4-year-old hoping to get cancer treatment in England

MARTINEZ, Calif. - A Martinez family is holding onto hope that their four year old daughter can receive cancer treatment in England, unavailable to children in the U.S.

"She's the best, just the best kid, " father David Massuk told KTVU as he arrived Thursday at UCSF Mission Bay with his four year old daughter Melody.

Melody, mom Melissa and little sister Miley, have been making regular trips to the Brain Tumor Center sine Melody's diagnosis in January.

"Melody doesn't complain about going to the hospital," noted her dad, "she just goes with the flow."

But the youngster's gait is a bit wobbly, one of the symptoms her mom noticed in the beginning, along with fatigue and blurry vision.

The diagnosis: Diffuse Intrinsic Pontine Glioma, or DIPG, a rare form of cancer that primarily strikes child under age ten.

"If love could make this thing go away, there'd be no problem, you know?," said David emotionally, "but that's not the case."

Melody recently finished several weeks of radiation, and the family came to UCSF to review her recent MRI scans for signs of changes in the tumor.

"I notice she has more weakness on her right side, and she never had that before, said Melissa, once in the exam room with Melody's doctor.

"It's intertwined with healthy brain tissue, so you can't take it out," explained Dr. Sabine Mueller, Center Director.

"If you take it out, you kill the patient," Mueller told KTVU, "and so with these families you go from diagnosis to an end-of-life discussion. It's really one of the worst cancers out there."

About three hundred children die from DIPG tumors each year, usually within six to nine months.

Clinical trials are always underway, including at UCSF, but the program Melody's parents are trying to get her accepted to, is at a research hospital in the U.K.

"They put catheters directly into the tumor, "explained Dr. Mueller, "and then you can infuse medication directly into the brain tumor."

It's a therapy approved for adults in the U.S. but not FDA approved for children.

British doctors believe that by administering medication directly to the tumor, they bypass the  blood-brain barrier that makes oral and intraveneous delivery less effective.

Optimistically, the family hopes to be planning a trip to Bristol, England, by mid-May, for Melody's first treatment, which would require a one week stay.

Three more visits would be neccessary over the course of the spring and summer.

They have to pay for travel and lodging, program fees, and the $14,0000 per dose price of the drug.

"There are so many people we want to thank for helping us, " Melissa Sullivan told KTVU, "it's amazing and we are so blessed."

A "GoFundMe" account for expenses has raised about $80,000 and continues to grow.

"It's just sad that it's not available here," noted Melissa, "I mean, why do we have to go out of the country to get this groundbreaking treatment?"

"We're going to take her anywhere we can, we're going to raise the money, " declared David, wiping away tears. " We are going to be able to say we did everything we could possibly do, we're not giving up."

After several hours at the hospital, Melody and her family were finished for the day, and she was looking forward to her reward, frozen yogurt.

"You got you blood drawn and you were brave, you didn't cry," praised her mom."

The fund to help Melody is www.gofundme.com/help-melody.