Date: Fri 02-Apr-1999

Publication: Bee

Author: KAAREN

Quick Words:

Thomas-Ward

Full Text:

After A Tough Year, Tom Ward Looks Forward To Recovery

(with photo)

BY KAAREN VALENTA

Thomas Ward didn't know that he had made the middle school honor roll until he

read it in the newspaper. It was a pleasant surprise for the eighth grade

student who has had more than his share of unpleasant surprises during the

past year. One year ago, on March 10, 1998, doctors said a lump on Thomas's

left leg was a cancerous tumor. A year of chemotherapy and six weeks of

radiation followed.

"Thomas went into the hospital last August [for the surgery to remove the

tumor] and what was supposed to be a five-day stay. Instead, he was there for

10 weeks," his mother, Laurie Ward, recalled in an interview in the family's

Sandy Hook home this week.

"Two of the three large veins in his leg were removed in the surgery along

with muscle, the nerve and the femur," Mrs Ward said. "[The surgeons] said

they removed a good margin around the tumor, which was a plus, otherwise they

would have had to amputate."

But in the days following the surgery at Columbia Presbyterian Hospital, a

staph infection developed in the incision, killing much of the surrounding

tissue. Thomas was transported by ambulance five days a week for eight weeks

from Columbia Presbyterian to Englewood Hospital in New Jersey for treatments

in a hyperberic chamber in am attempt to speed the healing. Since then, there

have been repeated hospitalizations as doctors have battled both infection and

the failure of the wound to heal.

Several weeks ago he was in surgery again. A muscle, part of the Achilles

tendon, was removed from the back of the leg and transplanted into the front

to fill the hole left by repeated attempts to remove infected tissue.

"Not all of [the transplanted tissue] was healthy to begin with and it isn't

covering the entire wound," Mrs Ward said. "I change the surgical dressings

twice a day and Tom has to go back to the hospital every Thursday for it to be

checked by the plastic surgeon."

For now, however, Thomas, 13, is home. His hair has begun to grow back. He has

gained weight and at 5'11" is nearly three inches taller than he was when the

ordeal began last year. He is still taking antibiotics and pain killers and

must spend his days with his leg elevated, but his family is beginning to be

cautiously optimistic. This week he was able to sit outside on the deck at

home when his visiting teacher came to tutor him.

"When I go into the hospital, I'm usually ahead in my classes," Thomas said,

"so I've been able to keep up even though I can't go to school."

It isn't likely that Thomas will be able to return to school until next fall

because of the open wound on his leg.

"The plastic surgeon plans to stretch the skin on my leg to try to cover the

incision," Thomas explained. "He will put in stretchers on both sides and

inject saline solution to stretch the skin."

Every three months Thomas has to have a complete battery of tests -- MRI, CAT

scan, bone scan, EKG, X-rays, and others -- to make sure the cancer has not

returned. It will be five years before he is considered cured.

According to the medical diagnosis, Thomas has a very rare type of cancer

known as spindle cell sarcoma, a soft tissue cancer that is a type of

malignant peripheral nerve sheath tumor.

"It's a type of cancer that usually strikes adults rather than children," Mrs

Ward said. "We went to an out-of-network hospital -- Columbia Presbyterian --

because we were referred there. We wanted Thomas to be treated at a hospital

that has treated similar cases."

As Thomas's medical bills approach the $1 million mark, Mrs Ward said her

battles with the family's insurance carrier become more frustrating.

"The hospital bill alone for the 10 weeks he was in the hospital last August,

September and October was $130,000 and a $13,000 surcharge has been tacked on

because the bill hasn't been paid by the insurance company," she said. "The

biopsy that was done last March [1998] hasn't been paid yet. I'm still

fighting with the insurance company over whether the hyperberic treatments are

covered. The oncologist's bill -- $45,000 -- hasn't been paid, but he has

assured me that Thomas will never be denied treatment."

For a long time, when Thomas's condition was critical, Mrs Ward said she did

not even open the bills. Now she is on the telephone with the insurance

company every week.

"You do what you have to do," she said. "I was very scared for the first

couple of months, then I figured out that you have to educate yourself and

speak up. I began to realize that if you want your child to get the help he

needs, you have to step in. In the hospital, I make sure I know everything

that is going on with Thomas and all his doctors. When something is not right

-- and mistakes do happen -- I speak up immediately. When all of this is over,

I want to become a nurse. I took the entrance exam and passed."

During the past year, out-of-pocket expenses for the family have continued to

mount. Tom's mother took a leave of absence from her job at Danbury Hospital,

where she had worked for 17 years in the hospital's coffee shop. Tom's father,

Michael, a school custodian in Trumbull, has to take a day off from work each

time his son goes to the hospital.

"The parking garage isn't adjacent to the hospital," Mrs Ward explained. "I

can't just drop Thomas off in a wheelchair and go park the car. My husband has

to drive us. Everything is so complicated."

Before his illness, Thomas liked to play baseball and football. During the

past year, he has started to learn to play the drums, has become interested in

archery, and wants to learn about photography.

"Thomas can't use his leg on the pedal for the bass drum, but he is practicing

to use the sticks," Mrs Ward said. "The teacher from the music store [in Sandy

Hook Center] volunteered to give him free lessons. It was fantastic. Thomas

had to stop after the surgery, but he eventually wants to start lessons

again."

Thomas took a bow hunting course before the surgery and has been interviewed

for an article that will appear in the April issue of New England Woods and

Water . He also did a radio interview to benefit St Jude's Children's

Hospital.

Because of the constant fear of infection during Tom's months of treatment,

his contact with friends and the outside world has been limited. He has tried

to entertain himself by reading, playing games and watching television. Dorrie

Carolan at Newtown Health & Fitness on Commerce Road is collecting books,

video games and other items for Tom to use during his recuperation. A donation

of a laptop computer would be especially appreciated.

A fund has been set up at Newtown Savings Bank to collect monetary donations

for the Ward family. Donations may be sent to the Thomas Ward Benefit Fund,

c/o Newtown Savings Bank, 39A Main Street, PO Box 497, Newtown 06470. At St

Rose Church, where the Wards are parishioners, the congregation has been

praying for his recovery and providing cooked dinners on many of the days that

the family has to make trips to the hospital.

This month Mrs Ward has to have surgery on her foot, and she faces weeks of

recovery. "I'm supposed to go back to work in May, but I just don't know what

is going to happen now," she said.

"I can't express our gratitude enough for all that everyone has done for us,"

she added. "It is wonderful to know that everyone cares and wants to help."