Monday, December 24, 2007
We are back in Captiva with the whole family, Nana, Papa, Andrew Tracey, Sam and Emma, for Christmas vacation. Last night we all stayed up to watch the Redskins game. The Redskins won! Woohoo!
Jack fell asleep on the couch and Joe fell asleep in bed with me and Mom. In the middle of the night, Joe -- out of nowhere -- yells,
and then he mumbles a few other things. Mom says, "Shhh, go back to sleep," and he does.
How funny is that.
Of course, later in the night I move out to the other couch because Joe has t-boned me right off the bed. Mom asked me why I didn't just "relocate" Joe, and I told her I was just too tired.
Where did that come from. He is a funny one, your brother.
Tuesday, December 18, 2007
The Greatest Gift
20/20 Brings You Heartwarming Stories of Hope This Holiday Season
Dec. 17, 2007 —
Within hours of Katie Trebing's birth Dec. 12, 2002, she needed a blood transfusion to save her life -- the first of many to come.
Steve and Stacy Trebing's daughter was born with Diamond Blackfan Anemia, a rare bone marrow disease that affects just 30 out of 4 million births each year in North America. Stacy will never forget the day her pediatrician broke the news.
"I remember vividly being in his office, holding Katie, and him saying, 'OK, you're gonna be tied to hospitals for the rest of your life.'"
Katie's body wasn't making any red blood cells to carry oxygen to her organs, and never would. She needed transfusions every three to four weeks or she would die. But that treatment came with devastating side effects, drastically shortening Katie's life span. More than 40 percent of transfusion therapy patients die before they turn 40.
There was just one way to cure Katie -- a bone marrow transplant from a perfectly matched sibling. Her older brother, Calvin, was not a match and the Trebings learned about a process of testing embryos called pre-implantation genetic diagnosis. The outcome would ensure their next child and Katie shared the same bone marrow DNA.
Some critics say PGD creates children for "spare parts." For Steve and Stacy, the technology meant a healthy sibling added to their family and the chance for Katie to have a normal life, but there was a dark side. A bone marrow transplant was a perilous operation: It would either cure their daughter or kill her.
Friday on "20/20" you'll see how far this family was willing to go to keep their daughter from a lifetime of suffering, and the events that swayed their decision on whether to create the perfect sibling.
And, find out how you can give the greatest gift to a child this holiday season.
Teachers spend more than $1 billion a year on supplies for their classrooms. That is an astonishing number for these underpaid public servants, and yet they still don't have everything their classrooms need.
A Web site called DonorsChoose.org is bringing help to classrooms around the country that require anything from the most basic supplies to the most innovative teaching tools. From pencils to computers to field trips, teachers post their unique requests on the site and donors can select which proposal they want to fulfill.
It sounds simple, and it is, but since founder Charles Best started the nonprofit seven years ago, more than $15 million has been funded. Not only are teachers getting the essentials that they need, but donors are fulfilled as well.
"When they're happy, they start bouncing around like a little rabbit and you just laugh because of their joy," said a fifth-grade student whose school participated in a fundraiser in the spring that earned $5,000 for DonorsChoose.
Watch these inspiring stories of "The Greatest Gift" Friday on "20/20" at 10 p.m. ET.
Copyright © 2007 ABC News Internet Ventures
You would have been part of this study at Hopkins. Your gut GVHD had all of the doctors vexed. Timing.
Study Assays Marrow Transplant Troubles
HEALTHBEAT: Study Examines the Potentially Deadly Side Effects of Bone Marrow Transplants
By LAURAN NEERGAARD
The Associated Press
Bone marrow transplants are one of cancer care's striking successes, but they have a dark side: The transplanted cells can turn on patients, attacking their skin and organs.
The potentially deadly side effect with the unwieldy name of graft-versus-host disease, or GVHD, strikes several thousand each year. The last decade has brought little progress in battling it.
Last month brought another blow, as the Food and Drug Administration rejected the new drug closest to market.
But that drug, called orBec, isn't dead; its manufacturer is pledging additional research to satisfy FDA's concerns. And it joins a list of other promising experiments into ways to ease the misery from novel stem-cell infusions to drugs that block immune cells-run-amok.
The burst of research comes none too soon, as a long-lasting form of GVHD is on the rise.
"I love my doctors, but they throw up their hands. They don't know what to do," laments Stephen Dugan, 54, of Radnor, Pa., who longs for an alternative to the problematic steroid that is today's treatment mainstay.
His transplant four years ago saved Dugan from cancer. But two months later he barely survived a harsh bout of GVHD; now he battles a less severe but chronic form of the disease.
When someone receives a transplanted organ, the big fear is that their own immune system will attack the new "foreign" tissue. GVHD is the opposite problem. It occurs when patients receive donated bone marrow or the stem cells that produce it, pieces of someone else's immune system. Sometimes the donor's T cells, whose job is to hunt foreign invaders, become super-aggressive and attack the recipient's body.
It happens in at least half of the more than 6,000 Americans who receive allogeneic or donated marrow or stem-cell transplants every year. Many times, GVHD is mild or moderate, causing skin rashes or blistering, vomiting, liver or lung damage. But one of every five cases is life-threatening. A particularly dangerous form ravages the stomach and intestines, causing unremitting vomiting and diarrhea.
The only treatment: Super-high doses of the steroid prednisone for weeks, to suppress out-of-control immune cells and the inflammation they cause. But the treatment's side effects are severe, even deadly: Patients fall prey to infections; it debilitates bone and muscle until some become bedridden; and it can cause violent mood swings. Plus, about half of seriously ill patients fail to improve, prompting doctors to frantically add other steroids.
"They're our best friends but our greatest enemies," is how Dr. Steven Pavletic of the National Institutes of Health describes prednisone and its cousins.
Now in advanced testing are treatments that aim to calm GVHD without that body-wide steroid toxicity:
OrBec is a milder kind of steroid, a pill version of the beclomethasone that asthma patients have long inhaled. Dr. George McDonald of Seattle's Fred Hutchinson Cancer Research Center reformulated the drug to coat the gastrointestinal tract, not roam the body.
Adding orBec to standard prednisone seemed to improve survival, a year after gut GVHD first struck, by 45 percent. But because of a statistical issue with the research, the FDA told Dor BioPharma to show more evidence that orBec works. The company pledged to do so, and already has a different Phase III trial under way to see if giving orBec with the transplant can prevent gut GVHD in the first place.
The experimental drug Prochymal aims to soothe the source of GVHD's inflammation without suppressing immunity. It's made of a different kind of stem cell, mesenchymal cells. Your own mesenchymal cells are damaged during a bone marrow transplant. But when donated ones are infused into patients' bodies, they steer to wherever GVHD is attacking. There, overly aggressive T cells spur high levels of chemicals called cytokines that in turn inflame tissue.
The mesenchymal cells "change the chemical environment and basically put the brakes on" that damaging process, explains Dr. Hans Klingemann, bone marrow transplant chief at Tufts New England Medical Center. He is the independent safety monitor for Osiris Therapeutics' studies of the drug.
In a small study, adding Prochymal to steroid treatment doubled the chances of a complete recovery. Now a large Phase III trial is beginning to try to prove that effect.
Johns Hopkins University researchers are studying if two doses of an old cancer drug, cyclophosphamide, at the time of transplant could prevent GVHD anywhere in the body. It's a drug thought to block the function of only bad-acting immune cells, while allowing the rest of the immune system to build back up after the transplant. Of roughly 100 patients tested so far, 65 percent have needed no further anti-GVHD protection, says Dr. Leo Luznik of Hopkins Kimmel Cancer Center. Larger studies at other hospitals are about to begin.
EDITOR'S NOTE Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
Copyright © 2007 ABC News Internet Ventures
Monday, December 17, 2007
Last night all the power went out. There were really strong gusts of wind all night and then all of a sudden at 11:04 pm right in the middle of the Redskin's game - every house and every light on Calvert Street went dark. It was pretty cool. Very peaceful.
The only light in all of that darkness was your yarzheit candle blazing away on the kitchen counter.
We were in the store the other day and I saw a yarzheit candle that burns for 48 hours, which I have never seen before. Knowing the Jews, this is probably to ensure that you get the timing right no matter what or where you are. I bought it solely because I wanted you to shine as long as possible. According to the Hebrew calendar, the day you died started Friday night.
Mom and I used your candle to make our way upstair in the dark.
I love you. I miss you. I think about you always.
Saturday, December 15, 2007
These are pictures from our New York trip when Jack, Joe and I were sick. There is a really wonderful story and really wonderful person behind these photos.
A woman named Kellee read a post I wrote to you about pictures she took of a girl who has Fanconi anemia. Kellee got in touch with me and said that she'd like to take our picture. She lives in Ohio but was coming to New York.
We met her there two weekends ago. I suggested that we meet at the playground in Central Park with the stone slide because that was somewhere that you and Jack liked to go.
We took some pictures there and then walked over to the petting zoo. We ended up at the big Central Park Zoo.
Even though it was freezing and we were sick (Joe was getting over pneumonia, Jack has an awful cough and I had just woken up that morning with a big fever), it was terrific. Kellee, who we never met before, is just a sweet, sweet woman and we all got along great. She is, as you can see, a great photographer. Mom is so beautiful and you can see it in the pictures. What was special for me is to be able to be in some pictures with everyone. I feel like I am always taking them, so this was especially nice.
I wish that every family who has a really sick kid could have someone like Kellee take their pictures together. We have those pictures from Norman that were taken at the beach, but those were for the New York Times. I wish I would have thought to get a photographer to come take pictures of us when you were doing somewhat okay.
Part of the reason I do this is to be able to look at pictures of you all the time. Pictures. Pictures. Pictures.
I love you.
Thursday, December 13, 2007
Here is the blog of a kid named Andy Trevino who was saved by his sister Sofia. They are from Mexico. Andy had a transplant after his parents had Sofia through PGD. They had their transplant at Boston Childrens.
His dad Andres seems like a great guy. He is like Mom. He speaks to people to help them understand why PGD is important.
Wednesday, December 12, 2007
I told you that Joe loves to draw. He draws all the time. It used to be just rainbows but now he does a lot of different things, like boats, whales, trees and flowers.
I was helping him get his art supplies together the other day. I said, "Where are your magic markers?"
He said, "Dad, I've got markers somewhere, but not magic ones."
Yesterday was your 5th Deathday. We all went to the cemetery, then to Cactus Cantina and then we wrapped up the day by lighting the Hanukkah candles - it was the last night - and a yarzheit candle for you.
I grabbed two photo albums on the way out the door which was a good thing. We all looked at pictures of you and everyone else while we were at the cemetery and at Cactus. It was a good way to get everyone to really focus on you.
I took a video of a lot of what we did all day but am having some trouble transferring it to the computer. Look for that soon.
I was thinking that we need to have an abbreviation for Hanukkah the way there is Xmas for Christmas. There are so many ways to spell Hanukkah it might be cool to be able to just write "H-kah" or something like that. We'll see if that takes off.
It came a few days early but I did start weeping uncontrollably the other day. Here is the "progression." I had a hard day and I was home alone doing some dishes waiting for Mom and your brothers. On XM's Radio Hanukkah, Rick Recht was playing. I guess my mind went to Minnesota when we used to listen to him and then all of a sudden, standing over the sink, I started to weep with my entire body. It didn't last all that long.
Here is a cool slideshow Mom made for the day. I had wanted to do this, but Mom beat me to it and did a great job.
I get bummed out at these commercials that are playing on TV for a hospital called St. Judes. They raise money for the hospital (a really good thing) by showing celebrities with kids with cancer. They only use kids with no hair. That's what sells, but it bums me out. It is just me.
Hey, I keep wanting to tell you that Mom is on a radio show every week. Here is the link to the shows.
Your mom is destined to be a big star.
Tuesday, December 11, 2007
I started this two weeks ago…
I am on the train up to New York. Mom and Joe are across the aisle and I am sitting next to Jack. I am looking at Mom, who is trying to sleep, and Joe is watching SpongeBob (Season 3) on Mom’s iPod. Joe is not letting Mom sleep. He keeps touching her and patting her. I feel bad for Mom, but Joe can’t help himself.
Two days ago Mom said, “Joe has been sick for 16 days.” She was definitely counting and definitely worried. He had a fever that just wouldn’t go away. I am of the “lightning can’t strike twice in the same place” school so I wasn’t as worried as Mom. I knew or was just wishing it was something that was taking a long time to go away – especially since Joe isn’t the type to necessarily lie around and let himself get better. He was pretty peppy even with 103 temperature.
He seems to be getting back to normal now. Jack caught a bit of what Joe had and I am trying my darndest not to get sick myself. Remember the time we all went up to New York and Mom was sick and you and Jack were sick and we were staying in the residence at Cornell Hospital. That was pretty miserable. Even though we are the cough-a-lot family freaking out everyone sitting near us, hopefully everyone will all be feeling better for this visit.
Mom’s up now. She only needs to nap for 15 minutes to feel good. I need at least a 3-hour nap or else I feel groggy.
Your bothers are “inconsistent communicators.” Most of the time they won’t engage in much of a conversation with me. And sometimes, infrequently, they just burst open and can’t stop talking. I never know which it is going to be. Ceaseless yapping or silence.
Nicely, and from out of nowhere, the other night Joe and I actually had a nice chat.
I don’t know how I got into it, but I told Joe all of my grandparent’s – your, Joe and Jack’s great-grandparents’ -- names. There was Grandma Bertie, or Bertha Goldberg; Grandpa Hymie, or Hyman Goldberg; Grandma Gus, or Augusta Baum – kinda like Augustus Gloop; and Grandpa Nat or Nathan Baum. I told Joe that I wanted to name each one of you Nat at some point or another. It started with you, but Mom said “no way.” I remember exactly where we were, driving down Old Georgetown Road past my nursery school (a church), when I brought it up. That name option lasted for maybe, I don’t know, less than a minute.
It was less to honor my grandfather, who I don’t remember all that well other than driving a Red Cross ambulance, and more because I like the name. Joe was definitely interested in the name because it is the nickname of the Washington National’s baseball team. He then said something that intrigued me. He said that we should have named him, “Senator.” He was talking about the old baseball team here – also nicknamed the Nats – but I was thinking how cool it would be to walk around and say, “Hi, I am Senator Goldberg,” like you were a United States Senator, one of those people who gets elected.
Joe thought a little more about it and argued that instead of “Joe,” we should have named him Ryan Zimmerman Goldberg or Alfonso Soriano Goldberg. I apologized to him for not having thought of that when he was born.
I told Joe about your great-grandparents and that I didn’t really know any of them. Gus and Nat were were Grandma Phyllis’ parents. Bertha and Hyman were Papa Teddy’s parents. I then thought it would have been funny if I called Grandpa Hymie, Papa Hyman – but that is funny just to me and high school boys.
Grandma Gus died when I was one – just like you dying when Joe was that age. I don’t remember ever knowing Grandpa Hymie. Grandpa Nat and Grandma Bertie were the ones who I remember seeing more than once. They all lived in a place in New York called Brooklyn. That is where I was born.
I have a picture of you, me and Grandma Bertie. I'll find it and put it here. Mom and we visited her once a long time ago. I may have told you how she gave me a can of soy beans when I was growing up. It was the only present I remember getting from her. She wasn’t what you would call a “warm” woman or grandmother. But she lived a long time. She was 99 when she died.
Over Thanksgiving in St. Michaels everyone (but me) talked about what we were thankful for. Here is a page that Joe did at school. He is learning to read and write. He is doing really great. I hope he is as smart as you and Jack.
At Thanksgiving dinner, Joe said he was thankful for being born, and Jack said he was too. Of course, that is that he was thankful for himself, Jack, being born, not for Joe being born. That would be too much to ask for from Jack, who still gets pretty annoyed at his annoying younger brother.
Jack then said something very quickly about how Mom and I were bummed out that when he was born he wasn’t a match for you. Mom and I looked at each other and a silent, “Where’d he get that from” look passed between us because we couldn’t figure out “Where he got that from,” and more importantly because it was totally untrue.
Mom took Jack aside at some point over the weekend to talk to him about this.
It is Saturday morning a week after I started writing to you. Now I am sitting watching Joe at a University of Maryland winter baseball camp. Mom and Jack brought Joe last night and I am with him today. We are in a big indoor practice bubble across the street from where I lived when I went to school here. My dorm was called Denton. I am remembering when you and I came here late one night after your doctor appointment in Baltimore. We went to the Student Union to get a basketball jersey but they were closed. You were a big Juan Dixon fan. We were so bummed.
Joe and I sat on a bench next to this kid named Dylan and his mom while we were waiting for the camp to start. It is pretty cold even though we are indoors, so I suggested to Joe that he and Dylan run all the way to the end of the field and back to warm up. Dylan said he didn’t want to. Joe then looked at me and said with a half-smile, “Dylan came in last yesterday.” And then he repeated it and smiled at me again.
I don’t know why he does stuff like that. He is basically a good kid and a good hearted kid but this is something that he needs to work on. He is 6 and talks “smack!”
I think talking smack and talking trash are different things. I need to look that up.
You know that it is okay to be competitive, but Joe feels like he needs to remind others that they aren’t as good as he is, whether it is the kids in his class, this guy Dylan or even Jack. Mom and I have talked to him about this a lot but he keeps doing it. Joe’s coaches repeat the same thing over and over about the proper stance for hitting or for being ready in the field. I guess we need to just keep saying the same thing about being nice to others and “worrying about him” over and over again. Repetition teaches the fundamentals.
I took Joe aside and said that while that Dylan may have “come in last,” it wasn’t a nice thing for Joe to say or bring up. I want Joe to be the kind of kid who helps other kids, not makes them feel bad.
A lot of it – at least today -- is my fault. I lied when I signed up Joe for camp. I said he was a year older than he is because you need to be 7-years old to go to the camp. Aside from doing what he loves, my thinking was that being with kids who are older, bigger and better; Joe may learn a little humility. He may have a 7-year old’s skills but he may not be “mature” enough otherwise. He has problems sitting still like the others listening to the coaches. Next year will be better.
I also know that a big part of what bugs me is that growing up I was Dylan. I was the kid coming in last.
When we’re done here I will say that to Joe and see if that helps. I'll tell you one thing -- if that is our biggest problem, we are doing okay.
We finally did find out what was wrong with Joe last month. He had pneumonia. Although he may have gotten better quicker if we knew earlier what was wrong with him, I know that in a way it was a good thing that we learned after he was getting better that it was pneumonia. Pneumonia, which I think is simply an infection that is in your lungs, is ultimately what killed you. Joe’s infection was mycoplasma, yours aspergillus.
Here are pictures of you and Jack the morning of the day you were admitted to the hospital for the first time with pneumonia.
I was here alone with you and Jack, while Mom was in New York doing IVF. You were complaining that your shoulder was hurting you (and it was your shoulder that what was bothering you again in Minnesota at the end when you had pneumonia but no-one could figure out what was wrong), and I finally took you down to Georgetown in the evening. I wonder who came over to watch Jack.
For a while it looked pretty bad for you. Mom had to choose between coming back here and seeing you before you died or staying in New York to keep trying to have a baby who would save your life. Although Mom is incredibly strong, no-one should ever have to deal with those kinds of decisions. Fortunately, you got better and Mom was able to stay in New York. Our life was pretty dramatic at times.
Here is a woman who is doing something like Hope for Henry for a little girl, Nina, who died of FA. It is called Books of Love.
Here is how she describes it.
To give a child the enjoyment of a book is priceless! In 2006, our friend Nina, who was only 3 1/2 years old, died from Fanconi Anemia (FA). The passion and joy that she brought out of each person that she touched was overwhelming. During her short life, she spent many days at Doernbecher Children’s Hospital. The books in the waiting room and recovery rooms helped her escape the stress of being in the hospital. We want to continue to celebrate that passion for books.
They are trying to collect 500 books. I will definitely send one. Maybe "Pierre."
I helped Mom set up a blog for the Foundation. Here is a video that I posted of an event that Cousin Michael put together at Georgetown. I was really proud of him.
He totally honored your memory while making a lot of kids happy.
Here is Joe whistling on an acorn in Central Park.
We saw Susie and Ken and their kids. They came in from Connecticut and we went to a candy store on the Lower East Side and Katz's deli. I think we did pretty well for being different stages of sick.
Tuesday, December 04, 2007
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
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."
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
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."
Monday, November 26, 2007
A 10-year-old boy's Christmas wish: 'I just want to live'
Sunday, November 25, 2007
BY CATHARINE SCHAIDLE
OF THE JOURNAL STAR
PEORIA - At this time of year, when children are preparing their list of Christmas wishes for toys and games, Ismael Mendez has only one plea: "I just want to live."
The 10-year-old is looking for a miracle or, better yet, a hero who is willing to step forward and give him a bone marrow donation.
About a month ago, Ismael, a fifth-grader at St. Mark School, was diagnosed with Fanconi anemia, a congenital blood disease. The disease causes bone marrow failure, which means the body does not produce enough blood cells and often leads to cancer. The young boy's best chance of survival is a bone marrow transplant.
His best chance of having a perfectly matched donor was his 6-year-old sister, Leslie. However, when her blood was checked to see if it matched her brother's, she, too, was found to have Fanconi anemia.
"She is OK now, but not very long," the children's father, Ismael Mendez Sr., said in halting English. While both children speak English well, an adult cousin, Maria Flores, acted as the family's spokeswoman.
Children with Fanconi anemia typically start showing symptoms between ages 7 and 9, said Pam Eigsti, who is with the National Marrow Donor Program Heart of America Donor Center based in Morton.
Both Ismael's parents, Maricruz and Ismael Mendez Sr., are carriers of the disease but do not have the disease. The Mendez family, originally from Mexico, has been living in the United States for 18 years, moving to Peoria two years ago for the lower cost of living.
A year ago, young Ismael began having health problems. He would tire quickly and bruise easily. His parents took him to a doctor, who discovered that the boy's blood platelet count was extremely low and tested him for Fanconi anemia. He began receiving blood transfusions every three months.
"His blood count is falling rapidly, and soon blood transfusions are not going to be enough," Flores said. "So we're trying to find a bone marrow match quickly."
Because the body is not producing enough blood cells, patients cannot fight infection and often develop cancer, especially acute myelogenous leukemia - typically an adult form of leukemia - at a very early age.
The best treatment for the disease is a bone marrow transplant.
Last week, a bone marrow registration drive took place at Friendship House on Madison Street. While anyone can join the National Bone Marrow Registry Donor Program, in this instance the chances of a match for Ismael are much higher among the Hispanic population. Another drive is scheduled for Monday at the UAW Hall in East Peoria.
At Friendship House, about 100 people came forward to sign up for the drive, Eigsti said. A prior drive was held in Chicago a few weeks ago, organized by Flores.
"We had a pretty good turnout," Eigsti said. "And in Chicago we registered about 300 people."
While the immediate need is for Ismael, five other children in Illinois have been identified with Fanconi anemia and could be helped by the drive, she said.
"I'm told that Leslie has it, too, and she is going to need it (the transplant) pretty soon," Eigsti said.
Meanwhile, Ismael waits.
Like any child his age, he likes basketball and playing with friends. His St. Mark teacher Julie Craghead says he has a good-natured disposition: "He is the sweetest kid, just always smiling."
Although he and his sister have their differences sometimes, Ismael says, "Leslie is a good sister."
Ismael also serves as an altar boy at St. Mary's Cathedral, where his family attends church.
"It's for God, I like doing it," he said.
Catharine Schaidle can be reached at 686-3290 or email@example.com.
Rare disease has their 'world spinning'
Saturday, November 24, 2007
By STEVE DOYLE
Times Staff Writer firstname.lastname@example.org
Friends raising funds for family's 2 sick children
People here are rallying around a family gripped by a rare and often deadly blood disease.
Scott and Nancy Finnegan recently learned that both their 16-year-old son, Blaise, and 12-year-old daughter, Madeline, have Fanconi anemia. They will eventually need bone marrow transplants to survive.
"My world is spinning," said Nancy Finnegan, a makeup artist at Belk in Parkway Place. "I'm still very optimistic, but once you start the procedures, that's when it gets scary."
Madeline also has aplastic anemia, meaning she has lost some bone marrow, and is being treated by a Minneapolis doctor who specializes in Fanconi anemia. Blaise had a bone marrow biopsy test Wednesday at St. Jude Children's Research Hospital in Memphis to find out if his marrow is also failing.
While the Finnegans wait on those results, friends are scrambling to raise money for their future medical expenses. Neighbors Matt and Tracey Gibson have organized a Dec. 10 benefit golf tournament and silent auction at Hampton Cove's River Course.
"They need to focus on getting better and not have to worry about money to the extent that we can help them," Matt Gibson said. "I would like to raise a minimum of $30,000, but that's just the start of what this family is going to need to help sustain them over the coming months and years."
Prayer groups at Cove United Methodist Church are also raising money for the Finnegans, who belong to Holy Spirit Catholic Church on Airport Road. The Finnegans moved here from Merritt Island, Fla., three years ago.
There is also talk of a bone marrow testing drive to try to find a donor for Blaise and Madeline, Gibson said. Siblings are usually the best bone marrow donors, but the Finnegans' youngest child, 7-year-old Trinity, is not a match.
The ordeal began in March, when Madeline, now a seventh-grader at Hampton Cove Middle School, went to the doctor because of stomach pain and vomiting. Her pediatrician suspected appendicitis, but tests showed problems with her red blood cells, white blood cells and platelets, Nancy Finnegan said.
Last month, Madeline developed sores in her mouth and throat and was sent to St. Jude for a bone marrow biopsy; she was diagnosed with Fanconi anemia a few days later.
Fanconi anemia is a genetic blood disorder that causes bone marrow failure and often leads to acute myelogenous leukemia. Even after bone marrow transplants, Fanconi patients have an increased risk of developing cancer and other serious health problems.
Blaise, a Huntsville High junior who referees youth soccer and belongs to the Air Force Jr. ROTC, was diagnosed about 10 days ago, after tests to see if he was a bone marrow match for his sister. Neither child appears sick, their mother said, but they will have to avoid contact sports from now on.
Nancy Finnegan said she and her husband, an engineer at the Marshall Space Flight Center, may try to conceive another child through in vitro fertilization who could be a bone marrow match for Blaise or Madeline. Money from the golf tournament would help pay for fertility doctors and related costs not covered by their health insurance.
"The community has been very supportive; it's felt like a family," she said. "It's a blessing to have them in our lives right now."
© 2007 The Huntsville Times
Thanksgiving was great. It was us and Nana and Papa. Just like when you were just born.
We were all out at St. Michaels. Uncle Andrew, Aunt Tracy, Sam and Emma came out as did all of the Mintz's. We had a nice football game and all of the kids ran around and had a blast. Here are some pictures.
As you can see from the deer on the bumper, some on the Eastern Shore didn't have such a great Thanksgiving weekend.
Thursday, November 22, 2007
Parents hope registry leads to match
Marrow needed to fight rare anemia
By Jean Laquidara Hill
RUTLAND— James and Leone E. Morgan did not take the birth of their daughter for granted on Feb. 23 nearly nine years ago.
Two years earlier the Morgans had buried their prematurely born son.
Alecia grew into a loving and shy child and a passionate fan of the Patriots, especially Tom Brady. “She was fine, you know, a typical kid, the ear infections, a couple of colds,” Mrs. Morgan said recently.
“She’s a beautiful 8-year-old girl whom we thought was very healthy until right around her 8th birthday,” she said.
But last February, as her parents were planning her birthday party, Alecia got a bad cold. She was diagnosed with a sinus infection, and antibiotics were prescribed.
But when the antibiotics failed to work, Mrs. Morgan took her daughter back to the doctor, who sent her to UMass Memorial Medical Center — University Campus in Worcester.
“We were waiting in a little cubicle and three doctors walked in, and I thought, ‘This is bad,’ ” Mrs. Morgan said.Alecia was admitted to the hospital for tests. She seemed to improve and the Morgans brought her daughter home.
On March 17 at 1:45 p.m. when the telephone rang with test results, Alecia seemed so much like her old self that Mrs. Morgan told the doctor: “Alecia is fine.”
“No she’s not,” Mrs. Morgan recalls the doctor telling her. She felt like she had been kicked in the stomach.
“Kids aren’t supposed to be so sick,” she said.
The doctor told Mrs. Morgan that Alecia had Fanconi anemia. Meetings were set up to explain the condition further and arrange treatments.
Meanwhile, Mrs. Morgan read about her daughter’s illness on the Internet. As she read, a weight pressed down on her chest.
As Alecia’s pediatric hematologist, Dr. Christopher P. Keuker of UMass Memorial Medical Center explained in a recent interview that Fanconi anemia is an extremely rare, life-threatening disorder that disables the body’s ability to produce blood.
“It is the first and only case I’ve treated in my career and it’s over 10 years,” Dr. Keuker said about Alecia’s diagnosis. His colleague, who has been practicing for 20 years, has only treated one case of Fanconi anemia.
The disorder is inherited from two recessive genes, one from each parent. In addition to its other cruelties, Fanconi anemia increases the likelihood of blood cancers.
“Most blood and cancer disorders in kids are rare, and this is the rarest of rare,” Dr. Keuker said.
Put simply, said Dr. Keuker, Fanconi anemia causes bone marrow to fail so it cannot produce blood. Alecia gets blood transfusions every six weeks to stay alive. After the transfusion, said Mrs. Morgan, Alecia’s lips and cheeks are rosy and she has energy. But as the weeks pass, her color fades to pale. Her red and white blood cell counts drop, as does her blood’s ability to carry oxygen to her organs. Alecia gets lethargic, weak and susceptible to illnesses.
The possible solution, said Dr. Keuker, is a risky bone marrow transplant that is performed in only three hospitals in the country, including Memorial Sloan-Kettering Cancer Center in New York City, where Alecia goes for treatment in addition to treatment from Dr. Keuker. He said Memorial Sloan-Kettering has agreed to consider Alecia for a transplant, if a donor can be found.
The Caitlin Raymond Bone Marrow Registry will register donors from 10 a.m. to 5 p.m. Nov. 24 at Bushnell Farms Store, 26 Pomogussett Road (Route 56).
Five-year-old Could Face Marrow Transplant
BY BECCY TANNER
Michelle Colgan counted her new granddaughter's fingers in the birthing room.
One, two, three, four.
She counted again.
Then a nurse blurted out: "Oh, look, she doesn't have any thumbs and she's missing an ear."
Alicia Reed had been born with Fanconi anemia, a rare, terminal disease. Many patients eventually develop acute myelogenous leukemia.
Five years later, Colgan is raising her granddaughter in Wichita and traveling occasionally to Cincinnati for treatment of Alicia's leukemia, which showed up in a biopsy late last year.
Medical bills have mounted. Rent, utility and travel costs have been hard to pay.
Colgan is seeking help from Share the Season, which offers one-time aid to people affected by unforeseen hardships.
"I am forced to spend every cent I have saved for Christmas to get her to the hospital," Colgan wrote on her application. "Every moment the Lord gives her with us is the best gift ever."
Colgan says she and Alicia have been inseparable.
She has legal custody of Alicia and considers the 5-year-old her best friend.
The little girl jokes and "high fours" strangers. She smiles and takes the doctors' poking, prickings and proddings good-naturedly, her grandmother said.
She's had her blood tested and had four bone marrow biopsies in the past year.
She has survived two surgeries, one where her index fingers were moved to the thumb positions; another to cut muscles to uncross her eyes.
Now, she may be facing a bone marrow transplant within six months.
"Alicia is giving this fight her all, and she deserves all the help we can give her," Colgan said.
Fanconi anemia is a rare, recessive disorder: If both parents carry a defect in the same gene, their child has a chance of inheriting the defective gene.
There is no cure. Few children who have it live to be adults. But Colgan says the family has hope: An international support organization called the Fanconi Anemia Research Fund is making new discoveries about the disease every day.
The closest doctors who specialize in the disease are at the Cincinnati Children's Hospital Medical Center. Before last year, the Colgans went once a year for Alicia's checkup.
Now, they go every three months. Soon it may be more often.
Next week, the family will travel again to Ohio for a biopsy.
Colgan, a manager for EcoWater Systems in Wichita, hopes Share the Season can help.
'Gift of hope'
Last year, Share the Season raised more than $180,000 in community donations, a record. It helped 207 families that included 679 people.
"Share the Season is a wonderful program that provides a special gift of hope for families that are normally self-sufficient," said Cheryl Warne, director of emergency services for the Wichita Salvation Army.
The program offers one-time aid to people who haven' been helped by charities in the past. The Salvation Army screens applicants.
The average recipient gets about $700 in assistance, mostly to pay mortgage or rent and utility bills.
"It is heart-warming to see the faces of the recipients light up with joy when they are told their requests have been approved," Warne said.
In its eighth year, Share the Season is a project of the Salvation Army, the Wichita Community Foundation and The Wichita Eagle.
Through Dec. 31, The Eagle will feature a daily story of a family in need and tell how readers can help. Most of those featured will remain anonymous, but their need will be verified by the Salvation Army.
Share the Season is one of the most popular programs launched by the Wichita Community Foundation, said executive director James Moore.
"This is one that seems to gather people's attention and focus," Moore said. "Donors are aware of it, and each year they put it into their plans to help people."
What makes Share the Season successful, Moore said, is that payments are made directly to vendors, such as the bank, the landlord or the doctor.
The foundation provides seed money -- $25,000 this year. All donated money goes to help the applicants.
Some donors provide services to help, such as dental work, hearing aids, glasses and even a few used cars.
Last year, a single mother was afraid to smile because of the condition of her teeth.
"Through the years, I had so many of my own teeth taken out because they were so bad, there were only a few left in front and back," she said. "As soon as that story came out, these dentists called about doing implants in my mouth. It was a miracle."
Two dentists teamed to give her $20,000 worth of dental work.
The woman, 46, cries at how thoughtful the dentists still are.
"It was a miracle," she said. "There were just so many people who helped with everything. I never expected something like that."
Reach Beccy Tanner at 316-268-6336 or email@example.com.
Tuesday, November 20, 2007
Joe has had a fever for a week now. Last Tuesday, school called me at work and told me that he had 103. Whenver school calls like that I think back to the almost daily calls I would get telling me to come get you.
Yesterday we took Joe to the doctor. Even though he seemed better we wanted to make sure he was okay to go back to school. He has missed a lot.
The doctor said he was fine to go to school. So after the appointment we took him to JPDS and kissed him goodbye. About 2 hours later the school called and asked us to get him because his fever went back up.
Now we are a little worried about him, but here is a video I took tonight to show you how he is doing...
He can't be feeling too bad, right. How do you like those skills. Hopefully the doctor will give him something to make the fever go away.
Can you imagine how good he is at that when he is feeling 100 percent?