- The Washington Times - Sunday, August 2, 2009

CITIZEN JOURNALISM:

Paper signs guard the two doors. “ISOLATION,” they warn in bright yellow. “Do not enter this area.” Inside, a boy calls himself “the prisoner” and his mother “the warden.”

The boy must limit his contact with the outside world. In May, doctors eradicated his bone marrow with radiation and chemotherapy before transplanting new marrow into his diseased body. He is on the mend, but his white blood cells have not yet rebuilt their former defense system. A common cold could put him back in the hospital.

This is the story of Alex Ramsey, 16, and the house where he has lived for the past 60 days of isolation.

Alex has severe aplastic anemia - his body started killing its own blood cells. It is a terminal illness. In January, he and his parents found themselves choosing between life spans: Should Alex continually receive blood transfusions and live perhaps another 20 years? Or should he undergo chemotherapy and bone-marrow transplant - fraught with risks - and perhaps live to a ripe old age?

They chose the transplant. However, finding a place to live during the chemotherapy, transplant and subsequent 100 days of isolation proved difficult. It was too long to drive every day to Washington, where their hospital is located, from their home in Hampton, Va. Hotels were expensive, and carpets there could hold thousands of germs lethal to the boy. Then a hospital social worker told them about the Ronald McDonald House, which offers housing at a nominal cost to families in situations similar to Alex‘s.

“The Ronald McDonald House has been the healthiest and safest bet. And the cheapest. The only thing that would have been better is staying in our own house,” says Alex’s mother, Missy Leonard.

So for Alex and his mother, the Ronald McDonald House jokingly became their “prison” but in reality became their sanctuary.

ALEX

In October, Alex scratched his leg on the way home from a Boy Scout meeting - just a small cut that should have scabbed quickly. It didn’t. It kept bleeding and wouldn’t stop. So his parents took him to the emergency room, where they discovered his blood platelets had essentially vanished. The count was 2 - a low normal is 141. After numerous tests, transfusions and a week in the hospital, Alex was diagnosed with severe aplastic anemia.

“I was scared because I had no idea what it meant, no idea what was going to happen. And of course, the typical mom thing: ‘Why? Why my child? Why me?’ ” Ms. Leonard says.

Alex’s disease is what doctors call idiopathic, meaning they do not know how or why he got it. It is not hereditary. It is not necessarily a childhood disease.

Unlike anemia, aplastic anemia causes the body to kill off all blood cells - including white blood cells and platelets - not just red blood cells. This wipes out the immune system.

“In other words, I’m my own worst enemy,” Alex says.

However, rather than continue to live in fear after his diagnosis, Alex’s family chose to remain positive. His father refused to believe his son’s disease would be terminal. His mother remains upbeat and cheerful. Together she and Alex make an effort to have fun and laugh often, nicknaming nurses and bantering with them during hospital visits.

“Vomiting?” asked nurse Bonnie Yates, running through a list of symptoms during a recent checkup at Children’s National Medical Center in Northwest Washington.

Alex pretended not to hear correctly: “Comedy?”

“Vomiting. Comedy I’m well aware of,” she replied with matter-of-fact affection.

Alex’s mother says they try to go through their days tongue in cheek.

“We’ve had a lot of scary moments. But we don’t live on them. We live on the fun times,” Ms. Leonard says.

They also have poured their time into fundraisers for organizations that help children with terminal illnesses.

“Our way of coping with this was raising money and helping somebody else so that they could get healed more quickly,” Ms. Leonard says.

Over the past year, they helped sell aplastic anemia wristbands to raise money for foundations that fight the disease, shaved Alex’s head to raise $1,100 for cancer research and helped recruit more than 200 people to donate platelets to their local hospital during a recent shortage.

Now they want to help the Ronald McDonald House Charities (http://rmhc.org).

THE HOUSE

The little boxes by the cash registers at local McDonald’s restaurants are easy to overlook. However, they help fund housing for the hospital stays of children across the nation, including Alex. The Ronald McDonald House on Quincy Street Northeast has 16 bedrooms, including one bone-marrow transplant isolation suite, where Alex and his mother stay.

The house, just a few minutes’ drive from Children’s National Medical Center, charges a nominal donation - $10 a night - for its services but sometimes waives even that. Brightly colored decor, a game room, toy room, computer room, patio and playground make the time pass faster for families.

But the Quincy Street house was built in 1912, and the cost of maintenance continues to increase. In addition, the house usually operates at full occupancy, with no room left for families, especially long-staying bone-marrow transplant patients - some of whom may be turned away and forced to find more expensive housing.

So the charity plans to build a new house with 26 bedrooms and four isolation suites. Donors already have given $4 million, but about $1.3 million remains to be raised, says Cortney Kelly, manager of the D.C. house.

Lynn Hardesty, a social worker at Children’s National Medical Center, says the need for the new housing is acute.

“We have a growing number in our transplant population. People are coming from all over the area, from farther and farther away,” she says, adding that if families cannot get into the Ronald McDonald House, they have to choose between hotels or apartments.

“There is no other low-cost option,” she says.

Alex and his mother hope to help with fundraising for the new house. In addition, to celebrate the halfway mark of Alex’s isolation period this month, they started gathering friends’ donations of items on the Quincy Street house’s “Big Ticket Wish List,” including a crib, a highchair and a DVD/VCR player.

“Laughter was the best medicine for us. And helping others,” Alex’s mother says.

LOAD COMMENTS ()

 

Click to Read More

Click to Hide