Written by Christy Hinko Friday, 27 August 2010 00:00
Trains, trucks, baseball. Sounds like the list of a few things any normal 8-year-old boy would love and it is the list of things Jake Amato loves most. Jake is entering third grade this year at Northside Elementary in Farmingdale, but his plight with childhood leukemia keeps him from school and playtime on most days. He was diagnosed with cancer when he was only four years old.
His family had some relief last year when they believed it had gone into remission, but it has returned. Although childhood leukemia, a cancer of the blood and bone marrow, is the most common cancer among children and mostly curable, Jake is in the eight percent of all relapse cases. He is presently undergoing chemotherapy treatments at Cohen Children’s Medical Center (formerly Schneider’s) in New Hyde Park. The chemotherapy treatment could sustain him for two to three years and keep his leukemia in remission.
Debbie Amato, Jake’s mother said, “The greatest hope of his recovery and survival, and the chance of it [leukemia] not coming back is a bone marrow transplant.”
The family has teamed with DKMS Americas, a bone marrow screening organization that has matched more than 20,000 donors with patients waiting for bone marrow transplants. Its registry grows with each screening held, with nearly 2 million registered.
On Sunday, Aug. 29 from 10 a.m. to 4 p.m., DKMS will be at the Weldon E. Howitt Middle School at 70 Van Cott Avenue in Farmingale to educate potential donors on the bone marrow transplant process, screening donors and accepting donations to advance the match potentials.
The upcoming donor drive is what keeps Debbie motivated and driven in the last two weeks leading up to the donor screening. “I have not been happy like this in a long time,” said Debbie. “My sons, Kenny and Jake, I have to go on for them, and my husband, Ken, is also having a hard time, I mean, I too struggle, we both have good days and bad days, but it’s hard, it’s a really hard thing.”
The Amatos do not take simple pleasures for granted, they forgo family vacations and bowling and playing publicly indoors and going to birthday parties rather than jeopardizing Jake’s immune system. He is allowed to play outdoors occasionally and have a friend or two over for play dates, but he’s a typical kid who just wants to play.
“You want your kids to have the childhood that you had, but my children don’t know anything different, this is the life that they know, this is their normal,” said Debbie. “He’s like a little mayor everywhere we go; he’s got more energy than you can imagine, he just wants to go, go, go and just wants to be a kid.”
Becoming a bone marrow donor can easily be intimidating and misunderstood. At the screening event, there will be comprehensive information about becoming a match and the bone marrow transplant procedure. The act of saving someone’s life by donating bone marrow involves an outpatient procedure under general anesthesia; up to a liter of bone marrow is extracted from the donor’s hipbone and transferred to the cancer patient. The screen process however, takes just a few seconds. It is as simple as a cotton swab sample from inside the cheek. Intentional donors that are unable to attend Sunday’s screening can order a free at-home kit and registry application that is returnable by mail. Kits can be ordered at www.getswabbed.com.
“Talking to Jake’s mom reminded me of my father’s determination to do whatever he could to save my mother’s life. I admire Debbie’s courage. DKMS will do whatever we can to recruit more donors,” states Katharina Harf, co-founder, DKMS Americas.
Jake has several potential matches within the national bone marrow registry, but they have not come close enough to meeting all of the criteria suitable to Jake. The intention of this donor screening is to find the perfect match and register potential donors for all cancer patients waiting for a match. DKMS reports that only 4 of 10 patients needing a bone marrow transplant will ever find a match.
Jake’s doctors presented the idea to his mother to host a bone marrow drive, suggesting that a local screening may increase the likelihood of finding his match and taking Jake off of chemo-therapy treatments. Debbie weighed the options for more than two weeks, not knowing if she had the endurance to take on such a huge task alone. She spoke with her best friend, Christine Michels about the donor drive and from that a rapid network of support grew for the idea.
Dozens of local organizations, businesses and individual volunteers have come forward to help the Amatos broadcast the information about the upcoming donor drive and organize local fundraisers. A private fundraiser is planned for Thursday, Sept. 9 at Mulcahy’s of Wantagh from 7 p.m.
“When we picked a place to live, we picked right; the outreach efforts are really amazing, you don’t know how hard people are working and it’s so heartwarming,” said Debbie. “If this doesn’t help Jake, I just feel in my heart that it will help somebody and if we’ve helped one person, then we did our job.”