Rare spirit


POSTED: Monday, August 03, 2009

The first thing 13-year-old Gavyn Takamoto asked his doctor when told he had a very rare, very aggressive tumor, was whether he'd be able to go on a vacation in June.

A basketball-size tumor was removed from his abdomen, and a tumor the size of three grapefruits was removed from his pelvic area June 1 at Kapiolani Medical Center for Women & Children.

On Kamehameha Day the Highlands Intermediate School student flew to the mainland with his father, Kenneth Takamoto, and his best friend to see Disneyland and an Angels baseball game.

He was gone 21 days “;and the whole time bragged that he didn't have to take painkillers,”; said his aunt Sharon Ogata, who has been like a mother to him since his mother, her sister, died in 1996.

“;We want him to live his life to the fullest, but none of us felt he was up to going on vacation,”; said Dr. Darryl Glaser, oncologist. “;He is handling his intense treatment admirably and not letting it slow him down.”;

But the gutsy teen—who fishes, bowls, plays baseball and golfs—said he did not want to talk about what he is going through. “;I'm not that special,”; he told his aunt. “;You know how many sick kids are at the hospital?”;

Gavyn was there July 20-24 for another aggressive chemotherapy treatment but left Saturday with his father on an anxiously awaited Hawaii Make-a-Wish Foundation trip to fish and dog-sled in Alaska.





        A fundraiser is planned to help defray the costs of medical treatment for Gavyn Takamoto, from 4 p.m. to 8 p.m. Aug. 16 at Ige's Restaurant & 19th Puka, Kaahumanu Street and Moanalua Road, across from Buzz's Steak House, Aiea. For more information, call Sharon Ogata, 226-9324.



The irrepressible youth has desmoplastic small round cell tumor, known as DSRCT, a cancer of connective tissue, blood vessels or fibrous tissue that surrounds and supports organs.

It is so rare, Glaser said he had not had a patient with that particular tumor before. It was not described well until the 1990s, he said, explaining it does not respond well to chemotherapy by itself or radiation therapy by itself.

“;Even if we try to remove it all with surgery, areas tend to grow back,”; he said. “;Until recently it wasn't curable.”;

But there have been reports of cures with an “;aggressive multimodality”; approach, including aggressive strong chemotherapy and intense radiation therapy, sometimes followed by a bone marrow transplant, he said. Gavyn is in the middle of that, he said.

The National Cancer Center's Surveillance, Epidemiology and End Results database covering 26 percent of the U.S. population, including Hawaii's SEER Program, lists 131 cases of rare disease out of 2,359,786 cancers typically classified under the category of a soft-tissue tumor from 2000-2006. This represents less than 1 per 10,000 cases, the NCI said.

Glaser said the rare cancer occurs most commonly in adolescent males but can occur in females. “;It usually shows itself as a very large tumor in the abdomen or pelvic area.”;

Gavyn's abdomen had been swelling and getting bigger for some time, but nobody suspected a tumor, he said.

The boy's aunt said he had been complaining for about a month about back pain, then noticed some bumps on the back of his leg.

“;We want parents out there to know this kind of cancer exists because it is so rare,”; Sharon Ogata said. “;Listen to your kids when they say their back is sore.”;

Gavyn went to a pediatrician for a school checkup to play sports, and the doctor noticed his belly was swollen and ordered a CAT scan, Glaser said.

It showed a very large tumor, and a biopsy was done early in March, he said. “;That surprised everybody, showing this very rare type of tumor.”;

Gavyn's grandfather Byron Ogata said his research on the rare tumor shows it normally occurs from 11 to 20 years old and rarely in females.

He said Gavyn had three chemotherapy treatments to shrink the tumor, then it was decided to do surgery and Gavyn asked the pediatric surgeon, Dr. Sidney Johnson, to take pictures of the tumors.

“;If you look at it, you just can't believe it,”; said Gavyn's aunt, calling Johnson “;a true miracle worker.”; She said the surgery took about 7 1/2 hours, with the tumor in the pelvis area taking most of that time because blood vessels were connected to parts of the intestine.

Gavyn is fortunate, she said, because “;the tumor is known to connect to major organs, which is one reason kids don't survive it,”; and his tumors were not connected to a major organ.

“;Gavyn idolizes him (Johnson) so much. He saw the tumor and realizes what Dr. Johnson had to do to get it out in one piece,”; she said. He said, “;These pictures inspire me.”;

Glaser said, “;Dr. Johnson did a fantastic job of getting huge tumors out of Gavyn, and Gavyn has done a great job, too, having this huge surgery, hours and hours long.”;

Now, he said, “;Gavyn has started down this road to try to cure him”; with more chemotherapy after four or five courses of therapy, a biopsy and major surgery.

He said Gavyn “;made us get him out of the hospital”; in time to go bowling on Saturday a week ago. And they had to time his chemo so he could go fishing in Alaska, Glaser said.

He and his father are spending a week doing different kinds of fishing and taking a dog-sled ride.

“;He's living his life despite what he's had to do to cure it,”; Glaser said. “;He's a very funny kid. He keeps the nurses in stitches. He's very social.”;

“;One thing about Gavyn,”; said his aunt, “;his spirit is really great. The rest of us just admire him. He knows what he has, but he's just so determined he's going to beat this. He keeps a positive attitude. He always says he has something to look forward to.”;