Sunday, August 31, 2008


Hope for Henry took a bunch of patients and their families from Georgetown Hospital to the Nationals game today. The Nats won!

On the bus over there we watched one of your favorite movies (it was your DVD, in fact), The Sandlot.

I forgot that they have a few bad words in the movie. I cringed when they said them but none of the parents came up to my seat to complain. Maybe they have the same way of thinking as I did when I used to let you watch HBO.

There is a line in the movie that Babe Ruth says to Benny, which stuck in my mind,

"Heroes get remembered, legends never die."

















Check out the fireworks. 

Thursday, August 21, 2008




Marrow drive, fund-raiser to benefit 3-year-old

By MARY RAINWATER

The Palestine Herald


PALESTINE A bone marrow donation and fund-raiser event for Palestine 3-year-old Emma Routh will take place from noon to 6 p.m. Saturday at Dogwood Hills Baptist Church in Palestine.

The event will offer Palestine area residents the chance to donate bone marrow tissue samples in hopes of finding a match for Emma, who was diagnosed June 23 with Fanconi Anemia, a rare blood disorder that causes bone marrow to stop making enough new blood cells for the body to work normally.

“The only thing that can save Emma’s life is a bone marrow transplant,” Emma’s mother Brandy Routh said in a previous interview.

FA, if left untreated, has a life expectancy of anywhere from 18 to 26 years. But Emma only has another 12 to 18 months to receive a bone marrow transplant before her condition likely turns to leukemia.

“A bone marrow transplant takes healthy bone marrow cells from a donor and uses them to replace the abnormal cells in bone marrow,” Routh said. “A successful transplant would make enough new blood cells to work normally.”

Saturday’s event also serves as a fund-raiser to cover the costs of bone marrow tissue typing, which costs about $52 for Caucasians (minorities are exempt from the fees).

“Carter Blood Care will be (at the site) doing the donations and can take from 250 to 300 donors,” Routh said. “There will also be a silent auction, hamburger dinner, a bake sale and massages — all to raise funds to cover costs of tissue typing.”

According to the National Bone Marrow Program, the donation process, while involved, is relatively painless.

“There are two types of bone marrow donation — as a surgical procedure under general anesthesia or by a blood cord donation,” Routh said previously.

Once a donation is made, a typical person’s bone marrow is reproduced within 24 to 48 hours.

“For Emma we are looking for a female donor, brunette or blonde haired and brown- or blue-eyed — blood type really doesn’t matter,” Routh said. “Anyone who wants to donate should feel free to do so, though.

“You never know who will be a good match.”

A fund for Emma has been set up at First State Bank in Noonday, Palestine, and Frankston. For more information about the bone marrow drive or to donate bone marrow e-mail Brandy Routh at marrow4emma@aol.com or call 903-549-3125.

————

Mary Rainwater may be reached via e-mail at mrainwater@palestineherald.com

————

On the Net:

National Heart, Lung and Blood Institute, http://www.nhlbi.nih.gov/health/dci/Diseases/fanconi/fanconi_whatis.html

National Bone Marrow Program, http://www.marrow.org/





video

Sunday, August 03, 2008


It was gorgeous today, so Mom suggested we go to Sugarloaf Mountain. We did some hiking and climbing on boulders.

As we turned onto Sugarloaf Mountain Road, we passed by the little country store where I once carried you in to buy pumpkins. I don't know if you were really sick or if you just didn't have the right shoes (maybe there was snow on the ground).

As of a few weeks ago, Joe officially became too heavy for me to carry. I think he fell asleep on the couch watching a baseball game, what else, and I had to do the "transfer." The transfer is what Mom and I have always called successfully getting you into your beds -- from the car, the couch, the wherever you may have fallen asleep -- without waking you up.

I did get Joe into his bed, but the next morning when I woke up I couldn't move. My back had tightened up and it hurt to do anything other than lay on our bed. That was kinda uncomfortable too.

Whenever we pass that store near Sugarloaf, Mom says,"Hey, that's where we bought pumpkins." And whenever we pass that store, I think "that's where I carried Henry."



When we got home, Joe made his usual pitch to go out and play baseball at Stoddert. As we were leaving the field a mouse skittered right past me. I ran after it and caught him in my mitt. Very cute little guy. Joe was freaked out.

Right now I am sitting with Jack watching the Redskins play a preseason game at Canton, Ohio. Your Tootsie Roll-fueled cornerback, Darrell Green, was inducted into the Pro Football Hall of Fame in Canton yesterday.

Yeah, the 'Skins won. This goes into the books as a pretty perfect day.

Love you.



August 2, 2008

Road to recovery

By KRISTIN DANLEY-GREINER
Herald-Index Staff Writer

With a stranger's blood now pumping through her body, Maddie Landwehr of Altoona - who had been living a nightmare every day - is now making strides toward returning to the vibrant, spunky Maddie that people know and love.

After an uplifting trip to Disney World in Florida this spring that was granted by the Make A Wish Foundation, Maddie returned home to prepare herself for the special bone marrow transplant designed to cure her of a rare genetic blood disorder she was born with called Fanconi anemia. The disease causes bone marrow failure.

"Words cannot describe how wonderful that trip was for Maddie," said Ernie Landwehr, Maddie's dad. "She got to wear a special badge and when her group walked up to a ride, they put her right on it. But she ran out of gas about five hours into it and had to quit and go home. The place where we stayed, you can't even imagine it. It's a 70-acre complex with over 100 villas, merry-go-rounds, clowns; it's a whole park. Maddie said she just wanted to stay there."

Her medical treatments began May 28 at the Fairview Children's Hospital in Minnesota. The chemotherapy took a toll on her small body, but when she received her new blood through an IV drip bag, the transplant only took one hour and five minutes. Maddie's mom, Nancy, has spent more than three months at Maddie's side.

"Maddie's had some real ups and downs," Ernie said. "She's as bald as could be now and ended up with extensive mouth sores after the treatment - she couldn't eat or talk for 20 or so days. She just wasn't our Maddie."

In fact, Maddie became so unlike herself that her doctors worried she had lapsed into depression and were going to call in a psychiatrist. Maddie also contracted graft versus host disease, which is when her body didn't accept all of the blood at first, but now she's 100 percent grafted, Ernie said, meaning her body is full of donor blood and now RH+.

Unfortunately, she's been on steroids to help fight whatever sparked the infection. Maddie has been taking more than a dozen pills daily, including a water retention medication to combat the steroids' side effects, plus blood pressure medication. She also has suffered from a bladder infection, underwent a colonoscopy and has battled serious blood sugar level fluctuations mimicking diabetes, as well as fevers and hives, a combination of which landed her back in the hospital after she first was discharged to stay at the Ronald McDonald House.

"The downside to the steroids is what they do to her stomach and face - she doesn't look the same," Ernie said.

Then Maddie's hip broke through her skin, Ernie said.

"She's retaining so much water that when she sat down, it burst out of her skin," he said. "It came open about half an inch to begin with and now it's a big open sore and not until her body heals will it heal up."

Fortunately for Maddie, her family has been able to visit her in the hospital and where she's staying now at the Ronald McDonald House, except when Nancy and Ernie's adult daughter Melissa's own daughter had her measles, mumps and rubella shots for kindergarten this summer. Because of Maddie's new and weakened immune system, she cannot be around anyone who has recently received live immunizations and should avoid large crowds of people.

Even when Maddie leaves her germ-free apartment at the Ronald McDonald House where only her parents are allowed to be, she must wear a surgical mask to keep germs at bay. Due to the high risk of infection Maddie faces, her physicians do not believe she will be able to return to school until late January or early February, even if everything proceeds as planned.

She also must remain at the hospital for at least 100 days, doctors say, and is just past the halfway point. She isn't allowed to be more than 30 minutes away from the hospital, because she's at risk of going into cardiac arrest. It can get quite boring recovering in the hospital, but friends, family and even strangers have sent Maddie care packages, cards, well wishes and e-mails to her Web site at
www.carepages.com.

"Even the mayor of Altoona and his wife sent Maddie a care package," Ernie said. "She's very appreciative of what everyone's done for her."

Anyone wanting to send Maddie well wishes electronically can log on to her Web page at
www.carepages.com. If you are not a user, you must establish an account first. Then search for her page under MadisonLandwehr. Also, Ernie and Nancy's adult daughter, Melissa Thomas, would like to organize a walkathon for Maddie. Anyone interested can contact her at jmjcthomas@hotmail.com.






Sun, Aug 03 2008

Mother Searching for Cure to Help Toddler


By MARY RAINWATER
The Palestine Herald

PALESTINE — In most respects, Emma Routh is a typical 3-year-old. She loves to play with baby dolls and Playdough, and dance and sing to songs by her favorite singer, Taylor Swift.

But at only 18 pounds and 2-foot tall, Emma is anything but typical.

On June 23, a local pediatrician diagnosed the toddler as having a condition called Fanconi Anemia, a rare blood disorder that causes bone marrow to stop making enough new blood cells for the body to work normally.

The condition leads to bone marrow failure and also can cause bone marrow to make many abnormal blood cells, which can lead to serious health problems like cancer.

“I was at the doctor with my 8-month-old son, who had tonsillitis,” Emma’s mother Brandy Routh said in a recent interview. “I looked at the growth chart and noticed Emma was very small for her age, as if she had stopped growing.

“The doctor and I talked about it and she wanted to run some tests on Emma,” she said. “I got the news on June 23 that she had Fanconi Anemia.”

When Routh found out about her daughter’s condition, she knew immediately what she had to do — drop everything and work to save her daughter’s life.

“The only thing that can save her life is a bone marrow transplant,” Routh said. “I didn’t even talk to my husband before I dropped out of college and began working to find a cure for my daughter.

“I knew every second I could spend with her would be precious,” she added. “And I wanted to find a way to help her.”

FA, if left untreated, has a life expectancy of anywhere from 18 to 26 years. But Emma only has another 12 to 18 months to receive a bone marrow transplant before her condition likely turns to leukemia.

“A bone marrow transplant takes healthy bone marrow cells from a donor and uses them to replace the abnormal cells in bone marrow,” Routh said. “A successful transplant would make enough new blood cells to work normally.”

Routh’s efforts to gather bone marrow donors has been fairly successful of late. Working with the Because I Care organization and the National Bone Marrow Program, she has been able to schedule two bone marrow drives in East Texas.

The first one, which takes place Aug. 16 in Tyler, is already maxed out with its 400-donor quota. A second drive, considered a kick-off event, is taking place from noon to 6 p.m. Aug. 23 at Dogwood Hills Baptist Church in Palestine, the Rouths’ home church.

“Carter Blood Care will be there doing the donations and can take from 250 to 300 donors,” Routh said. “There will also be a silent auction, hamburger dinner, a bake sale and massages — all to raise funds to cover costs of tissue typing.”

According to the National Bone Marrow Program, tissue typing costs about $52 per person, with minority donors being exempt from the fees. The donation process, while involved, is relatively painless.

“There are two types of bone marrow donation — as a surgical procedure under general anesthesia or by a blood donation,” Routh said. “Emma had a bone marrow biopsy done and was up and running within an hour.”

Once a donation is made, a typical person’s bone marrow is reproduced within 24 to 48 hours.

“For Emma we are looking for a female donor, brunette or blonde haired and brown- or blue-eyed — blood type really doesn’t matter,” Routh said. “Anyone who wants to donate should feel free to do so, though.

“You never know who will be a good match.”

A fund for Emma has been set up at First State Bank in Noonday, Palestine, and Frankston. For more information about the bone marrow drive or to donate bone marrow e-mail Brandy Routh at marrow4emma@aol.com or call 903-549-3125.

————

Mary Rainwater may be reached via e-mail at mrainwater@palestineherald.com