Wednesday, March 31, 2004
Joe saw me on the computer so I showed him the pictures of him and the elephants at the zoo. I then searched for more animal photos on my computer and came across some of you and Jack at a farm.
Joe pointed to you and said, "Joe."
I wonder how old he will be before he understands that he had another brother. Will he be old enough to be sad about you? I wonder how old he needs to be for that. His sad is going to be different than mine and Mom's and Jack's and special to him. I hope that he and Jack can talk about it.
Monday, March 29, 2004
Mom went to a dinner tonight so I put both guys to bed. I didn't read to Joe from the big Goodnight Moon board book. I pulled a smaller one from his shelf. It was yours.
I was all teary from the start but pulled myself together. Joe and I read a bunch of books and he went to bed like a champ. Then it was Jack's turn. We finished reading his book about Hellen Keller. By the time I got to the end of that I started to get all teary again. It was a very beautiful story. I kept thinking whether we had done everything to save you at the end. What if you had lived but were not physically like you were before you went into the PICU. What if you couldn't walk or see or talk. What would your life be like. What would our lives be like.
Jack is really a beautiful soul. He is very much taken by the life of Hellen Keller. As you remember he loves sign language. I think I told you how he walks up to people who are signing and communicates with them. I think part of it has to do with his relationship with you. He has a great sense of caring. I love that about him.
It was Sam's birthday. Luckily for us, he had it at the zoo. Joe wasn't much for the guided tour, so we headed out in search of elephants and lions. The lioness was roaring and so was Joe.
After the zoo we went to Guy Mason. Even Joe calls it the "Big Boy Park" now. Look who we ran into. Dr. Gonzales and her family. Oh, how you loved her. She has 2 little girls. One is just a baby.
David and Jack had a great time playing.
We're pretty predictable. We all went to Max's for ice cream after we were done playing. Look who is big enough to get his own cones now.
March 27, 2004
Felton Woman Meets Young Girl She Saved
By JONDI GUMZ
Sentinel staff writer
FELTON — Imagine getting a letter from someone you never met that says, "You are my best friend."
That’s what happened to Felton resident Janea Drummond, who donated her blood stem cells three years ago to help a child whose life hung in the balance.
Today, Sayaka Terada is 8, a healthy, active second grader in Sidney, Ohio.
The two finally met Friday.
Drummond, 48, hugged Sayaka, happy she decided to donate.
"I was glad of the opportunity," she said. "That’s what we’re on the planet for."
The two were special guests at a symposium in Washington, D.C., sponsored by the Intercultural Cancer Council.
"It was so emotional," said Marianne Worley, a spokeswoman for Georgetown Hospital. "There wasn’t a dry eye in the house of 1,000."
What brought the two together was the National Marrow Donor Program, a Minneapolis-based nonprofit that in 15 years has facilitated more than 18,000 transplants for people with life-threatening diseases.
About seven of every eight transplants involves a patient of Caucasian heritage.
That’s because it’s harder to match tissue types for blacks, Latinos, and Asians such as Sayaka, who is Japanese, even though the program has registered 5.2 million potential donors.
Drummond, a Chicago native whose heritage is Japanese and Chinese, had joined the registry in 1996 after her mother-in-law alerted her that parents of a 2-year-old girl in Hawaii were pleading for donors.
"I felt like I owed something — things have been good for me," explained Drummond, who has two sons and owns an electrical repair company with her husband.
She signed up.
Four years went by, and the call came, just before Christmas. Her blood cells matched four of the six factors, one more than another donor in the registry.
"If this were my child, I would hope the person would do it," she said.
The procedure can be daunting. Donating marrow requires a visit to a hospital operating room for up to two hours, and anesthesia.
Donating peripheral blood stem cells requires four consecutive days of drug injections to increase the number of stem cells, but it can be done at a blood center or a hospital.
Drummond drove to Stanford Medical Center for the injections and the procedure. She hadn’t gotten up to leave when the courier arrived to fly the blood cells to Cincinnati. The transplant was performed the next day.
Afterward, Drummond had a seven-day headache. She felt like she had arthritis in her hand, she said: "All your bones hurt."
Sayaka was born with Fanconi anemia, an inherited condition that leaves children thin and bruised and leads to bone marrow failure. The number of cases is not documented worldwide, but a registry at Rockefeller University lists more than 3,000 patients.
The disease, named for a Swiss pediatrician, is among more than 70 treatable by a blood stem cell transplant. However, only 30 percent of patients find a match in their family, according to the National Marrow Donor Program.
Sayaka has a younger sister who was not a match. So she, like so many others, had to rely on the generosity of strangers.
Without a transplant, Fanconi anemia patients have little hope of surviving.
Drummond, who has been exchanging letters and pictures with Sayaka for about a year, had hoped to meet her before her family returns to Japan.
"She looked like me when I was her age," she said. "It was so good to see her healthy and vital and plump."
The success rate of the transplants ranges from 40 to 60 percent, depending on the patient’s age and physical characteristics, according to program officials.
"That is why this is such a good story," said Patrick Thompson, spokesman for the National Marrow Donor Program. "This is one of the success stories."
More information on marrow donation is on the Web at www.marrow.org
Contact Jondi Gumz at firstname.lastname@example.org.
How to help
The National Marrow Donor Program, founded in 1987 and based in Minneapolis, offers these suggestions to people who would like to help those suffering diseases for which a blood stem cell transplant could be a cure.
-Join the National Marrow Donor Registry as a potential donor.
-Donate your baby’s umbilical cord at birth.
-Make a financial contribution through The Marrow Foundation.
-Donate frequent flyer miles to help patients travel for treatment.
-Donate blood for transplant patients.
I am not exactly sure why Duncan's dad says things about "an ugly, awful death."I guess he is trying to get people to support his bill. Sometimes you have to say extreme things to get people to act. I hope it works. More importantly, I hope Dr. Hughes is able to help them.
I tried hard to get our insurance company to pay for all of this but was unsuccessful. I had doctors write letters and put together briefing books. Nothing would convince them. If "Duncan's Bill" becomes law that would be a great thing for everyone.
Treatment Eyed for Youngster's Rare Disease
Jim Baron 03/29/2004
CUMBERLAND -- Looking at 8-year-old Duncan Nunes, you wouldn't think about someone at the cutting edge of genetic science.
The Community School second-grader, in the words of his father, Fred, "looks like a normal kid" who enjoys doing normal-kid things.
But inside Duncan's tiny body, the DNA in his cells is breaking down.
That process is by no means uncommon, but unlike the vast majority of people, Duncan's body can't repair itself. He was born with something called Fanconi anemia, an inherited condition that leads to bone marrow failure.
It means, among other things, that he is at great risk for contracting leukemia.
His body is not producing the red and white blood cells he needs, so that even roughhousing with his brother can leave him with bruises his sibling didn’t get.
The usual solution, Fred Nunes says, is a bone-marrow transplant, but that comes with its own set of problems. Because of his cell deterioration, Duncan can't withstand the rigors of such a transplant, which would involve chemotherapy and radiation treatments to effectively kill his immune system so the donor's marrow could regrow inside of him without rejection.
Neither of Duncan's siblings have marrow that is a match for his.
Trying a transplant with bone marrow that matches Duncan's, but is not from a direct relative, "has a high failure rate," Fred Nunes says. Seventy to 80 percent of patients receiving such treatment will die what he calls "an ugly, awful death, and pretty quickly." And those who survive are so prone to cancers and tumors that their quality of life -- for only the six-10 more years that most usually live -- is heartbreakingly difficult.
That is where the cutting edge of genetic science comes in.
Duncan and his parents are pursuing an option called IVF/PGD (in vitro fertilization/pre-implant genetic diagnosis).
The process starts like conventional in vitro fertilization, such as a couple with fertility problems would undergo. But then a test is done to see which fertilized egg would produce a baby that would be a match for Duncan. That egg would be implanted in Duncan's mother, Nancy, to carry to term.
Once the baby is born, material from the umbilical cord can be frozen and transplanted into Duncan.
The process is not cloning, Fred is quick to point out. The new baby would be a regular child in all aspects. "We will wait and see what God brings," he said.
After Nancy Nunes went through her pregnancy, there would not only be a new baby in the family, but perhaps a cure for Duncan -- what his father calls "a decent chance at a decent life."
One of the top doctors in this field, Dr. Mark Hughes of Wayne State University in Detroit, has already worked up the tests to determine which egg would produce a matched sibling for Duncan. While some facilities charge as much as $100,000 for this type of work, Hughes, who works with many Fanconi patients, is willing to do it for $2,500, Fred said.
Initially, Blue Cross/Blue Shield of Rhode Island balked at paying for the procedure.
"Blue Cross is a caring organization and has the best intentions at heart," Fred Nunes says. "But like any other large organization or institution, they have their own bureaucracy, and cutting through that bureaucracy can be difficult sometimes."
But after being turned down twice, he related, "we finally got through to the right people and, much to Blue Cross' credit, they made the right decision to cover a part of this."
While it will cover the in vitro fertilization procedure, the company doesn't want to pay for the pre-implant genetic diagnosis. Nunes said the family will pay for that procedure. "Blue Cross is not a villain in this," he emphasizes.
Fanconi anemia is rare, he said, affecting only about 150 people in the entire country, three of whom live in Rhode Island. Only a portion of those 150 would be able to take advantage of the treatment.
The only patients who can opt for this regimen are those with parents of child-bearing age.
Fred and Nancy Nunes contacted their state representative, Donald O. Reilly, asking him to submit legislation to mandate that health insurers in Rhode Island provide coverage for Fanconi anemia, "so no one else has to go through what we are going to," Fred says.
"It is an economic decision being made by insurance companies not to cover this," Reilly said.
"These are good, solid, American people," Reilly said. "They pay their insurance premiums. To have this denied to them is incomprehensible."
The bill was transferred this week to the House Finance Committee, away from the Corporations Committee, which usually handles health insurance bills. Reilly says he hopes the bill will get a hearing at which the Nunes’ can testify. Fred Nunes says he wants to testify "to put a face on the issue" for legislators before they vote.
©The Pawtucket Times 2004
Thursday, March 25, 2004
This past weekend we went out to St. Michaels. Papa Sy was there all by himself so we went out for the day to keep him company. We had a really good time.
I found this photo of you out there.
While we were there Jack started to talk about what happens to people after they die. I said that some people believe that a person comes back to earth as something or someone else after they die. It is called being "reincarnated." Jack said that you came back as a tree after you died. According to Jack, you are a tree because a tree is something that lives forever.
As for Jack, he said he will come back as a falcon because they are swift and sure. He said that after Mom dies, she'll come back to earth as a koala bear because they are so nice. Joe will come back as a pig. And I have to admit that I am pretty bummed about my reincarnation. Jack said I'll be a "shrieker." I asked if he meant a "shreik owl," and he said "no, a 'shreiker,'" whatever that is. I asked him why. He said because I yell. I almost never, ever, ever yell. You know that. There was the one time when we were driving back to our apartment in Minnesota from Galyan's after I drove all over Minneapolis to get you guys the same pair of cleats. I think that I blew up because of all of the pressure we were under. And I know there has been one or two other times, but I guess next to Mom anyone is a shrieker. I should talk to him more about this. How about a lion - they sleep 22 hours a day (I learned this from watching "Be the Creature" with Joe). I could get into that.
Maybe you're the dogwood in front of the house. It has buds on it. Remember we bought it for Mom for one of her birthdays. I'll post a photo on here as soon as it blooms. Also, I will tell you what we got her for this birthday -- but a little later -- it is a surprise.
A couple of things about Joe.
1. He is at his most adorable.
2. He loves lions and roars all the time
3. He likes to eat popsicles
4. He calls Pokemon, "Kokomon"
5. He loves watching Ice Age
Joe is so cute right now. He has your impish smile. In his mind he is thinking, "I have dimples and I am not afraid to use them."
He gives kisses and hugs and screams "Daddy" when I walk through the door after work. When I sneeze he says "Bless You." He has more and more to say each day. Normally, Zhenny is who can understand him best. He likes to say "Deeelicious" and "Geeegraphic." Delicious is something he got from watching Jungle Book 2 and Geographic is from National Geographic, which he watches on TV. He likes to watch Be the Creature with the Kratt Bros. and Jeff Corwin.
Joe's favorite place is the zoo, his favorite animal is the lion and he thinks he is one. He likes to prowl around on all fours and lets out the biggest roar. I am glad that it is getting warmer out so he can spend more time at the zoo with Zhenny. I wish there was a way to post his roar on here - it is ferocious!
One of my most favorite things that I get to do is eat popsicles with Joe. Most nights in the evening after dinner, Jack eats his bowl of ice cream, and Joe and I share a frozen fruit bar. With Joe grabbing at it, I try to hold the stick while he trades licks with me. This is when he usually unleashes, "deeelicious." It is a very sweet thing we do together. Kind of ironic (hard to explain that word) since we were not supposed to share food with you.
When we went up to Evan's Bar Mitzvah we drove into the city and went to the Pokemon store at Rockefeller Center. Joe bought his first Pokemon, appropriately Pikachu.
He reminds me a lot of you. He is very sweet. Jack is being a good older brother. I only wish that you and Joe had more time together. You'd like him.
I love you, Hen.
I had a dream last night. You were in intensive care. I said to Mom that we should just take you home. I said that it was obvious that you were not going to live. I said that I didn't want them to poke you any more or put any more lines in you. I said that it would be good to get a clown to come over.
When I told this to Mom this morning she pointed out that it is a change from the way I used to think when you were alive. I never would think or admit to myself that you would die. A lot of people struggle with a balance between "quality of life" and trying to get people to live longer by poking them a lot and giving them a lot of medicine. I used to think that if we just "toughed" it out for a while everything would work out. Your quality of life was good even while we struggled to have you live longer.
Mom told me that she is especially sad right now. Last weekend she told me that she was thinking back to those times that you would insist on going with her when she would go out for a run. The two of you would jog around the block or through the alley. Then you'd come in and rest and she'd go for a longer run. You had a lot of spirit. More than that, you had a lot of love for your mommy. She misses you so much.
Tonight Mom has to travel for work and I am worried that her sadness will be worse away from us. That happens to me. It is Mom's birthday in 10 days. I know that is a rough time, too. We'll be good to her.
Lately, I have really wanted to come out to the cemetery. I think not writing makes me feel even more disconnected from you.
I love you.
Saturday, March 20, 2004
Jack was Mario - as in Super Mario Bros. - for Purim. He was very excited about his costume. Mom did a great job piecing it together. I think moms grade themselves on their costume making abilities. It is very important. I donated an old shirt of mine that Mom cut up to make the suspenders. I bought it at the Mall of America when we were there for transplant. I am glad to be able to give "the shirt off my back" for my family.
Jack is doing great. He is reading books all by himself. We went to science night last week and Jack was beaming. He is such a good kid.
We all went up to New York for Evan Belkin's Bar Mitzvah. It was nice to travel all together. Jack was certain that the trip was all about going to the Pokemon Store in Rockefeller Center. The best thing is that he wound up having a great time at the reception. He sat with a bunch of other kids his age and ran around and ran around for hours.
Am I cool enough to be in this family?
At the Bar Mitzvah itself, Jack was very fidgety. I was pretty fidgety, too. I noticed lately that I have a lot of trouble sitting still for long periods of time. I look at other people in meetings and am amazed that they can sit in one position for hours. Well, at the Bar Mitzvah I sat and stared at all of the plaques on the wall of remembrance. I liked them better than the ones at Adas Israel because these plaques had the years when the person was born and died. On the Adas plaques no-one knows that you only lived 7 years and the guy underneath you lived 99 or whatever. I want everyone to know you died when you were only a kid. I don't know why that is so important to me.
At one point during the service, Jack rested his head on my lap. He looked up at me and I looked down at him. We kept looking at each other - really deeply, without blinking - and I started to cry. Neither one of us looked away. I think for a moment I saw you in Jack's face. It was all very emotional.
The service was very nice and Evan did a great job leading some prayers, reading his haftorah and talking about his portion. When it was Lisa's turn, she said the most beautiful things about Evan.
Evan, my son, today you will become… yourself.
You thought I was going to say “Today you will become a man,” now, didn’t you?
Well, in a way, that’s what I mean. You are well on your way. And when I look at you today, in your very cool suit, with your very straight teeth, gaining on me in height every second, and when I look back at all the years made out of moments that led up to this moment, I see a sharp, bold outline of the man that you will be.
That man will be a loving man. I know that because I have seen you with your cousins, and with your following of young children, who adore you because you adore them and because they see in you someone they sense they want in their corner, someone they want to be like.
He will be a creative man. One who looks at the world and sees a story, a movie, a drama, a scene, a Technicolor tableau that the rest of us just don’t see. He will write, or film -- or not. Definitely he will dream. Whatever he does, it will use his glorious imagination.
He will be a learned man. Devouring books. And he’ll need a whole lot more book shelves than you have in your room already if he is to keep reading at the rate you’ve been going at for years. I remember reading you Harry Potter. You became impatient; I wasn’t going fast enough. So you stayed up all night, finished the umpteen pages on your own, and carried the book down to breakfast the next morning like a treasure. “Mommy,” you said, “there’s a whole world inside this book.” May you continue to explore those worlds.
He will be a funny man. I am in a holy sanctuary now. So I can’t repeat many of the quips and lines and comebacks you’ve come up with over the years. But trust me, he will be funny.
He will also make a mean marinara sauce, and know the words to every song he’s ever heard as well as the cast and plot of every movie written at the turn of this century, and the tricks of every video game.
He will really, really, really love his dog.
He will have warm and sustaining Jewish memories, of Havdalah during an eclipse at the Shabbaton, and singing Adon Olam to the tune of Carmen, and doubling with laughter at the Purim spiel. When he needs them, these memories will anchor him always.
And he will be a kind and empathetic man. The sort who, as a child, was only awoken from sleep by one thing – the sound of his baby brother crying. The sort who, hearing that the son of a friend was sick, packed up his entire Pokemon collection and mailed it off to Washington, D.C. The sort who, when he got his braces off last week said “Mom, let’s go show Grandpa Mike right now,” and not just because it would make you a little later for school, but because you knew Grandpa Mike had had a really bad week.
When you are fully and completely a man, you will look back and see how these moments from your past, including the one we are sharing right now, all led you to wherever you are in your future.
Like the film you put together for your mitzvah project, the whole of your life will be a collage of moments – some you already know, some you can’t yet even imagine. The whole of who you become will be made of slivers of me and Daddy, your grandparents, your brother, your aunts and uncles and cousins and friends, your careful plans and your chance encounters.
The story – your story – will be how you arrange all these. How you meld them together, and make them yours, and become yourself.
Yes, some of who you are is in your genes, and some is out of your hands. But most of it is choice and work and trust and love.
Today, Evan, you continue to become yourself. And the world is already a better place because of that.
She is a very special friend, mother and writer. We are lucky that Lisa and Bruce and Evan and Alex came into our lives. It would not have happened without you.
I took this picture of Jack during the reception. He looks pretty grown up now dontcha think.
I love you so much.
Monday, March 08, 2004
Australia's biggest-selling daily newspaper
Designer Baby to Cure Brother
AUSTRALIA'S first "designer" baby, a boy, will be born in August.
How it works
Doctors have used a controversial IVF technique pioneered by Monash IVF scientists to ensure he will be healthy and a tissue match for brother BJ, 4, who has an incurable genetic disease.
Like Victorian toddler Christina Curkowskyj, BJ needs a bone marrow transplant to live.
His brother will provide bone marrow in stem cells collected from his umbilical cord at birth.
Christina's family fought for the right to get access to the same IVF technique, pre-implantation genetic diagnosis, in 2000.
It is already widely used in Victoria to test for life-threatening genetic disorders.
But it is illegal in this state to use it for tissue-matching to guarantee a baby can provide a sick sibling with lifesaving stem cells.
Christina's parents conceived naturally and the healthy baby was a perfect tissue match.
IVF laws are different in NSW, and Sydney doctors used the sophisticated IVF technique to create Australian medical history.
A delighted Leanne, 34, of Tasmania, is now 14 weeks pregnant with the boy who can offer BJ the gift of life.
"This was our ultimate aim, but we thought it was a bit pie in the sky stuff to begin with," she said.
"We were going to have another child anyway. We would have gone naturally and taken the risk if this had not worked."
Had Leanne and her partner, Stephen, conceived naturally, the baby could have carried or developed the rare incurable immune deficiency, hyper IgM syndrome.
The syndrome, reported in about only 30 children in Australia, leaves BJ prone to infections. He relies on weekly hospital visits for antibiotics and blood transfusions to boost his immunity.
He is responding well, so doctors are not planning to carry out a bone marrow transplant as soon as his brother is born.
"It's an insurance," Leanne said. "We are hoping that it might never need to be used, if a cure is found in time."
If BJ is still doing well in August, the baby's umbilical cord blood will be stored.
Embryos were created at Sydney IVF by fertilising Leanne's eggs with Stephen's sperm.
When they were five to six days old, cells were removed and their DNA tested. It took three cycles of IVF to create a viable embryo that was neither affected by the condition or a carrier of it – and which was a tissue match for BJ.
Stephen and Leanne, who are withholding their surname to protect their son, went to Sydney just before Christmas to have the embryo implanted.
Stephen, 35, said: "I couldn't care less what anybody thinks.
"It's not like we are having the baby just for BJ."
"I fully recognise that there will be people that don't agree with it," Leanne said.
"But we want people to know that it can be done here, and you don't have to go overseas."
Stephen said: "There was a family from Melbourne going to America for the same treatment, while we were going to Sydney."
Sydney IVF started offering PGD to find a tissue match for an existing sibling two years ago.
About seven couples have been through the program, though the child of the first family died before the mother became pregnant.
There has been only one other known case, in America, of a child being born to save another.
Adam Nash was conceived in America in 2000 to save his sister, Molly, who had a blood disorder.
Wednesday, March 03, 2004
Tuesday, March 02, 2004
I saw this on the news today. It has been 12 or 13 years since his little boy died. Huh. I want to think about it for a bit.
Eric Clapton Retiring Two Famous Songs
POSTED: 2:51 p.m. EST March 2, 2004
NEW YORK -- Eric Clapton is putting away two of his best-known songs.
Clapton said he was performing in Japan when he realized he couldn't perform the songs "Tears in Heaven" and "My Father's Eyes" any more.
Both songs deal with the loss of his 4-year-old son Conor, who fell out of a New York apartment window in 1991. It's not that the songs are too painful, it's that Clapton is stronger now.
Clapton said he doesn't feel the loss anymore, which is so much a part of performing them. He said he can't connect with the feelings he had when he wrote the songs, and he doesn't really want them to come back.
He said he's happier now and maybe later he'll introduce the songs again from a more detached point of view.
Copyright 2004 by The Associated Press.
Someone showed this to us at the Purim Ball. They didn't get this exactly right when it comes to Molly and Adam. I am surprised they got it so wrong because this is a pretty important publication (that's another word for magazine or book).