Caring jesters

Thursday, August 28, 2008

BY BOB GROVES

STAFF WRITER

Ashley Wingo walked into the hospital as a patient today but was soon turned into a giggling “pineapple head.”

DAVID BERGELAND / STAFF

Brian McNelis painting the face of Lake Hopatcong's Ashley Wingo, 6, to look like a pineapple.

At least that’s what Ashlee, 6, looked like when Brian McNelis finished painting her face yellow, green and orange during a Carnival Day for pediatric patients at Hackensack University Medical Center.

McNelis was one of several entertainers at the event sponsored by the Hope for Henry Foundation of Washington, D.C. Dozens of children were treated to games, juggling, candy and magic tricks, at the Don Imus WFAN Pediatric Center for Tomorrows Children and the Joseph M. Sanzari Children’s Hospital at Hackensack.

“You look beautiful,” McNelis told the chuckling child, who has leukemia.

The foundation was established in honor of Henry Strongin Goldberg, a Washington boy who died in 2003 at age 7 after a lifelong battle with Fanconi anemia, a rare inherited failure of the bone marrow. Henry made many trips to Hackensack for treatment, said his mother, Lauri Strongin.

DAVID BERGELAND / STAFF

Sarah Wingo, 9, of Lake Hopatcong, helping out Josh Edelman during his juggling act.

“Hackensack is known for its expertise in blood diseases,” Strongin said. “If you’re in the mid-Atlantic region, you’re going to come here.”

Henry was a resilient child who never thought of himself as sick, but focused on trying to get better, said Strongin, who the founded organization. Hope for Henry has staged events at Hackensack for the past five years.

“He was an amazing kid,” Strongin said of her son. “He had incredible bravery, a positive attitude, a sense of humor.”

“This is more important than all the money gigs you do,” said McNelis, 45, a Washington clown and actor, who has performed Shakespeare. “Everybody gets a chance to give back.”

Sachi Tejani of Rutherford is only 6, but she has already given something back. Earlier this month, she donated bone marrow to her brother, Neelcq, 8, a patient at Hackensack who has lymphoma. Today,  Sachi was watching Doug Young, a magician, perform magic tricks.

“You have to treat them as just kids,” said Young, 36, who wore an electric blue double-breasted jacket. “They have so much love and support around them,” he said. “That really helps.”

E-mail: groves@northjersey.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

This is a video from the Super Hero party that we had a few weeks ago at Georgetown. Hackensack and Minnesota had parties too. The party was in the Lombardi clinic, but this movie is from upstairs on the 5th floor. We took the party to the kids who were in isolation and couldn't come to clinic.





"Henry's spirit will live on."

We went out to the cemetery on Sunday. The weather was really nice. We visited Zack Klein, who is so close to you now. I tried to help Zack's mom and dad get something special on his headstone. Unfortunately, it isn't going to happen. I can understand why, but it is still a disappointment.

The next thing that I am trying to make happen is making sure Molly and her mom meet Jon Bon Jovi. That should happen in July. I cannot fail. I'll keep you posted.

I have been spending a lot of time organizing our pictures. There is (are?) a ton. Which is good. I am going to make a big "Henry at St. Michaels" photo book to put out there. I am going to match pictures of you taken in St. Michaels with nice pictures of birds and trees and things that we've taken out there.

Last week was a tough Henry week. Mom and I spent a lot of time thinking of you and crying. Mom rewrote one of the chapters of her book and it is great. It is about you and Bella. All that came from nowhere. I am glad it happened.

I just finished reading a book, The Innocent, written by this guy Harlan Coben. His books are mysteries. I have read a bunch of his books now. I read an essay he wrote in a magazine about his best friend who died two years ago in a plane crash.

Harlan Coben is my age and grew up in New Jersey and his books take place there. Aside from his books being really fun, I am sure that I like them because of my being the same age, Jewish and living in New Jersey when I was little and then with you at Hackensack. I can hear the loss of his friend in his writing. That makes me like him too.

I also like mysteries by a guy named George Pelecanos. He lives in Takoma Park or Silver Spring and all of his stories take place in Washington, DC. It is fun to read in a book all of the places that you see every day. He also likes the same kind of music I do, and also I love seeing him mention in his books the music that I like. I sent him an XM radio years ago and sure enough XM popped up in his last book. That felt great.

The first Harlan Coben book I read was called Darkest Fear. I think I bought it at an airport because I was looking at a whole row of books and chose his because I thought that his name was interesting. I figured it was some strange misspelling of "Cohen."



Naturally, the book was about a kid who needed a bone marrow transplant. I remember being in an airport reading it and just being blown away when I read that this kid had Fanconi amemia. As I read I kept saying to myself, "this isn't right," and "that's not right." I knew too much. That is a mystery title, "The Man Who Knew Too Much."

So of course I tracked down Mr. Coben's email address and wrote him. I think that I said to him that I thought it was great that he wrote about FA. Before Molly, no-one had ever heard about FA - even though it was a kid who had FA who received the first cord blood transplant ever - and it is important that more people know about it so we can get more money for research and find a cure.

I do remember asking him if he could make a contribution to the Fanconi Anemia Research Fund. I thought about that a few weeks ago when I was talking to Molly's mom who said she asked the same thing of Jodi Picoult, who wrote the book "Sister's Keeper," which is a story about a little girl who needs a transplant.

Back to the book I just finished, "The Innocent." It was a good book, and there was one part that I found personally interesting.



If you click on this you can read it.


(click to read)

I think about this myself. I think that Harlan Coben is really sensitive to it because of his friend's death.

This is what he wrote about his friend's son.

On December 10, 2005, a little more than a year after the plane crash, Jesse Miller was called to the Torah for his bar-mitzvah. Looking up at him from my seat with the congregation, I saw Steve, of course. But as his beautiful son ended the service by singing Imagine by John Lennon, I realized something simple and profound.

I love Jesse.

I have everyone's pictures that they sent us during December. I have them in a pile because I have wanted to scan them in and put them on here so you can see how everyone is growing up.

We don't send one out.

I gotta work on improving the quality of the video on Henry TV. I'll crack that nut soon enough. Hey, yesterday was one of Joe's last baseball games. I took video of him getting his two hits. I cannot believe that he is older than you were in the video I put up yesterday. The drugs made you look like you were eight even though you were only four and a half. But you didn't just look older -- you acted older.

When we got home I was looking back through videos of you. I watched one from St. Michaels that showed Mom pitching to you. Watching from his stroller was none other than Future Hall of Famer Joe Goldberg. So I can only assume that he learned his great hitting form from watching you and later, Jack.

I was worried that there are very few pictures of you and Joe together, but now that I know there is video I feel much better. He'll have that to remember the two of you by. I'll try and post that video soon.

Jack is getting really good at the Internet. I wonder how long it will be before his curiosity and his surfing skills bring him here. I wonder if he finds it whether he'll tell me. This whole thing is as much for him as it is for me.

Jack uses this thing on the computer called Google Earth that lets him look at places all over the planet. You look at pictures of the earth taken by satellites up in space. It is supercool. This morning I showed Jack where I used to live in London. Then Joe asked Jack to show him the White House because Joe saw it on a field trip his class took downtown yesterday.

I told Joe how you and Jack went inside the White House and met the President. Too bad I don't have video of that.

At some point I'll probably put some kind of map or pictures on here of everywhere that was important to you... Calvert Street, St. Michaels, Minneapolis (I found the video of you with the Vikings cheerleaders!), Hackensack and Baltimore. Maybe I need to retitle this whole thing "Project Henry."

Mom and I went to Hackensack today. We got up really early and drove there for a Hope for Henry party. We then drove down to Philadelphia for a meeting to talk with some people about a party they are planning to raise money for Hope for Henry Foundation. These are really nice people who want to help us. They never met you but they know how important it is to help kids like you who spend too much time in the hospital.

It was hard for me to be at Hackensack. I don't know if I was just really tired from waking up so early, but when we got there I had that slightly tingly feeling, the feeling of "lightness" that I have when I get sad thinking of you. While we were in the playroom I saw a kid who made me think of you.

I just cried for the third time in four days today. I am glad we are going on vacation next week.

On Sunday, we went to Papa Teddy's and that was hard. Then it got even harder as we watched ESPN and they had a segment on a boy whose Make A Wish wish was to be a coach for the day with the Philadelphia Eagles. I had to walk away. I couldn't take it.

Then yesterday, Mommy and Debbie Blum and I went to Children's Hospital in Philadelphia and together with these really nice people from a place called Jacobs Music gave a totally cool piano to the clinic there.

Two of the guys from Jacobs music are brothers who are about to lose their other brother to cancer. That is part of the reason they are helping Hope for Henry Foundation. He is supposed to die any day now.







There was a boy in the music therapy room who was you. I watched him walk unsteadily into the room holding his mom's hand, and saw you walking down the hall in the clinic in Minnesota for the neurologist who wanted to check the neuropathy you had from the steroids and GVH. Or maybe it was after your brain surgery. I can't remember which.

I couldn't take my eyes off this kid. Unfortunately, he was you when you were not in a good mood. And I know that a lot of that bad mood is because of all of the steroids.

His name was Matthew. There were too many people in the room and just too much activity. He seemed okay before we all crowded in. But with all of the commotion he just kept his chin against his chest and stared downward.

It reminded me of when Superman came to visit you in your room at Hackensack. You wanted nothing to do with him. I felt bad on so many levels.





That head of hair definitely looked familiar.



Everyone was very happy about the piano, but I just wanted to take Matthew away from that room and hug him. Luckily, he got off the piano bench after a while and just buried himself against his mom and then he walked off with his dad.

Which takes me to 5 minutes ago when I watched this video about another Matthew. I know Matthew's parents and they are really, really good people. Going through this once is enough. I cannot even imagine. It is interesting to see Dr. MacMillan. I wonder if she is still running. I remember that she runs marathons.

The shot of the Mississippi is right where Jack and I went down and skipped stones. Joe and I did that on Saturday at Seneca Creek Park after we dropped Jack off at Shadowlands.





Matthew Pearl Prepares For Bone Marrow Transplant; Teammates In Eureka Show Their Support

Minneapolis, Minnesota, where the calm of the water is overshadowed by sleepless hours for a St. Louis County family.

The University Of Minnesota Hospital-Fairview is a leader in the fight against Fanconi Anemia, a rare and vicious blood disorder that has left 9 year old Matthew Pearl fighting for his life.

His mother Diane said, "The medicine is like drinking Drano. It kills all the cells, and the cells are so sensitive at your mouth and bottom areas. That's the first place you start getting sore."

To prepare for transplant, Matthew is receiving transfusions which eliminate his immune system. "What's difficult about Fanconi Anemia is they don't repair their DNA well. So if you give them chemotherapy or radiation they can get really sick," according to Dr. Margaret MacMillan of the marrow transplant program in Minnesota. "In general, you give them a fifth of what you give a normal patient."

The side effects are excruciating. The pain is so unbearable at times that not even a mother's touch can make it go away.

This is the second time the Pearl family has undergone this kind of suffering. Daughter Alex underwent a bone marrow transplant for the same disorder five years ago. Her mother said, "Unfortunately, it gets worse before it gets better."

Matthew's father, Mark, is also at his bedside. Fighting back tears, Mark said, "When he's resting comfortably we've had some tremendous father-son time.

While the Pearl family prepares for Friday's bone marrow transplant, Matthew's friends are doing their part to show how much they care about him.

At home in Eureka, Matthew's baseball team skipped practice on Wednesday. Instead, they spent the evening shaving their heads in his honor.

Matthew will likely lose his hair due to chemotherapy and radiation. His teammates figured he shouldn't be bald alone. Of course, that didn't make going under the blade any easier.

Ford Viehman says, "I've been growing it out all summer and now I've got to get rid of it." Eli Schmidt says, "I just got this mohawk about a week ago, and I really don't want to lose it."

But they're prepared to make the necessary sacrifice, in honor of their good friend. Collin Fischer says, "He's like a brother to me. A brother from another mother."

The kids' coach couldn't be more proud. In fact, he thought it was such a good idea, he got his head shaved, too. He says, " We didn't push the kids and say this would be a neat thing to do. The kids said hey we want to do this for Matt."

The haircuts and the hysterics were all caught on tape. The team will mail it overnight to Matthew. They can't wait to hear his reaction. Collin Fischer says, "He's probably not going to say anything. He's just gonig to laugh his head off."

But more than anything, his newly bald teammates want to make sure Matthew gets their message. Fischer says, "That we're all with him and good luck."

His friends know Matthew has a difficult road ahead. They hope their support and their gesture will make him smile in the coming months.

Kind of a wacky article, but your name is in it.


Fewer red blood cells
By Jen Waters

August 16, 2005

Laurie Strongin is holding out hope for many critically ill children.

In honor of her son, Henry, who died in 2002 at age 7 of Fanconi anemia, she started the Hope for Henry Foundation, a nonprofit organization that brings laughter and smiles into the lives of children with life-threatening illnesses.

With the release of "Harry Potter and the Half-Blood Prince," Ms. Strongin, who lives in Northwest, hosted Harry Potter book parties at Georgetown University Hospital in Northwest and Hackensack University Medical Center in New Jersey.

"Henry's disease was different than some of the other anemias because it was absolutely life-threatening," Ms. Strongin says. "It was as serious as cancer."

Although the average person usually associates anemia with low iron levels, there are close to 100 different types of anemia with many causes, including serious disease, blood loss, genetic predisposition, side-effects of medication or vitamin deficiencies. Depending on the form of the disease, it can range from mild to severe.

Although there are differences in the severity of the anemias, they all lead to the same endpoint -- the number of red blood cells in the body decreases, says Dr. Sophie Lanzkron, director of the Sickle Cell Center for Adults at Johns Hopkins Hospital in Baltimore.

"If you're anemic, you shouldn't just let it go," Dr. Lanzkron says. "You can't just say, 'I've been anemic all my life.' "

Generally, anemia is caused by inadequate production or increased destruction of red blood cells, says Dr. Lawrence Lessin, medical director of the Washington Cancer Institute at Washington Hospital Center in Northwest.

In patients with deficient amounts of iron, vitamin B12 or folic acid, red blood cell formation usually is impaired, he says.

Red blood cell forma tion also can be sup pressed by cancers, in fection, inflammatory diseases, chemical radia tion, medication, and viruses, such as HIV, hepatitis and cytomegalovirus.

Fanconi anemia, an inherited anemia, involves the failure of bone marrow to produce all types of blood cells. Many children with the disease have bone marrow transplants.

Increased red blood cell destruction, which generally is not improved by additional iron supplementation and can possibly make it worse, can be seen in association with sickle cell disease, Cooley's anemia, spherocytosis, hypersplenism and parasites, such as malaria.

"It's an extremely complicated issue, but a very common problem," Dr. Lessin says. "Each time you find a case it leads you to look further to the true root cause."

By American standards, more than half the people in the world are anemic, Dr. Lessin says. People in Third World countries especially suffer from iron loss or uncompensated blood loss, for reasons such as giving birth or parasites.

However, in the United States, at least 25 percent of people entering the hospital are anemic, and physicians must treat the underlying disease to relieve the anemia, Dr. Lessin says. Diagnosis is made through a simple blood test.

Sickle cell disease is a severe form of anemia that is commonly inherited by people of African descent, says William P. Winter, deputy director of the Howard University Center for Sickle Cell Disease in Northwest. He holds a doctorate in biochemical genetics.

Since the sickle cell gene originated in Africa, it is believed that the condition is the body's way of adapting in order to survive malaria, he says.

A person who has one normal gene and one sickle cell gene has the sickle trait. If the person's spouse also carried the trait, the couple's children could inherit the disease.

The disease involves an abnormal structure of the hemoglobin, which is the oxygen-carrying protein that makes blood red, Mr. Winter says. In the process of delivering oxygen to the tissues, the red blood cells change shape, becoming long and thin, he says. Since they are abnormal, they are destroyed in the liver, causing anemia.

"If a cell is old and feeble and not doing its job, it gets destroyed," Mr. Winter says. "That's normal life. In sickle cell, they are being broken down much faster than the body can replace them."

Most anemias cause people to be tired and unable to perform physical tasks, which affects the person's quality of life, he says.

Curing sickle cell disease is like trying to "cure" someone of their eye color, Mr. Winter says. With a genetic disease, most doctors focus on sustaining the patient's life.

Blood transfusions often help, as long as the patient doesn't become allergic to the transfused blood, Mr. Winter says. In cases of stroke, damaged liver or acute chest syndrome, blood transfusions are particularly important. Also, the drug Hydroxyurea can help prevent episodes of pain associated with sickle cell disease.

In some cases of sickle cell disease, a bone marrow transplant can be extremely effective when it's accepted by the body, he says. A bone marrow transplant allows the body to make a new set of red blood cells.

"The body could reject the bone marrow," Mr. Winter says. "It all has to do with having a perfect donor."

Blood transfusions are almost always necessary when treating Cooley's anemia, also known as thalassemia major, says Dr. Vasili Berdoukas, honorary pediatrician at the Sydney Children's Hospital in Australia. He is a leading authority in clinical care and research in thalassemia. He currently lives in Northwest.

The inherited condition usually affects people of Mediterranean, Northern African, Middle Eastern and Asian heritage. Similar to sickle cell disease, the adaptation of the cells in the carrier state, known as thalassemia minor, is thought to protect a child against dying from malaria.

Through the blood transfusions, people with Cooley's anemia acquire more iron than they need, he says. Therefore, patients also need treatment to remove iron. Otherwise, it could cause organ damage, especially to the heart.

"Because iron is scarce, bodies are made to conserve iron," Dr. Berdoukas says. "We keep it and have no mechanism for getting rid of it."

In order to remove iron, Pranav Saha, 25, of Odenton, Md., sleeps with a needle in his stomach that is attached to a pump delivering the medication Desferal. Patients are waiting for a drug that can be taken by mouth to remove the iron.

"A lot of times, thalassemia can be mistaken for regular iron deficiency," Mr. Saha says. "Giving iron is exactly the opposite of what you should be doing. You can't assume that someone has an iron deficiency."

Copyright © 2005 News World Communications, Inc. All rights reserved.

Hey, look, it's your brother, Joey Potter. Joe got into the spirit of things this weekend.



On Friday night at midnight we went to Politics & Prose to wrap a whole bunch of Harry Potter books to take to Georgetown the next morning. Mom, Jack and I had an assembly line going -- with Mom doing most of the work, of course. I am a lousy wrapper. I did most of the carrying though. I am good at that.

On Saturday morning we went to the clinic at Georgetown for a party. All of the kids were really excited. Uncle Stinky read some trivia questions, and one of the patients read the first chapter. It was fun.





On Saturday night, the Hope for Henry Foundation delivered books to the kids on the transplant floor at Fairview. The cool thing is that Jason put the books on everyone's dinner trays. I was worried that there would be kids like you who wouldn't eat dinner, but then I remembered that there would be daddies like me who would eat their kids' meals.

From all reports the kids in Minnesota were also psyched to get their books.



Here is a picture of one of the kids wearing his Hope for Henry Foundation gift, his iPod, while he is reading the new Harry Potter book. How cool is that.



It was a crazy weekend because we also drove out to the Eastern Shore, right near Nana and Papa Sy's house, to see our friends the Knapps. Their house and their farm were beautiful. We went fishing and kayaking, so I guess that is what everyone does on the Eastern Shore.





This was my favorite part. There was a basketball net in the barn. I think they should put lights in there so you can play all night. This is heaven.



Jack and Joe's favorite part had to be the Emu farm that was next door. They look like ostriches. Of course Jack knew all about them.





They also have two of these motorized thingies. Remember the one we had in Minnesota. I never told you and Jack that I donated it to the hospital because I couldn't fit it on top of the car for the ride back to DC. Sorry.



On Monday we headed up to New York and New Jersey for more Hope for Henry stuff. Jack went with, while Joe stayed home and went to camp at the Gan. We made a stop in New York City and went on TV to talk about what we were doing.

After the TV show we headed over to the Pokemon store. Guess what. It isn't the Pokemon store anymore. It is the Nintendo store.

We then drove to Hackensack for a Harry Potter book party at the Tomorrow Children's Institute clinic. Everyone was there, Dr. Gillio and Dr. Brochstein.

I hadn't been back to Hackensack since you were alive. I lived for every foot of the hospital, the clinic, the hallways, the elevators, rooms and everywhere you used to be. We visited a kid in your room at the end of the hall. It looked just the same.

I went and looked at the showers where I would sneak off to so I could get clean before you got up. I was always worried you'd wake up alone before I got back. They had good water pressure. I checked out the lounge where I spent my birthday one year. I looked in on the room where Papa Teddy and I would watch football games. I miss those rooms and those times.





When we were through at the hospital, we made one last stop before driving home. We bought a Hero Bear for Joe and I think Jack got a comic book.



I am looking at a picture of you and crying. It is all so hard but hard is good.

I miss you.

I woke up at 6:05 this morning. I was having a nightmare.

I was on an elevator at Johns Hopkins (speaking of, remember how the parking lot elevator was always broken) and it stopped at a few floors. All of the kids on the floors looked like you when you were really sick. I got off on one floor and Grandma was there. She was alive and looked very pretty.

I saw that she was standing with Jack at a bedside. The kid in the bed had died. Jack said that it was his brother. I thought it was you but for some reason I asked if it was you Jack said "no." It was when I realized that it was Joe who died that I started gasping for air and woke up. I was pretty loud I guess because I woke Mom and she asked if I was okay.

You know Mom had a dream that Joe drowned or something a few weeks ago. I guess we are scared of losing him too. The good thing is that Jack is safe in my dreams.

We went to the circus today. Remember the clowns at Hackensack. I know that both Jack and Joe are a little freaked out by clowns so I worried a little bit about that.

The circus was at the Armory which is next to RFK stadium where I grew up going to Washington Senators baseball games and then Redskins football games. I have had some of the best times of my life there including watching the Redskins play (with Uncle Bill) and going to rock concerts with friends.

As we were driving there Joe started asking questions about you and you dying. He wants to know if everyone dies. He wants to know where you are. He wants to know who your parents are. Mom told me that Joe asks her about you every night when they are getting ready for bed. I think she said that Joe thinks you are outside. Mom explains that you are in our hearts. Joe says that he doesn't want to be in our hearts. He is a scared. We have told him that you were very, very sick beyond anything he'll ever experience. Born with sick blood sick; hospital sick; not going to the doctor sick. I think it is interesting that he is afraid of dying and in our nightmares we're afraid of him dying.

We got to the Armory a little early so we went to the store at the stadium where they sell Washington Nationals hats and t-shirts. Jack and Joe got stuff. When Jack put on the Nationals hat I felt a bunch of things going on inside me.



I think it was because that is the hat that the Senators wore when I was growing up. They left town when I was about Jack's age and then I never had a team to root for the rest of my life. The Orioles were just not our team. That isn't fair to do to a kid. I got excited for Jack and for Joe.

Joe and Jack really enjoyed the circus. You know how Joe love animals. The circus has a lot of elephants and lions, his favorites. I know that Jack was psyched when the motorcycles rode around in a steel cage ball. Mom thinks that she and I went to the circus once on a date, but I don't remember. I thought this was my first time going to the circus.

When we got home we walked over to Stoddert and guess who was there playing baseball. Ari, and Jack's buddies Benji and Maxwell, and David Lane all play on a team called the Orioles.



Watching Ari helps me figure out what you'd be like had you lived. You would have been smaller but I don't think about that. I am more interested in how grown up he is. What it is like talking to him. What he knows, what he likes. He is very handsome.



Jack was really wanting to be on that team. We hung out for the entire game. I emailed the Commissioner to see if Jack could be on the Orioles but it doesn't look good. We'll have to work on this.