery of Kabir's health, animated smile and thick, dark hair.

Instead, when the family arrived at Dulles International Airport late Tuesday afternoon, a frail-looking Kabir rode in a wheelchair. A navy knit cap concealed the damage wrought by chemotherapy. His leukemia had kept coming back with more and more vengeance until he unequivocally declared that he was done.

It was a wrenching decision, not only for his parents but for his oncologist, Aziza Shad, who had led his care at Georgetown University Hospital. Yet it was a decision they all felt compelled to honor.

The victory now was simply that he was there at the airport, stable enough medically to endure two long flights halfway around the world. Shad bent low to ask Kabir how he was feeling. She would be traveling the more than 9,000 miles with him.

"I made a promise I would get him home, and I need to stick to my promise," she said.

The journey on which they had embarked was not all that different from the journey many families take. Still, something about Kabir's gentle, uncomplaining manner and his extraordinary distance from home prompted the hospital staff and other patients and parents to embrace him in a singular way. The Sekhris reciprocated. And somehow, despite all the heartache, his mother found blessings. "God's been very kind," she'd say.

Kabir was 11 when he first became ill, and the doctors initially attributed his aches, fatigue and swollen lymph nodes to an infection. When his symptoms didn't respond to the usual medicine, they looked further. The correct diagnosis -- of T-cell acute lymphoblastic leukemia -- came the same week that Kabir's grandfather succumbed to throat cancer after years of grueling treatment. "That was a tender moment for us because we had seen all the treatment fail," Kabir's father recalled. "We thought, 'How can a child go through this?' "

The Sekhris quickly learned. Kabir's particular disease assaults children more than adults, especially older boys, and it carries a poorer prognosis than other pediatric cancers. Though his body responded well enough to the early chemotherapy to put him in remission, he had not completed the full regimen when he relapsed.

"If you really want to do something for him, take him to America," their oncologist in India advised. The newest drugs were available in the United States, as were the best centers for the bone marrow transplant that probably would be needed to save his life. As his mother remembers, "We were told this was his only hope."

They boarded a plane in May 2005, leaving behind Vikram's leather goods business and everything Kabir knew: his beloved sister and the aunts, uncles and cousins who make up the Sekhris' close-knit extended family, the friends he had played with his entire childhood, the dusty, teeming city of Delhi. A relative in Falls Church had contacted Shad, head of the pediatric oncology division at Georgetown's Lombardi Cancer Center. Would she evaluate his case? Did she think he had a chance?

Yes, she did.

Four months of highly aggressive chemotherapy drugs ravaged Kabir but pushed his body into a second remission that made him a candidate for a bone marrow transplant. The perfect donor: his 16-year-old sister, Ridhima. She flew from India, and the family traveled to Duke University Medical Center for the procedure. The graft took well enough that when Kabir returned to Washington in early 2006, he was out of the hospital far more than in it, giving him a chance at memories not integrally tied to pain.

He went to New York, visiting the Statue of Liberty and gawking at Times Square. He also became an enthusiastic camper at a National Institutes of Health program for children battling cancer, canoeing and riding horses and even trying fencing.

"I want to come back from India every year for this camp!" he exclaimed upon his return.

The Sekhris started counting the days to the first anniversary of Kabir's transplant. By September, it seemed likely that they would make it, which would mean that Kabir would be able to be fly to India in time for a cousin's wedding celebration. He'd already bought new clothes.

He never wore them, however. The one-year checkup at Duke revealed a second relapse. The news was shattering. "Everything came to a standstill," his father said. In an instant, wedding travel became impossible, as did his son's greatest hope: to tell everyone back home that he at last was well.

Kabir was readmitted to Georgetown, and the weeks that followed deteriorated in a horrific downward spiral. He rejected any talk of another transplant but acquiesced to Shad's entreaties for one final attempt at chemo. She tried different toxins and combinations as her patient grew ever weaker, wracked by days of extreme fevers, numbness and bleeding. He stopped eating and virtually stopped communicating. When he did talk, he'd say plaintively, in a wispy voice made almost childlike by the drugs: "I just want to go home." Shad feared he'd never leave the hospital.

But just after Christmas, after the final drug in Western medicine's arsenal, a bone marrow biopsy showed the unexpected -- a partial remission. No matter, Kabir reminded her; he'd said he was finished. But Shad, who has a son just one year younger, still is struggling with that. "All I know is that this child gave it his best," she reflected late last week. "He gave it again and again and again and again."

On the afternoon of his departure, the staff at the Lombardi Center threw the Sekhris a cake-and-tears send-off. Then the family and Shad headed to Dulles. Kabir might have wished he'd seen more of America. "I would have liked to have gone to Disney World," he admitted. Not this trip.

His small entourage proceeded to a secluded alcove of an airport lounge. Kabir snacked on french fries, glimpsed at long last the swirling white magic of a brief snow shower and fell asleep under the handmade quilt given to him at the hospital.

"It's time," his mother quietly roused him. The teenager sat up in an instant and readjusted his navy knit cap. And as his parents followed close behind, an attendant wheeled him the final distance down the corridor to gate 32, through the last checkpoint and onto the plane.

He never looked back.