Fighting the odds

Deirdre Newman

Carol Dugan is in fight mode.

The mother of 9-year-old Tony Merrill, diagnosed in August with an

inoperable brain tumor, said she is not giving up hope for her son’s

recovery.

“We’re trying to keep him alive as long as we can and pray for a

miracle,” said Dugan, who alternates between tears and tenacity when

talking about her son.

She has channeled her grief into exploring alternative treatments

and recently found a clinic in Texas that is using a drug in clinical

trials. So far, the drug has had promising results.

But she and Tony’s father, Bill Merrill, need to come up with

$20,000 in cash just to start the treatment. Since both of them had

to stop working to take care of Tony, the Westside couple is

struggling to come up with the large amount.

So they are looking to the community for help to save the light of

their life.

“We could sell our house and take the equity, but where would we

live?” Dugan said.

THE DISCOVERY AND DECLINE

Summertime is an idyllic time for kids -- no school, no homework,

no worries. Tony’s summer was no exception. He had a lot of energy

and a happy-go-lucky smile.

But toward the end of the summer, an intruder infiltrated his

carefree ways. It sapped his energy and made it an effort for him to

flash his dimpled grin.

The symptoms started appearing in August, Dugan said. The area

around Tony’s eyes got puffy and one of his eyes wandered a little

bit.

Dugan took him to a clinic and was told it was probably allergies.

But the medication he was given didn’t help. And he got worse, fast.

“He started to stumble a little, he was tired and aggravated,”

Dugan said.

So she took him to Children’s Hospital of Orange County in Orange.

They did a CT scan and then admitted him, but didn’t inform Dugan

and Merrill why right away, Dugan said.

It wasn’t until after doctors performed an MRI test that they got

the devastating news from a neurosurgeon: There was little hope for

his recovery.

While the neurosurgeon’s prognosis was grim, Tony’s parents were

buoyed a little by the oncologist’s projection -- that chemotherapy

could extend Tony’s life.

Tony’s cancer is so insidious because it is in his brain stem,

which controls a lot of functions, and because of the way it has

permeated into the stem, Dugan said.

“It’s like if you take Jell-O and throw sand in it -- it’s like

trying to take out the sand without touching the Jell-O,” Dugan said.

Tony stayed in the hospital for about a month. Then he underwent

chemotherapy and radiation for six weeks -- five days a week for four

to five hours a day, Dugan said. He finished the chemotherapy

treatment about a week and a half ago. It’s too early to tell how

well it worked, Dugan said.

The vibrant little boy who used to ride his bike and play is now

in a wheelchair. He is losing his hearing and his speech has become

slurred. His face is puffy and his eyes are droopy. It takes a good

deal of effort to hold his head upright. When he has enough energy to

muster a smile, he shines.

Thursday, Dugan and Merrill brought him to the Omelette Parlor so

he could enjoy a waffle, but outings like those are rare. Most of the

time, he sleeps, Dugan said.

SEEKING OTHER OPTIONS

During Tony’s chemotherapy at the hospital, Dugan talked to other

moms about treatments. Dugan said she heard about the Burzynski

Clinic in Houston from someone at the Wellness Clinic in Newport

Beach.

Doctors at the clinic suggest Tony start with a pill treatment and

then move on to an all-day IV pump, Dugan said. While he is supposed

to wait to start this treatment until eight weeks after his

chemotherapy ended, he might have to start it sooner, if he is not in

stable condition, Dugan said. The IV treatment runs about $8,000 a

month, Dugan said.

Dugan said she has talked to some parents whose children were

treated at the clinic, and those children are still living, Dugan

said.

As the holidays approach, Dugan and Merrill are single-mindedly

focused on saving their son.

“When you have someone with cancer, the whole world is going on

around you, but our world has come to a halt,” Dugan said. “I had one

outing with my friend since this started. I went shopping at Target

with my friend. And I cried all the time.”

Friday, the family flew to Houston to begin treatment, according

to Tony’s grandmother, Betty Dugan. She said that that another MRI

showed the cancer was moving outside the brain.

“They were very discouraged about the MRI,” she said. “But they’re

very excited about this clinic.”

Dugan said that her daughter and son-in-law were told doctors

would need to perform surgery in addition to the experimental

medication; however, Tony’s parents are optimistic about the future

and are not giving up the fight for his life.

“[Tony] is their only son. He’s very precious,” Dugan said.

* DEIRDRE NEWMAN covers Costa Mesa and may be reached at (949)

574-4221 or by e-mail at [email protected].