Monday, November 26, 2007

A 10-year-old boy's Christmas wish: 'I just want to live'

Sunday, November 25, 2007



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

Rare disease has their 'world spinning'
Saturday, November 24, 2007


Times Staff Writer

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


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."

Inseparable pair

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

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?

Saturday, November 17, 2007

We went to see the Springsteen concert. I wasn't really blown away, but what made the evening for me was watching Jack and Michael experience the show. They had a good time but got tired.

We fed them plenty of Coca Colas but it still got pretty late for them on a school night.

Mom and Aunt Abby and Uncle Andy loved the concert. I don't think I will see Bruce Springsteen again. I have great memories from the 1970s and the 80s and I want to remember him that way.

Henry, I talk to you a lot about heroes. You are one. Amy Frohnmayer is one. Her mom, Lynn, and her dad, Dave, are heroes too.

This is a letter Amy wrote for her parents to send to their friends.

“Do what you can, where you are, with what you have.”
­ Theodore Roosevelt

Dear friends,

Last year, my mother sent me the simple quotation above. It¹s taped onto the wall opposite my bed and I read it every day. Mom sent this at a time when I was having trouble concentrating due to a drop in my red blood count. I had never before felt quite so fragile, maybe even a little defeated by Fanconi anemia (FA). I spent hours on homework that previously had taken little time to finish, and I couldn¹t escape on long runs because I didn¹t have the energy. That period of time last winter reinforced a sense of uncertainty that FA instilled in me from a young age.

I have always known that I have FA and from early on, I experienced heartbreaking losses that never let me forget the destructive power of this illness. I was four when my sister Katie died, and eleven when I lost my sister Kirsten. Over the years I have also lost many close friends to FA whom I met at our summer family meetings and grew to care about deeply.

Long ago, I assumed I would need a bone marrow transplant while I was still young, because I would be strong and my chances of making it through that strenuous procedure would be better. The decision to have a transplant, however, should be based on a severe deterioration in my health. I always thought this would happen soon, but I remained healthy. Although I have been incredibly lucky, I have never known when my health would take a serious turn and I would need to go to transplant. As I grew older, I feared more and more this sudden and inevitable interruption and I felt powerless to predict it.

As frightening as all of this has been to me, I am well aware of the enormous progress that has taken place in Fanconi anemia research. For these advances, I feel deeply grateful to the Fanconi Anemia Research Fund, which has supported the work of experts around the world. I am especially thankful for the wonderful donors who have made this possible.

Whenever I am able, I attend research presentations at family meetings and speak directly with bone marrow transplant experts. The consistent and rapid advances in this field are incredibly exciting and merely thinking about this progress gives me hope. Just last August, I learned that twelve out of thirteen FA patients are now surviving a new bone marrow transplant protocol for those with unrelated and mismatched donors. I learned about the potential of treating patients with healthy adult stem cells. Doctors spoke about new methods for detecting pre-cancerous cells in patients, so that cancer can be identified and treated very early. Doctors are concentrating on all facets of this complex and devastating disease, working to make long and full lives a reality for all of us who share it.

FA has been the source of tremendous pain, but has also been a surprisingly strong positive in my life. It has shaped my personality, goals and interests, and forced me to grow in important ways. FA is imprinted in all of my activities, from being a grief counselor for children and an intern with a children¹s hospital, to writing articles about the psychosocial aspects of living with a genetic illness, and to my long-term goal to become a genetic counselor.

To live with FA is to learn to value life in a different way. FA reminds me to try to appreciate every minute of the day, to treasure my close friends and family, and to immerse myself in the college learning experience.

Now, as I begin my junior year in college, I want to do all that I can to find a cure for this disease. Since last spring, my health has improved, and I have the energy to help make this dream a reality. I¹m writing to ask for your help by donating to the Fanconi Anemia Research Fund. And I am writing now because there might be a time when I can¹t, and because at this moment, it is something I can do with all the passion I have.

Thank you so much for your support. It honestly means the world to me.

Amy Frohnmayer

Saturday, November 10, 2007

This is Joe's last game last week. He is still an unbelievable baseball player. His coach for the past few seasons, a super guy named Seth, said incredibly nice things about him - that even though Joe is the youngest on the team, he is the best hitter, fielder and all that. Believe me, it all goes straight to your little brother's head.

I signed Joe up for Winter Baseball at University of Maryland. Scouts, baby.

This will be the last baseball pictures for a while or until University of Maryland.

There is a kid in Joe's class, Aden, who wants him to play football on his team. We missed this year but will play next autumn. That will be fun.

Nana is turning 70 in January. Mom is scanning in some pictures getting ready for the party. I was blown away by this one.

Yes, that is Jackie Robinson. Nana is sitting right next to Jackie's wife. I can't believe Nana never showed us this before.

This is another picture that Mom scanned. Do you recognize Papa Sy smack dab in the middle of the upper row. Such a cool, old school looking team photo.

Here is Jack's from this year. Looks a lot different from Papa Sy's. Jack provided some SportsCenter highlights at his last game. With bases loaded, playing shortstop, he caught a high pop up to get the second to last out in the last inning of the last game of the season. His team, the Rockies, held on to win 14-12 in a really exciting game.

A little while ago, Jack had a conversation with Mom where he was wondering which was worse:

• Having a parent die
• Watching a parent die
• Having a sibling die
• Watching a sibling die

Mom figured out from this that Jack doesn’t remember being in the room when you died. He doesn’t remember everyone being there, me taking out your feeding tube and putting you on Mom’s lap as she rocked you. I remember all of that. Really well. I also remember watching you – zipped up in a bag – get wheeled down the hallway to wherever it is they store dead bodies.

That was 5 years ago. In December it will be five years since I held you. Five years since I kissed you, heard you laugh, cared about Pikachu, Ash, that sort of stuff.

If this was Mom writing she'd say "Five years since I have known real perfection."

Here are some photos that I haven't put up yet. First is Joe's birthday and then Halloween.

Of course Joe's birthday was baseball. We went to this indoor place in Gaithersburg. Joe invited all the cousins and a lot of older kids.

We went to Aunt Abby's and Uncle Andy's again for Halloween. Mom is bummed that we aren't around to give out candy. We only trick or treat. This is definitely one of those times when you need to be in two places at once.

Your cousin Rachel made her "Pebbles Flintstone" costume and little Noah's clown suit. She is amazingly talented. She can paint, design, sew, cook, you name it. She will grow up to be whatever she wants to be. She could be the Jewish Martha Stewart, but I have a sense she'll be something spectacular. Because you two were born only 3 days apart I always think of you as having a special bond - it isn't anything on the surface. I think it will come out more later.

Joe wasn't much of a stretch. Jack was the Red Sox.

Friday, November 09, 2007

Mom and I went to a movie last night. It was called, Travels with My Dad. It isn't totally finished yet or paid for, so the woman who made the movie, Jessica Gerstle, had some people watch it to make suggestions about how it might be better and how she might be able to raise money to pay for it.

The movie is about Jessica's dad, Claude. He had an accident when riding his bike and now he cannot walk or move his arms. A lot of times I wondered what life would have been like if you lived but couldn't walk or do a lot of things. This movie shows how hard life is for someone who cannot move.

Jessica and her dad are both amazing people. I am sure Jessica is proud of her dad. He is a warrior. Her dad has to be incredibly proud and thankful for a daughter like her. They are truly a beautiful family and the movie made me cry -- a lot.

Jessica wants the movie to help people understand why stem cell research is important. Some day, if they can get it to work, these cells may help people who can't walk and help people with all other sorts of problems.

You had a stem cell transplant to get your new blood. And we donated all of the embryos we created that didn't work to doctors to figure out a way not to need so many embryos to save kids like you. Those embryos have really special stem cells.

A lot of people have different ways of thinking about these special cells. It is really hard to make sure everyone is okay with what the doctors and the families want to do. We all just need to keep talking to each other, and to watch movies like the one Jessica is making so we understand how people can be helped.

Mom talked to people at Uncle Andrew's synagogue a week or two ago about all of this stuff. Here are some slides she showed.

I hadn't seen that picture of you from your heart surgery in a long time. That was pretty harsh. I just went and looked at your old website for the first time. We never updated it to say you died.

Wednesday, November 07, 2007

Hen, this is something I started writing a while ago.

I am writing to you high above the earth. I am on an airplane flying to Los Angeles. We are flying straight into the “season of sadness” which is October (your birthday) to December (your deathday). This is the time of year where feelings about you are intensified – which means in this case, they get stronger. Just the other day I was on the bus on my way home and I started to cry.

Here is what happened… I was listening to Bruce Springsteen and thinking about how Jack is going to go to his first rock concert. If you haven’t guessed, I am very excited for him. I quickly switched to thinking how this would have been your first real concert too. You went to see Lucinda Williams once, but you were in a car seat so that doesn’t really count.

In Mom’s eulogy she said you were the encore of a Springsteen show.

Then I clicked around on the iPod to find this band I like called Marah. Mom and I went to see them the other night in Virginia. I have a short attention span and switch between songs the way I switch channels on TV. They have a song called Crying on an Airplane. That made me think about all of the times that I have been on an airplane and started thinking about you and ended up crying. I don’t know if it is looking at the clouds or feeling just very alone, but I have these “Henry Moments” where I feel close to you and very sad at the same time.

Mom told me how she ended up crying the other day. I think she described to me the “progression.” Here is how it went. We were having everyone over for to eat on Sunday morning, more on that later, and Mom was thinking what to make. She thought about something that Beth (Oh Dear) cooks for brunches and that made her think about how you used to call her “Bethie.” That’s all it took.

A few days ago, opening up the computer made me sad. I looked at the photo on my desktop of Mom, Jack, Joe and me at the National’s game when the computer screen warmed up. We all look so happy and we are. But you are so missing.

Then the other night at dinner. It wasn’t that we were all so happy. It was just that you and your personality were missing. We were all sitting around the table and talking and I felt that you were not there. You were the perfect fit between Jack and Joe. You would’ve kept the peace. It’s like a three-legged dog. He gets around okay but you're very aware that something is missing.

And then there was last weekend. I did that 100 mile bike ride I have done the past couple of years. Steven broke his wrist so he couldn’t make it, but Jake’s dad, Richard came. We drove in the Defender to St. Michaels and met Mom, the guys and Nana and Papa. The weather was fantabulous. Here is a picture Mom took.

Driving around in the Defender without the top on has been a blast. It is not a very sensible car, but it is a very fun car. Thanks to the drought -- which means it isn't raining -- and how warm it has stayed, we have been able to drive around “topless” for a long time now. Mom and Jack and Joe love it, and that makes me very happy. Jack wants us to get a license plate that says, "Ha Beast," which would be Hebrew for "The Beast." I may do that.

There are no airbags so Jack and Joe are okay to sit in the front seat. I have taught them the whole concept of "Shotgun." If you want to sit in the passenger seat in front you need to call "Shotgun" when you are in sight of the truck. There is a lot of competition for that front seat, but the back is pretty cool. There is a middle seat, but there are also benches on the side and you get to sit facing in.

I bring this up a lot, but I am glad that Mark sat you in the front seat of the car when he took you out for pancakes.

I think I know why Mom is really into the truck. Here is a picture of the jeep that Mom always told us about. The one that they had at their farm in Virginia when she was growing up. It feels like we are repeating history.

And you have to remember this picture. It is in the living room. It is one of my favorites of Mom from growing up. Not sure I ever noticed the jeep behind her.

The next morning Richard and went to Salisbury for the bike ride, and Mom and the guys had a lazy day with Nana and Papa. The weather was beautiful. It has rained terribly the last two years, so this was especially nice.

Richard and I rode faster than I have before. He was great at pushing me. Sometimes you need to get pushed.

After the ride we drove back to Washington because it was Joe’s birthday. It was quite the perfect, busy - usual - weekend.

The more perfect it is the more I think of you. They are twins.

I have more that I have written and I will put that in another post.

I wanted to give you an update on that guy Coby who used to be in Jake's class at JPDS. He has leukemia and is being treated at Children's Hospital. He is going through a very tough time with chemo right now.

Below are entries from his website from a few weeks back. In the picture you can see he is wearing his Hope for Henry baseball cap while talking on his computer with Miley Cyrus. She is a big deal, like Mary Kate and Ashley were back when you were alive. Remember when I went to Mall of America to film them for you. That was cool.

Jack watches Miley Cyrus' show on TV all the time.

10/4/2007 12:15:01 PM (CST)

Jacob's dad here: Jacob is doing better each day as we get farther out from the first round of chemo that ended Friday. He is just visibly better and more energetic, he hasn't had a fever in quite a while, his mouth and throat sores have receded, he got a new shave (head, that is) and a shower, he's wearing his red Sanibel Bennett Reunion shirt (not to be confused with the read "Lameco" - - would I make this up? Who names a company this? - - t-shirt that Uncle Benjamin gave him from the air trade show), and he's eating more every day. This includes the sausage patties that came with the hospital breakfast and that his dad would be scared to eat on a good day. Jacob phone conversation quote of the day: Hey Mom! Guess what? I got an Ipod Touch! (Thanks to the Hope for Henry Foundation, And I'm sitting here watching a movie on DVD that is still only out in theaters. Life is good.

10/6/2007 8:35:01 PM (CST)

Jacob's dad here again. Yesterday (Friday) was a big day. First, Miss Virginia dropped by, in full tiara, and chatted with Jacob and signed a picture for him. Of course, when the nurse asked if we wanted to see Miss Virginia, we asked "Miss Virginia who? Is that the physical therapist?," not knowing it was THE Miss Virginia. Then Jacob got a televideo call from Miley Cyrus, aka Hannah Montana! Rachel's cousin, Steve Elster, and his mother Linda, both of whom teach child actors in Hollywood, arranged the call (thanks to you both, and to Miley!). Miley spoke with both Jacob and his sister Sophie, who is a huge fan. Miley was very gracious, energetic, and quick to laugh, just as she is in her TV show. She talked about her show and her upcoming concert tour (tidbit for the parents: those were Larry David's real daughters in his cameo appearance on the show). Sophie, despite having a cold, managed to sing the "Best of Both Worlds" theme song to Miley's TV show. We captured the whole thing on digital video tape, but lack the technical skills to post it, so you (or your kids) will just have to ask to see the tape next time you visit our house. By then, Sophie will probably have memorized all of Miley's/Hannah's songs to sing for you. Meanwhile, Jacob continues to gain in energy and appetite every day, and we're watching his daily blood counts to see when he will be ready to come home to rest up for the next round of chemotherapy.

Your brother in his spiky-haired glory. Joe loves to make mohawks. He also loves to sing.

We took this picture and then emailed it to Mom who was in New York for work.

He is a funny kid. You might find him to be annoying a lot of the time like Jack does, but you'd like him a lot.

Wouldn't you know... here is Dr. Wagner one last time. This time it is a story about a FA family. The little girl Elizabeth is alive because her brother Michael was a perfect match.

See, it works.

This is a really nice story.


I wrote a "comment" on the video's webpage. I said it was good to tell these stories so everyone understands what is happening. Some people don't think this is such a good idea. I don't think anyone will change their minds, but for everyone else it is good to know the facts.

Mom said she spoke to a woman who is writing a book about all of the brothers and sisters who have saved their brothers or sisters through this type of procedure. That means it must be working a lot.