It’s been almost four weeks since little Emma Routh received a life-saving bone marrow transplant.

On Monday, the 5-year-old was getting ready to leave the hospital for her first four-hour trip outside the hospital room in Boston she’s called home since early January.

“Emma’s doing really good,” her mother, Brandy Routh, said via telephone interview Monday afternoon. “She’s doing fabulous. She’s like where a normal post-transplant patient is on day 70, and it’s not even been a full month since her transplant.”

Brandy planned to take her little girl to the apartment at the Ronald McDonald House in Boston that she has been staying in.

“She has a chest with games, books and puzzles that people have sent her at the apartment,” Brandy said. “Hopefully we’ll just chill out and play some games.”

The family currently is waiting on an insurance matter to be cleared up so that Emma can leave the hospital soon and stay with her mother at the apartment and simply go to “clinic” twice a week at the Dana Farber Cancer Institute, which partners with Children’s Hospital in Boston.

“Our insurance has not approved the post-transplant Dana Farber visits,” Brandy explained. “She has been approved for four-hour day trips outside the hospital, starting today.

“Hopefully the insurance matter will be cleared up in the next couple of days, if not they will have to fast-track Emma to Dallas.”

Brandy said her little girl is back up to almost 30 pounds. When Emma  checked in at Children’s Hospital on Jan. 4, she weighed 22.5 pounds. After undergoing days of extensive chemotherapy treatments prior to her bone marrow transplant, Emma’s weight dropped even lower.

“She’s eating and drinking now,” Brandy said. “She’s just doing really well. Her spirits are really good.” 

Monday afternoon Emma was enjoying a meal of fish nuggets, fries and a caffeine free Pepsi, according to Brandy.

As mother and daughter planned for a few hours together, away from the hospital, Brandy’s mother was busy looking for a place for the family to live when Emma returns to Texas.

Prior to the transplant, Brandy and her three children were staying with her father in Montalba but will need a place of their own once they return to East Texas.

“I have to get my own place because Emma will need her own room,” Brandy explained. “We will need to have a home inspection. They will check to make sure there’s no mold and check the paint to make sure it’s a healthy environment for Emma.”

In addition to finding a place to live, the family will have to purchase an air sanitizing system for Emma. There also will be costly prescriptions and many trips to doctors in Dallas and physical therapy in Tyler.

Emma’s after care also will include a special, low bacteria diet and limited  contact with people. Her home health care nurse will be the only person outside family members who will have contact with Emma.

“After her birthday (Feb. 3) she lost all her hair and her skin is really fragile,” Brandy said. “She will need lots of UV protection and UV protection clothes.”

A company that makes UV protection clothes has donated a couple of sets of clothing for Emma. She’ll need more UV protection clothing, Brandy noted, adding that Emma goes through five changes of clothes a day due to nausea caused by the medications she takes.

On Feb. 12, Emma’s brothers -- 8-year-old David and 2-year-old Dalton -- arrived in Boston for a weeklong visit with their sister. It was the first time they had seen one another in almost two months.

“They had a good time visiting,” Brandy said about her children.

Monday’s short trip away from the hospital will give Emma’s doctors a better idea of how well she is doing.

“They’ll have a more accurate read of how she’s gonna do,” Brandy said.

Emma was diagnosed with Fanconi Anemia in June 2008. The rare blood disorder is an inherited anemia that leads to bone marrow failure by causing her blood cells to make improper cells. Though primarily a blood disease, FA can affect all systems in the body and lead to other types of cancers.

Doctors had cautioned the family that the longer Emma went without a transplant the higher the chances were that she would develop leukemia or another type of cancer. Emma beat those odds when a pre-transplant procedure discovered she was cancer free.

For the next five years, Emma will go back and fourth to Boston to get check ups. At first she’ll go every three months, then once every six months and eventually once a year.

Patients who have had a successful bone marrow transplant and, thus, are cured of the blood problem associated with FA still must have regular examinations to watch for signs of cancer.

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 Those who would like to send Emma a get well card can send them to P.O. Box 1260, Palestine, Texas 75802 or Emma Routh C/O Ronald McDonald House, 229 Kent St., Brookline, Mass. 02446.

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Donations for Emma Routh and her family can be sent to the Emma Routh Benefit Fund, C/O First State Bank, 2745 S. Loop 256, Palestine, Texas 75801. Accounts also have been set up at the First State Bank in Noonday and Frankston.

 

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