UNLESS you or someone close has experienced leukemia, said Dustin Wunderlich of Nesconset, it is impossible to really grasp what cancer of the blood is really like.
The chemotherapy is potent, weeks are devoted to hospital confinement and hope can hang on the results of a single blood test.
Wunderlich, 25, learned on Dec. 9, 2008, that his exceptional fatigue and inflamed, irritated and occasionally bleeding gums were symptoms of a malignancy developing deep in the marrow of his bones.
"It took quite a while, and several trips to the dentist and to the regular doctor, before somebody had the good idea to get a blood test and that's when everything hit the fan," said Wunderlich.
Only months after completing chemotherapy, Wunderlich also holds down a day job, working for aRonkonkoma company selling electronic components to military contractors. As an advocate, he helps organize bone marrow donor drives and highlights patients' stories On his Web site, www.2prevail.org, he has raised awareness about Penny Lindenberg, 39, a Ridgemother of two. She needs a bone-marrow transplant in her fight against leukemia. A bone marrow drive on her behalf is scheduled for 10 a.m. to 2:30 p.m. Sunday at the Ridge Fire Department, 20 Francis Mooney Drive, in Ridge.
Acute myelogenous leukemia (AML) is rare in people younger than 40, but persists as a relatively common form of leukemia in older adults. It is characterized by aberrant myeloid cells - white blood cells that, when normal, develop into both red and white cells that populate the blood supply. Doctors began a chemotherapy regimen for Wunderlich designed to wipe out the white cells crowding out healthy ones in his marrow. Wunderlich received the last of his many months of chemo doses in August - and a clean bill of health. He's in remission.
"From what I am being told I won't need a bone-marrow transplant," Wunderlich said. "And as I see it, I'm done [with treatments], and will live a very long time. I am 25, so that's my story."
Dustin Wunderlich brings a little joy while visiting a patient in the hospital. Photo from Dustin Wunderlich
Dustin Wunderlich loves the night life at Stony Brook. But instead of partying at the university, the 27-year-old volunteers at the Stony Brook University Medical Center as a support person for cancer patients.
"At night is when patients have the hardest time," Wunderlich said. "That's when they're physically and mentally struggling." The Nesconset resident had two bouts of acute myelogenous leukemia and a bone marrow transplant to save his life.
Wunderlich is the founder of Prevail Non-Profit Corp., a group dedicated to helping cancer patients physically, mentally and financially.
In December of 2008, and again in April of 2010, Wunderlich was afflicted with AML. The disease is rare in people under 40, and was an eye-opening experience for the young man. "I went from being indestructible to being a patient," Wunderlich said.
It was during these dark times Wunderlich learned to overcome adversity — a sickness that could have cost him his life.
"It just destroys your entire body," Wunderlich said of his treatments. "In order to fix you, you must be broken down into nothing; then rebuilt."
Wunderlich said he went through an intense "mental roller coaster," which was the hardest part of his treatment.
Wunderlich didn't go through his ordeal alone. He cites his friends, family, nurses, doctors and all supporting people at the hospital as a major help.
His hospital room, where he spent four months last year, always had visitors, decorations, flowers and entertainment.
As Wunderlich recovered, he realized how fortunate he was. He said eight out of ten hospital rooms looked like a hospital room while his didn't. It was at this point, that the Prevail Foundation started to take root.
"This was Dustin's dream when he got diagnosed," Steve Wunderlich, Dustin's father, said. "My wife and I jumped into it."
Prevail functions with the same support system Wunderlich used for his recovery: his friends, family and girlfriend. They help organize events and fundraisers and support patients and families going through any cancer treatment.
Dustin's father is involved in bone marrow donor awareness, and his mother specializes in providing support to the families of patients. "I'm hoping we can teach other people before they go through it," Debbie Wunderlich, Dustin's mother, said.
Wunderlich regularly goes to hospitals at night to visit patients because he feels it is easiest to communicate and touch base with them at night when there are less distractions. He said he was recently with a patient from 11 pm to 1:30 am to prepare her mentally for her first day of treatment.
The first thing he told the patient, or anyone else he supports, is to prepare for the "mental roller coaster," and emphasize improvement over the pain.
Wunderlich cites getting a laptop donated to the Stony Brook Hospital for patients' use as a victory for the Prevail Foundation because it creates a welcome distraction.
His newest pupil is Matthew Mockler, 7, of Selden. Mockler was diagnosed with acute lymphoblastic leukemia, and Wunderlich is supporting the young man as well as organizing a fundraiser for him on July 31, at Momo's Sports Bar & Grill in Holbrook.
Wunderlich has high expectations for Prevail's future. He wants a physical location for cancer patients, survivors and their families to go to swap experiences and encouragement to help each other through their tough times. Wunderlich also said he wants to recruit as many willing donors as possible to the bone marrow registry. Debbie Wunderlich said only 25 percent of siblings can provide bone marrow to each other, so it is difficult to find a good match.
Most importantly, he said that when the perspective donor does get a call to donate, they need to follow through with it. By not going through with the donation, it not only creates a false hope, but it could cost the life of a patient that could otherwise be saved.
For now, the main base of operations for Dustin and Team Prevail will be his website, www.2prevail.org. There users are given news on the organization's efforts, as well as a way to contact Wunderlich directly. He also regularly answers emails concerning Prevail and cancer treatment at firstname.lastname@example.org.
STONY BROOK, N.Y., January 10, 2013 – Stony Brook Cancer Center has initiated a free transportation service for cancer patients to and from their homes throughout Suffolk County in an effort to provide access to care for patients who need chemotherapy and radiation treatment, and have limited resources to get to the Cancer Center.
The Non-Emergency Transportation (NET) program began in November and operates Monday Through Thursday from 8:30 AM to 4:30 PM. Recommendations for the service comes from Cancer Center social workers; already more than 25 transports have been made. To qualify for the service, patients complete an application signed by their medical provider.
Acording to Yusuf Hannun MD, Director, Stony Brook University Cancer Center, Vice Dean, Cancer Medicine and Joal Kenny Professor of Medicine, most patients undergoing chemotherapy or radiation therapy requires frequent visits to the hospital.
"Transportation has been an obstacle for many of our patients who live in Suffolk County," said Dr. Hannun. "Offering free transportation to and from the Cancer Center is one more way we can serve our patients and ease the burden of their treatment journey."
The idea of the transportation service was initiated by Linda Bily, Cencer Patient Advocacy & community Outreach Coordinator, and Darline Kenny, LCSW, Social Worker at the Cancer Center. Debbie Wunderlich, a member of the Cancer Center's Advisory Board & Treasurer of Prevail non-profit from Nesconset, N.Y., arranges for the bus to be donated by We Transportation in Nassau County. The vehicle was painted by volunteers from Splashes of Hope, a non-profit agency based in Huntington, NY. Penny's Country Car in St James NY, donated repair services. Through an online voting co-sponsored by Warex Terminals Corporation and CITGO Petroleum Corporation and its fueling good program, Stony Brook University employees helped win $5000 in free gas for the vehicle
"This is a unique hospital-based program," Bily said. "Obtaining and refurbishing the bus was a true community partnership in every sence of the word."
For more information call 631-638-0913 or 631-638-0004