Saturday, September 30, 2006

Joe's birthday "pageant" started last night. Overdoing it is how we roll in this family. Tomorrow we are going to have a bunch of his friends from school over to -- bet you can't guess -- play baseball for his party. After the party we are going to go to the last Nationals game of the season. They are playing the New York Mets.

So last night Joe and his team the Pirates had a game and his cousins came to watch.

Even little cutie cousin Noah came. He looks a lot like Uncle Andy. Noah was born after you died. Maybe he'll read this one day and know you a little.

Friday was a beautiful fall night. Perfect for baseball. He plays at Macomb Park - the Choo Choo Park as you knew it.

They cheered him on and in true Joe fashion he played to the crowd. He definitely likes to show his stuff, and didn't disappoint.


Look how big Michael and Joshua are. I am glad to see in this picture that Jack seems excited for Joe. Joe gets on Jacks nerves a lot by just being a little brother. Kinda like how Jack was with you.

After baseball we went to Cactus Cantina for dinner. Joe loved all the attention and the company of Joshua and Sam. We then went back to Calvert Street for birthday cake. When it got late Emma and Rachel went down to Rachel's house to sleep and the boys camped out all over our house.

Michael is very into music. He looked through all of our CDs and kept asking me and Mom if he could put stuff on his laptop, which he brought with him.

I wondered a lot what it would be like if you were still around. In groups, whether it is your cousins or your friends or your classmates, I am very aware of you not being there.

I miss you.

Wednesday, September 27, 2006

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.

Tuesday, September 26, 2006

Uncle Stinky - or Uncle Bill went to see you yesterday at the cemetery. How awesome is that. You had visitors two days in a row. I love Bill for loving you. He's a great guy.

Monday, September 25, 2006

On Friday night we went over to Papa Sy and Nana's for dinner before going to Erev Rosh Hashanah services. It was nice. All of your cousins were there. Little Noah is quite the cutie and can be quite the shreiker.

Papa Sy, in Papa Sy style, presented Mom, Aunt Abby and Uncle Andrew with a book that he wrote about his life. It is called, "My Cruise." People can even buy it on the Internet.

I scanned through it and of course looked for mention of you. In addition to these pages, the last photo in the book, actually the last page of the whole book, is of you.

Mom and I sat in a row in the sanctuary that was next to the plaque with your name. I said to Mom that it will be very emotional to have Jack and Joe's Bar Mitzvahs in the same sanctuary where we had your funeral, where your body lay in its casket.

We went to the cemetery yesterday. Jack and Joe were playing at Susan's with Alex and Simon. I took a blanket out of the back of the minivan and spread it out next to your headstone. Mom and I lay down on it and Mom fell asleep for a little bit. I just sat and thought. I don't remember what I was thinking about. It even rained a tiny bit but not enough to make us move. And we saw a baby deer.

There is someone who was recently buried very close to you. She has the name of an old Jewish lady. I forget what it was. She doesn't have a headstone yet, so I don't know how old she was. I will report back but I bet she was in her eighties or nineties.

We visited Grandma on the way out. Mown grass always collects on her headstone. I used the blanket to sweep it all away. We left shiny smooth stones on both of your headstones.

The bummer about Rosh Hashanah starting on shabbat is they didn't blow the shofar. Jack said that someone came to school last week and blew the shofar to the tune of "Hail to the Redskins." That is one of the coolest things I've ever heard of. Must have done something 'cause the Redskins won their first game of the season yesterday. The guy who owns the Redskins is Jewish and we just found out last week that the coach of the Redskins when I was growing up, George Allen, was married to a Jewish woman. Maybe Jack's saxophone playing will lead to shofar blowing... and Hail to the Redskins shofar blowing.

Tekiah Gedolah Touchdownah!

When I was sitting with Mom at services I was looking around and I saw all of these people sitting with their families and it looked very sweet. Kids had their heads on the shoulders of their moms and dads -- people were whispering in each others ears and holding hands -- everyone was just really close. The High Holidays are important just for that. I was trying to think of other times when you get to sit close like that. Maybe movies, but that's about it.

I was remembering how I got big enough to put my arm around Pop Pop Teddy when we were sitting next to each other at services and I really liked that a lot. I miss sitting with him and sitting with Grandma. Grandma used to take her shoes off during services to try and stay comfortable. She loved going to High Holiday services to see everyone she hadn't seen for a while. I used to give her grief for gossiping. Even though I was kinda joking, I was probably too hard on her. But she was okay.

I guess Pop Pop Teddy is sitting with Jeri now. I wonder if they still go to services at Churchill, which was my high school. They have services there because there are too many people to fit in the sanctuary at Har Shalom. That is where we had Grandma's funeral. I remember being fine through that whole service and then just completely falling apart at the end. But I fell apart because you were so sick and I was so scared. I must have put my head on Mom's shoulder, but the only thing I really remember is sitting there okay and then suddenly weeping uncontrollably.

I miss both of you uncontrollably. Happy New Year.

Wednesday, September 20, 2006

I missed this when it was first in the newspaper last month, but ran into it today on the Internet. Jeff is friends with someone we know. He writes a lot about death, especially death of a child. I am glad he does, but I wonder why.

It made me think of something I wrote to you earlier this year about being bummed about not dreaming about you. Although it is hard to have "quiet reflection" in the evening -- especially after Joe has been bouncing off the walls, carpeting and couches -- I will have to try that. Maybe looking at your face isn't enough.

Jack pointed out this morning that today is the last day of summer. Everything officially starts to die now.

'Visits' from late loved ones provide solace

Jeffrey Zaslow

Saturday, August 5, 2006

In 1999, Glen Lord's 4-year-old son died from complications of a tonsillectomy. Not long after that, Lord began having dreams in which Noah, his son, had grown into a healthy young man.

Lord felt comforted by these "visits." But in 2002, he had a dream in which Noah introduced him to two boys. "He explained that he had to go, but these boys would be staying with me," recalls Lord. "When I woke up, I told my wife that I knew I'd never dream about him again. And I haven't."

Lord, who runs a manufacturing firm in Nashua, N.H., believes that final dream was a reassurance from Noah that he was OK, and that there were other children who needed to be loved. In late 2002, Lord and his wife adopted two brothers through a Russian adoption program.

Every night, millions of people are visited by deceased loved ones. In dreams, the living and the dead embrace, converse and reach understandings. What are we to make of these encounters? Are they merely emotional responses to dreamers' grief? Or, as research suggests, are there patterns to these dreams that could explain the inexplicable?

I met Lord last month in Dearborn, Mich., at the annual conference of the Compassionate Friends, a support group for parents whose children have died. About 1,100 parents attended, and the sessions on dreams and "after-death communication," or ADC, were standing room only.

Attendees learned that basic "grief dreams" tend to be fragmented and filled with symbolism. There are often common themes, such as travel: Dreamers get off an airplane or train, and their late loved ones travel on without them.

"Visitation dreams," on the other hand, are usually more vivid, with less need for interpretation. In these dreams, those who died of serious illnesses are often healthy; if they were in a wheelchair, they can walk. These dreams can feel "sacred" to those who've had them, says Bill Guggenheim, a co-founder of the ADC Project, an independent research group.

Women are more open to potential messages in dreams, while men may underreport dream experiences, researchers say. Guggenheim theorizes that men fear being perceived as weird or too grief-stricken. "They wonder what friends and bosses will think of them," he says.

In U.S. surveys, about 60 percent of women and 40 percent of men say they've dreamed about late loved ones, says Kelly Bulkeley, former president of the International Association for the Study of Dreams, and a visiting scholar at the Graduate Theological Union in Berkeley, Calif.

Humans have been chronicling visitation dreams since the days of prehistoric cave paintings, and many cultures today embrace the concept. Americans, however, are more inhibited, researchers say. Our lifestyles — shortened sleep patterns, late-night TV viewing, alarm clocks — limit opportunities for the deep-sleep dreaming that leads to dream recall. And a lot of us discount anything that can't be proven by science.

"The scientific skeptical tradition in the U.S. says that dreams are random nonsense," says ulkeley.

This is a "tragedy," because people who have these dreams feel belittled, says Jeffrey Long, an oncologist who founded the After Death Communication Research Foundation. He has collected testimonies from more than 1,000 people. His Web site,, allows the bereaved to share dream experiences.

Brain-imaging research suggests that the prefrontal cortex — the part of the brain engaged in rational thinking — basically goes offline when we sleep. The parts of the brain that then become active are more engaged in imagination and emotions, which could explain visitation dreams.

Many people were grateful to discuss their dreams at the Compassionate Friends conference. I sat in the audience, surrounded by parents who lost children. I had put my cellphone on vibrate, and two of my kids kept calling. (Nothing important, it turned out.)

Normally, I'd be annoyed; the kids knew I was working. But on that day, I felt blessed. All around me, people spoke of how they yearned to go to bed at night, in the hope they'd be contacted by their kids again.

The session was led by Carla Blowey of Montrose, Colo. In 1991, her 5-year-old son, Kevin, was hit by a truck while riding his bike. He died in Blowey's arms.

Since then, she has kept a dream journal, and she finds the process healing. Dreams of Kevin have been a respite from the grief of her waking hours, and even painful dreams have brought clarity. Once she dreamed of entering a house and seeing Kevin on the stairs, crying because he'd been left alone. She sat on the stairs and comforted him.

She asked the attendees for words conjured up by the dream. They called out: "guilt," "love," "helpless." She told them her interpretation: This was the house of death, and she should have died first, so Kevin wouldn't be alone there. The dream allowed her to recognize how heavily this weighed on her.

Some at the session said they were unable to dream about loved ones. Sarah Brummel, a 26-year-old attendee from Santa Cruz, Calif., offered advice. Since her brother, Gregory, died in his sleep in 2003, she has been dreaming about him easily. Her mother, however, longed to dream about Gregory but couldn't.

Brummel encouraged her mom to stop watching TV before bed and instead spend a few moments in quiet reflection. "After that, dreams started coming," Brummel said.

Researchers can't say whether such dreams are visitations or merely "expressions of our deepest wishes," says Bulkeley. "It's an unanswerable debate."

But as Blowey told that crowded room of grieving parents, a dream about a late loved one is often a gift. "Don't overanalyze it. Accept it with gratitude."

Like I said, it is all about timing.

One day later and the whole world would have been commemorating the day you died.

Tuesday, September 19, 2006

I read this story in the newspaper this morning. You are the patient they are talking about; you had HSCT, GVHD and IFI. It was Aspergillus that ultimately killed you.

This is the photo that was in the news story. It must be Aspergillus. It is weird to see what the fungus that killed you really looks like. I guess it exploded all through your body when you had sepsis.

But nothing is ever as simple as it seems. They were probably testing the medicine mentioned in the story way back when you had GVHD. It takes a long time to get a new drug approved. Maybe they even tried it on you. I don't remember anymore. Who knows.

All your doctors will be in town next month for a Fanconi anemia scientific meeting, and I should see them then. I signed up to go. Not exactly sure why, but it is good to stay connected. I guess I will ask Dr. Gillio or Dr. Wagner about this when/if I see them.

Dr. Hughes is here in Washington this week for a conference. Mom was invited to go to that but I am not sure she is going to make it. We heard some good news from a family he is helping whose kid has Fanconi. Hopefully everything will work out okay. I am keeping my fingers crossed.

Even though I am probably thinking too simplistic about this Noxafil thing - I still am not feeling too good right now. It all comes down to timing. Bad timing in our case. Clearly, you were born and transplanted (and died) too early.

I was thinking if I wrote a book it would be called "Everything Leads Back to You." There are obvious things like this story and on Sunday when I went to an event and saw your old pediatrician, Giorgio Kulp, and then some rabbi talked about someone who needed a bone marrow transplant (he was telling a story about Jay Feinberg, who not only lived but was very helpful when we were looking for a match for you), but also things that I see or experience everyday that seem totally unrelated to you. But to me they trigger a memory that leads back to you.

I like that. Not a day goes by without thinking about you. A picture of the two of us is on my nightable next to my lamp, so your face is the last thing I see before I turn out the light.

Noxafil Treats Invasive Fungal Infections

Schering-Plough Corporation today reported that the U.S. Food and Drug Administration (FDA) has approved NOXAFIL(R) (posaconazole) Oral Suspension for prophylaxis (prevention) of invasive Aspergillus and Candida infections in patients 13 years of age and older who are at high risk of developing these infections due to being severely immunocompromised, such as hematopoietic stem cell transplant (HSCT) recipients with graft-versus-host disease (GVHD) or those with hematologic malignancies with prolonged neutropenia from chemotherapy. NOXAFIL is the first and only antifungal agent approved by FDA for the prevention of invasive fungal infections (IFIs) caused by Aspergillus species.

Invasive fungal infections most often occur in people who are immunocompromised or immunosuppressed, and are increasingly caused by moulds such as Aspergillus. IFIs are a leading cause of death in these high-risk populations. Patients undergoing hematopoietic stem cell transplant or chemotherapy for hematological malignancies such as acute myelogenous leukemia (AML) or myelodysplastic syndromes (MDS) who develop IFIs have a high mortality rate of 60-90 percent.(1)

The NOXAFIL approval is based on results of two head-to-head randomized clinical studies, the largest prophylaxis studies conducted to date in these high-risk patient populations. A total of more than 1,200 patients were enrolled in these studies, which demonstrated substantially fewer breakthrough Aspergillus infections in these patients. In high-risk neutropenic patients, prophylaxis with NOXAFIL was associated with decreased all cause mortality versus the comparator drugs.

"NOXAFIL can help prevent patients from developing life-threatening invasive fungal infections while being treated for serious conditions, such as acute leukemia or graft-versus-host disease," said John Perfect, M.D., Professor, Department of Medicine, Division of Infectious Diseases, and Director, Duke University Mycology Research Unit. "With this FDA approval, NOXAFIL offers physicians an important new therapeutic option for preventing invasive fungal infections in patients at high risk," he said.

"We are very pleased with today's FDA action and what it means for critically ill patients who are at high-risk for acquiring these fungal infections," said Robert J. Spiegel, M.D., chief medical officer and senior vice president, Schering-Plough Research Institute. "The approval of NOXAFIL, a product discovered and developed by Schering-Plough, reinforces our ongoing commitment to improving treatment options for patients facing life-threatening diseases."

Noxafil Treats Invasive Fungal Infections
09.18.06, 12:00 AM ET

MONDAY, Sept. 18 (HealthDay News) -- A new molecular drug designed to prevent fungal infections in post-surgical patients and others with weaker immune systems has been approved by the U.S. Food and Drug Administration.

Schering Corp.'s Noxafil (posaconazole) contains a substance that has never before been approved in the United States, the FDA said in a statement. The drug was approved to prevent infections caused by certain molds and yeast-like fungi called Aspergillus and Candida.
While people with healthy immune systems are normally unaffected by these fungi, they tend to cause invasive infections in people who have had bone-marrow transplants and people with low white blood cell counts, the agency said.

Noxafil's safety and effectiveness were evaluated in clinical trials involving 1,844 people between ages 13 and 82. Common side effects included nausea, vomiting, diarrhea, rash, a drop in blood potassium levels, and in rare cases, problems with heart or liver function.

The drug should be taken with a full meal to allow for adequate absorption into the body, the FDA said.

Monday, September 18, 2006

Despite rare illness, positive outlook shines
By Melissa A. Hoffmann/ Staff Writer
Friday, September 15, 2006 - Updated: 05:50 PM EST

Sam Hoffman likes to spin. Sitting on a swivel barstool next to the kitchen table, he pushes himself around and around until any other person would be sick - particularly after eating the amount of candy Sam has consumed.

Anyone would think that the eight year old is just a normal, energetic third grader. Except that he’s not.

Today, Sam is at New York City’s Sloan-Kettering Cancer Center, awaiting a bone marrow transplant.

At 11 months old, Sam was diagnosed with Franconi Anemia, a rare genetic disorder affecting only 3,000 people around the world - although only half of those cases are diagnosed. Manifesting symptoms of the disease, he was born with a single kidney and a second thumb on his right hand (which was removed shortly after his birth).

Sam and his dad.

’As healthy as it gets’

Last Thursday, Sam and his family - his parents Judy and Jeff, and older sister Caren - took a break from their frantic packing and sat around the table to give a visitor a quick lesson in Sam’s disease and where they go from here.

Fanconi Anemia, Jeff explained, is a bone marrow failure disease, and a rare genetic disorder. The parents both have to be carriers of the gene - and if that is the case, their offspring have a 25 percent chance of being born with the disease.

"It’s like hitting the gene pool lottery," Judy said, noting that the disorder causes recessive traits to become dominant: short stature, fair complexion and hair.

F.A. can lead to other diseases, such as leukemia, diabetes and other cancers. Every six months, Sam has undergone "bone marrow aspiration," involving the removal of a sample of marrow from the hip for testing to make sure no leukemia cells are developing. At this point, Sam is clean.

However, he is transfusion-dependent, requiring monthly procedures.

"He’s as healthy as it gets, going into transplant, for a really sick kid," his mom said, adding that this is where one wants to be heading into a bone marrow transplant. Treatment is much harder if leukemia is already developing.

Funding = research

Sam’s parents are not only their son’s greatest medical advocates, but they have worked hard to raise money for the Fanconi Anemia Research Fund as well. In fact, the Hoffmans are among the top five F.A. fundraisers in the country, raising $100,000.

"It’s an orphan disease," Judy said, explaining their motivation. "It doesn’t attract any money."

Jeff pointed out that the fundraising done by F.A. families pays off. When Sam was born, he would have had a 15 percent chance of surviving a bone marrow transplant. Today, that chance is 80 percent. "That’s thanks to research," Jeff said.

"All of the patients who have Sam’s medical characteristics are all alive and well two years post-transplant," he added.

The transplant should happen on Sept. 20 or 21. This week, at Sloan-Kettering, Sam was "tattooed" for radiation purposes; before the transplant occurs, he will undergo massive radiation to basically kill his immune system.

"He’ll be sick as a dog," Jeff said. Sam, still spinning, nodded.

The actual transplant takes five minutes, Jeff continued, and involves injecting the healthy marrow into a central line. The recovery - during which his family will remain in New York, for about six months - is the hard part. But by day 15 post-transplant, he should be feeling better.

"The only part I don’t like is the recovery," Sam said. He stopped moving for a moment to think. "If I had a choice between going to transplant and not getting better ... I’m fine with it."

All in the family

When Sam loses his hair from the radiation treatment, he’ll have a partner. "Daddy’s going to go bald too," he said. Jeff confirmed that he will shave his head as a sign of support for his son.

Judy and Caren will support Sam in spirit. "I worked long and hard to grow this out," Caren said, holding up her own long braid.

Despite her reluctance to shave her head, Judy said Caren is a great sister. "She’s the best big sister and daughter and person," she said. "She is going to be such a huge, huge help."

Sam will probably spend many hours in New York on his favorite pastime: video games. He said he wants to create games when he grows up, and noted that he can beat his sister any time. It’s all in the thumb.

He explained that his deformed thumb lets him push more than one button at a time, leading him to win many a game. His mother said that when she suggested more surgery to correct the thumb after transplant, Sam said no - it would remove his video game advantage.

Community support

A group of Harvard residents have joined together to raise funds to help the family with their stay in New York. "[F.A.] crushes you financially," Jeff said.

Judy, Caren and Sam will be staying at the Ronald McDonald House in Manhattan (Jeff has a studio apartment in New Jersey, where he works), at a cost of $35 per night. This doesn’t take into account any other expenses, such as food for Judy and Caren, or Sam’s medical bills.

The group will have a booth at this weekend’s Fall Festival, and will hold a walk-a-thon at the McCurdy track on Oct. 15. Sign-ups are available at the Fall Festival.

Not to be outdone, Caren’s eighth-grade classmates are planning a car wash for Saturday, Sept. 23, from 9 a.m. to 2 p.m. at the Transfer Station.

The Bromfield community is rallying round Caren: her teachers will send her a week’s worth of work via the Internet. She will work with a tutor in New York as well (at a cost of $45 per hour, reduced from the actual rate of $110 per hour).

And a Harvard family is renting Judy’s home while they are in New York. "Another Harvard family is helping us," Judy said. "This community has been great."

Strong mind, strong body

Sam’s parents have worked hard to make sure that his life has been as normal as possible. "He’s got a great, great, great quality of life," Judy said.

Jeff said that he and Judy have worked to instill a positive attitude into their children from the moment they were born: "Strong mind, strong body."

"You never know what you can do," Judy said. "You have to keep trying, and if you have a positive attitude you can succeed - and we will."

That being said, Judy said that they have not hidden any of the disease’s more frightening aspects from their son. "We feel as parents that would be wrong to do," she said.

Jeff said that he has had in-depth conversations with his son about death.

But last week Sam’s positive outlook was shining through. He cheerfully said that not only did he get a perfect match on the National Bone Marrow Donor Registry, he got three perfect matches.

"There’s nothing wrong that can happen with three perfect matches," he said. "If one fails we can quickly do another."

He took another spin around on the chair. "I’m one of the luckiest people on Earth."

For updates on Sam’s progress, visit him online at For more information of Fanconi Anemia, visit

Last week was a week of firsts. On Thursday, Jack had his first saxophone lesson, and on Friday, Joe had his first real baseball game.

Jack had been wanting to learn to play my grandfather's, your great-grandfather's saxophone. I am sure you saw it. It was down in the basement in the black case. Jack has blown on it from time to time, but he wanted to learn how to play it for real. It is a beautiful instrument. It is silver. When Jack blows on it I think of Lisa Simpson.

Speaking of the Simpson's, that is about the only cartoon Jack is interested in anymore. Jack, Joe and I went to see a cartoon movie about baseball called, Everyone's Hero. Joe loved it, of course, but Jack was kinda bored. He is at the point where he prefers live action movies over cartoons. Realizing that made me sad, but that's life.

Jack, Mr. Grownup, is already thinking of the band that he can form with his buddies. I'd love for him to be in a band someday. I don't have a musical bone in my body, but I love listening to Mom and Jack play the piano.

And your little guy Joe finally got a chance to show his stuff. He is on the Pirates in the Capitol City Little League. Originally the team was the Red Sox but they changed it for some reason. Too bad.

The team is for 5-7 year olds but since Joe is almost 5 years old I figured he'd be okay. There are other 4 year olds on the team. We know a lot of the other parents already so that's nice.

Joe played really well. He got two hits and made it home. I am glad he is playing with a whole team now. He has lots of talent but he needs to learn about being a good sport and a good teammate. I tell him all the time that he needs to listen to his coaches. He isn't a very good listener and that is frustrating. Hopefully it is just me he doesn't listen to.

Here are two nice things I heard the past few days. During the game, right after Joe got a hit that went past the infield, the two coaches for his team said, "Who's his dad?" They were impressed with how far Joe can hit and they were thinking that someone is giving Joe good coaching.

I said I was Joe's dad, but I couldn't take any credit. That is the truth. He was born with great skills (something he got from Mom, not me) and he works very, very hard. But, of course, I was smiling inside.

Then on Sunday, Joe and I were playing baseball on the Mall near the Washington Monument. Joe insists on practicing all the time because he wants to be a professional ballplayer some day. Well a passerby who was watching him hit yelled over to me, "That kid will take care of your retirement." They meant that he's so good he'll play pro ball some day and make a lot of money.

If this was back when I was growing up I would think he might have a shot one day to play in the Major Leagues. But these days things are out-of-control crazy and parents start grooming -- which means getting them ready -- their kids for sports when they are super duper young. So I don't know if just being good is good enough any more.

Joe is only 4. Maybe next year he'll want to be an astronaut and not a big leaguer. What would be nice is if he coaches little kids when he grows up. And hopefully the kids he coaches will learn to be good listeners.

Friday, September 15, 2006

We had our 5% day at Whole Foods yesterday.

What an awesome balloon, huh. I like Whole Foods 'cause they give away balloons to kids. I'll shop anywhere that gives away balloons and lollipops. In high school when I worked at Sears at Montgomery Mall I would suck on the helium tank we used for balloons. I'd answer the phones with my voice sounding like the Mayor of Munchkinland. That was a great job.

The 5% fundraiser was a lot of fun for everyone. Jack and Joe ran around the store a lot. They gave out these stickers to all of the people buying food.

They are great salespeople.

The people working at Whole Foods were great, too and a lot of our friends came by and shopped. The money we made goes to Hope for Henry.

Nana and Papa Sy helped out and Pop Pop Teddy and his friend Jeri helped too.

From: Fadia Jawdat (MA GTN)
Sent: Friday, September 15, 2006 1:35 PM
To: Goldberg, Allen
Subject: RE: Thank you!

Mr. Goldberg,

The pleasure was ours. Please see below the content of the email I wrote Laurie this morning.

You and your family were amazing, and yes of course you boosted sales. We were happy to see so many of your friends and family members in the store.

I can only compare to last week’s Thursday sales and in that we saw a 9% increase for the day, even though last week was a little unusual in that it started off with Labor Day Monday. I think the work you all did in putting the word out, the ad, the stickers and above all your presence was outstanding. It felt like one big party and we were so thrilled we could present you with that opportunity.

I will strongly recommend you try our Rockville or Kentlands stores for next year for their consideration.

We love Katie and Mamadou too. I will forward your appreciations.

Warm regards from us all at WFM GTN.



Thank you all for being such an amazing presence and bringing in so many wonderful people.

It was a joy to host Hope for Henry Foundation. You will be receiving a check for $4,557.40.

Please email or call me with your FED ID # so I can put the check request through immediately.Also let me know if we should have a photo op with us presenting the check.

As for the real thing, would you like to pick it up at the store or would you like my regional office to mail it out.
Awaiting your reply.”

Fadia Jawdat
Marketing Specialist/Community Liaison
Whole Foods Market Georgetown
2323 Wisconsin Avenue NW
Washington, DC 20007
202-338-3829 direct line


Monday, September 11, 2006

Real 'fighter,' 14, to throw first pitchTuesday at Dolphin Stadium a remarkable young girl will be throwing the first pitch of the Marlins-Mets game.

Special to The Miami Herald

The Miami area is turning out to be good for a New York girl who has spent much of 14 years battling myriad medical problems.

Brandi Lee Larkins and her family in Buffalo, N.Y., started getting very sick at age 6 and doctors eventually diagnosed her with a rare genetic condition that can often lead to leukemia and other illnesses.

Relatives and friends organized a car wash to raise funds for her in 2002, taking in $2,000.

Now, Brandi will take the spotlight at another fundraiser, this time to throw the first pitch in Tuesday night's game between the Florida Marlins and the New York Mets at Dolphin Stadium in Miami Gardens.

''I am happy and nervous,'' Brandi said as she got ready to practice her throw with neighbors Angelo Salemi, 13, and his brother Baily, 10.

Brandi and her family will be traveling to Miami for the game, courtesy of the Donald Slayton Foundation.

After Brandi started getting sick 8 years ago, her family thought it was just a case of the flu until she coughed up blood and had a nose bleed. She was taken to the hospital and doctors found she suffered from Myelodysplastic Syndrome -- an inability to produce blood cells.

The condition is caused by Fanconi Anemia, a rare inherited bone-marrow failure syndrome that affects both children and adults. The disease may progress and convert into leukemia, said Brandi's mother, Jeannine Holas, who said she was shaken when she first learned about her daughter's diagnosis.

'At first, I thought, `Oh, it's just anemia,' then my stomach dropped down and my knees buckled when I heard 'leukemia' and all the possible complications,'' she said.

As a result of Brandi's illness, in 1998, the entire family -- Brandi's mother, her stepfather Roger Holas and her siblings Chad, then 3, and Kimberly, then 2, moved from Hudson to Buffalo so she could get medical attention from one of only five Fanconi specialists in the world.

The family expanded in 2004 with the arrival of Angelina Marie.

In New York, Brandi underwent two bone marrow transplants in 2002. The procedures took care of her blood cell problems but she remained at risk of developing other serious health problems, Jeannine Holas said.

Then, over the past three years, Brandi developed cataracts and became legally blind. Earlier this year, she underwent two operations to restore her vision.

''I see very good now,'' she said recently after her second eye surgery.

Brandi has lost her hair, has lost weight and has missed two years of school. But she has never lost her spirit, her mother said.

''Amazingly, she has been a real trooper through it all,'' Jeannine Holas said.

Brandi's treatment has cost about $5 million so far, Holas said, and keeping the family going while dealing with Brandi's medical issues has been very difficult.

''The financial difficulties have been tremendous. The stress affects our family relations and even our health,'' Holas said.

During the family's most difficult moments, the support of relatives, friends and the Donald Slayton Foundation has been crucial for them, Jeannine Holas said.

''It has been such an uphill struggle that, without their help, we would not have made it,'' she said. ``You just can't do this alone.''

That helping hand reached all the way to New York from Miami Shores in 2002 when friends and family who live in the village raised nearly $2,000. The Miami Shores Community Church helped Carol Gordon and Linda Adams, Brandi's aunts, whose son Matthew attended the church's school, organize a car wash to raise money for the family.

The Donald Slayton Foundation, which is dedicated to providing financial help to children with life-threatening illnesses and their families, has also been playing a big role assisting the Holases by organizing fundraisers for the past five years. This summer, the foundation donated a car to the family, said Phil Hartley, the foundation's president.

''Knowing Brandi has been one of the greatest experiences of my life. She is something special, she is a fighter,'' Hartley said.