Dear Henry

Girl, 3, Needs Transplant to Fight Disease that Keeps Her Body from Making Blood

Staff photo by Tom Turner

Emma Routh plays at Frankston Park in Frankston on Friday. Emma has a genetic disease called Fanconi Anemia which can result in skeletal anomalies, leukemias and bone marrow failure.

By MALENA OGLES
Staff Writer

PALESTINE — By personality, 3-year-old Emma Routh is a lot like other little girls. She likes play dough, Dora the Explorer, snow and dancing every time her favorite singer, Taylor Swift appears on TV. But her mother knows that Emma, who weighs 10 pounds less than her 8-month-old brother, may never have the chance to grow up like other little girls.

On June 23, Emma was diagnosed with Fanconi Anemia, a genetic disease that shuts down her body’s ability to produce blood.

Emma’s only chance for a cure is a bone marrow transplant.

Now, weighing 18 pounds, Emma is unable to play outside with her two brothers, go to school or attend her gymnastics classes.

Because of her low blood count, doctors worry her body would be unable to heal itself if she fell or came in contact with germs.

If the transplant is not done within the next year, Emma faces the possibility of leukemia, organ damage and a shortened life expectancy.

“I don’t want to think about the ‘what if’ — I would go crazy. I can’t even stay not doing anything for 33 minutes,” her mother Brandy Routh said.

Mrs. Routh, a full-time student, withdrew from her classes to work full time on the search for her daughter’s donor.

“No one in the family is a match and we haven’t found a match of the national registry,” she said.

While her mother spends hours on the phone with media, bone marrow groups and collection centers, little Emma sleeps. She sleeps between 14 to 16 hours a day — tired from a lack of blood.

Emma was born two and a half months premature, so her small stature was no surprise to her parents, but eventually when she stopped getting bigger they knew something was wrong.

“I looked at the growth chart at her doctor’s office and it looked like it just stopped growing,” Mrs. Routh said.

Further tests revealed Fanconi Anemia.

Other than not physically growing, the 3-year-old has developed fine.

“She tests above average, and is mature for her age. She walks and talks normally,” her mother said.

Because of Emma’s level of awareness, her mother is challenged with finding a way to explain to her daughter why she is sick.

“One of the first things they told us was that she couldn’t go to school because of the germs,” Mrs. Routh said.

That conversation was one of several Emma overheard and became upset with.

After her diagnosis Emma was shown a video at the hospital that used Cabbage Patch Kids to explain the danger of germs and what happens during chemotherapy.

“I know it was made for a 2- to 6-year-old, but as an adult it scared me,” Mrs. Routh said. “She’s completely freaked out and hits people if they touch her because of the germs.”

For the Rouths, the past month has been a crash course in bone marrow transplants.

“We knew nothing about this until three weeks ago,” she said.

What the family has learned is that a bone marrow transplant will help Emma begin producing blood and that the more people there are on the registry the greater her chances are of finding a match.

Currently, more than 1,400 patients receive transplants through the National Marrow Donor Program (NMDP) each year. Mrs. Routh’s plan is to increase her daughter’s chances for survival by increasing the number of donors in East Texas.

TISSUE TYPING

The Routh family, with the help of Because I Care, a Longview-based tissue-typing recruitment group with the NMDP, has organized a bone marrow drive on Aug. 16 at Green Acres Baptist Church from noon to 4 p.m.

The group also raises funds to defray the cost of tissue typing and plans to pay for up to 400 tests at the drive.

A second marrow drive is set at family’s church, Dogwood Hills Baptist Church in Palestine, on August 23 from noon to 6 p.m. Stewart Regional Blood Center has agreed to tissue type 250 people.

“This isn’t just about my child. It’s about children everywhere. Everybody needs to get out and donate,” she said.

Anita Quinn, donor coordinator of Because I Care understands Mrs. Routh’s desperation to find a donor.

Her son Bryan was diagnosed with acute leukemia in 1998, but at that time there were only 75,000 people on the national registry, compared with the nearly 7 million today.

One week after Bryan graduated high school, he learned he would need a bone marrow transplant. To pay for the cost of tissue typing, his mother and friends organized a walk-a-thon.

Thousands of dollars later, they found a match, a woman who lived in England.

“His donor was a petite woman. How much more different could they be? But she was a perfect match,” she said.

Bryan’s transplant went well, but he died three years later at the age of 22.

Still, Ms. Quinn believes her work has a silver lining. Since the formation of Because I Care, more than 14,000 potential bone marrow donors from East Texas have been placed on the national registry.

“God has blessed our efforts. We do not charge people to be typed,” she said. “Through the registry many recipients have found a donor and are still living. His life made a difference.”

WHO CAN DONATE

Once a person decides to become a donor, they are assigned a number and listed in the national donor registry, a computerized data bank that was established by Congress in 1987.

If they are a match for someone in need of bone marrow, they can be contacted to donate to anyone in United States.

“You may not be a match for Emma, but you could be a match for someone else,” Janie Malone with Stewart Regional Blood Center in Tyler, who is sponsoring the tissue typing in Palestine, said. “They’re not all children who need a transplant. Sometimes they are mothers of children or someone out there with a family.”

During the registry drive, a potential donor’s mouth will be swabbed and the sample will be sent to a laboratory for typing.

It could be years before a person is matched, or they could never be matched, Quinn said.

According to the NMDP, if your tissue type is a match, you will be told the gender, age and disease of the person who will receive your donation.

Quinn said that it is up to the donor to decide if they want to continue with the donation.

Anyone in good physical health between the ages of 18 and 59 can become a donor.

It costs $52 to tissue type a Caucasian, but Quinn explained that there are more federal funding and grants to tissue type minorities.

According to the NMDP, some patients have more difficulty finding a donor than others.

While a match can be anyone, often closer types are found in similar racial or ethnic groups of the patient.

“A Caucasian has an 80 to 85 percent chance of finding a match on the registry; for a minority that percent is much less,” Malone said. “There are just a lot less minorities on the registry.”

Malone added that she has seen an African American match with a Caucasian and vice versa.

“You just never know,” she said.

MARROW MISCONCEPTIONS

Part of the problem Quinn has found while working with bone marrow donors is a misunderstanding of what the donation process is like.

“One thing I hear a lot is a comparison to a marrow biopsy,” she said.

A bone marrow biopsy is done with a local anesthetic while the patient is conscious.

“It’s done when they are awake and can be very painful,” Ms. Quinn said. “That is not what happens in a marrow transplant.”

In most transplant cases, there two different procedures that can be used to donate. The first is a day surgery where doctors make tiny incisions on the donor’s hip bones, insert a needle and extract the marrow.

According to information from the NMDP, while the donation process varies slightly from hospital to hospital, the surgery is usually done with the patient lying on their stomach with three to four incisions less than one-fourth of an inch long are made for the marrow extraction.

The marrow is then removed through a hollow needle.

The surgery, on average, lasts about 45 minutes to an hour, and the patient does not require stitches.

Ms. Malone said that when she donated marrow three years ago she was walking around the next day.

“I didn’t feel it when it happened, but afterwards there was some soreness in my hips — like a bruise after you fall,” she said.

Ms. Malone’s surgery was on a Thursday, and on the next Saturday she said she attended a bluegrass festival.

The second way a donor can be asked to give is through a Peripheral Blood Stem Cell donation. The donor is given a series of injections under the skin that cause the marrow to release more blood-forming cells into the blood stream.

“They are then collected with a machine similar to that used in platelet or plasma” donation, she said.

“These are adult stem cells, harvested from adult. Not the controversial type you hear about.”

Another concern Ms. Malone said she has heard is patients worried donating will compromise their immune system.

The average amount of marrow and blood donated is about one quart and less if the patient is a baby or child.

“This is only a fraction of your total marrow,” Ms. Malone said. “It will replenish.”

A benefit fund for Emma was set up First State Bank in Noonday, Palestine and Frankston. For more information about donating to the Emma’s transplant fund, contact Brandy Routh at marrow4emma@aol.com.