If presented with a decision you do not wish to make, especially if told you have no choice, don’t do it. Don’t accept the unacceptable because you are told there is no other way to go. There is (almost) always another way. I will share with you a true story that recently happened to make my point. It may seem like the telling of a miracle.
A man I know, who lives many hundreds of miles away, was having abdominal pain and his abdomen was somewhat distended, so he made an appointment and went to see his primary care physician. The doctor palpated his distressed area, front and back, and sent him for imaging tests. Of particular concern was the fact that the patient had come into this world with only one kidney. When the results came back, the prognosis wasn’t good. He was sent by his doctor to an oncologist.
At this next appointment the grim news was confirmed. He had a cancerous tumor on the kidney, and the organ would have to be removed. That meant he was fated to be on dialysis the rest of his life. The oncologist then sent the patient along to an oncology team that specialized in cancerous kidney surgery in a big city hospital. The appointment was for four days later, and while he waited, the man did extensive research on the internet, learning everything he could about cancer of the kidney. At that next visit, the diagnosis was repeated and the team urged what they believed to be the inevitable: arrange to have the stricken kidney removed.
Three doctor appointments, and at all three, there was agreement as to the diagnosis and treatment. Realizing that he was about to have his life altered, and determined to make one more try at changing the outcome, he returned to the internet. One physician in particular, the renal department chairman of a research hospital, had been impressively profiled. The hospital was in a different part of the country, and COVID-19 was beginning to close down most airline flights. With little expectation of actually being seen by this specialist, and while he was worried about how he might get there and return, he nonetheless picked up the phone and called the department. He was given an appointment almost immediately. He almost didn’t accept it when he was told that he couldn’t bring his test results with him, that those tests would have to be done all over again. But in the end, he went.
It took three flights before he reached his destination, and together with his family, he checked into the hotel opposite the hospital, as he had been instructed to do.
For the next two days, there were extensive tests, and then the chairman told him the conclusion: the chances were 95 percent that they could save his kidney. He wheeled around and hugged the doctor.
Three days after the surgery, which involved a technique called modelling accompanied by 3500 pictures of the diseased kidney, he walked out of the hospital, holding his family tightly around him. The doctors told him the wondrous news. He was cancer free. The tumor had not yet begun to spread.
He had found the right person to deal with his problem because he refused to accept the original path laid out before him, even though he had been told there was no choice. He was determined to find another way, creative in his casting about for an alternative and tenacious enough to transcend the obstacles on his way to a successful outcome.
I have known this story for more than a month, thrilled by its outcome yet not wanting to invade the privacy of the principals. So I have not identified any of the people or institutions involved. But I believe it is an experience that must be told to be of possible help for others. And the choices one is presented with don’t have to be life threatening. They can just be part of daily life. The moral is still the same.
Dawn Blatt is to be one of 14 people to be the face of a national campaign for colorectal cancer awareness. Photo from Fight CRC
By Julianne Mosher
A local Miller Place woman is spreading the word that colonoscopies can help save a life during National Colorectal Cancer Awareness Month this March.
Dawn Blatt is to be one of 14 people to be the face of a national campaign for colorectal cancer awareness. Photo from Fight CRC
When Dawn Platt was diagnosed with stage III colon cancer in 2016, she knew she wanted to use this experience to help others.
“Four days after my first colonoscopy, I heard those three words, ‘you have cancer,’ and it changed everything,” she said.
Then just 51 years old, the Miller Place resident went through surgeries and chemotherapy to fight it. Now, four years later, she’s in survivorship mode and doing a lot better. “There’s no evidence of disease,” Blatt said. And now her goal is to get the word out.
“I knew that I had to make this into something positive that can be an impact to other people,” she added.
Last year, Blatt became an ambassador for Fight Colorectal Cancer, the nation’s leading colorectal cancer advocacy organization. One of 14, she will be featured in a national campaign to promote awareness of colorectal (colon and rectal) cancer, which is the second leading cancer killer in the U.S. for men
and women.
“Each year Fight CRC selects a group of ambassadors from across the country to represent our community year-round,” said Anjee Davis, president of Fight CRC, in a statement. “They bravely rally to raise awareness for this disease. … We hope their stories resonate with people and provoke the over 30 million people aged 45 years and older who have not been screened to get screened.”
Officially launching in Times SquareFeb. 26, the public service announcement will appear during the NASDAQ Opening Bell Ceremony at 9 a.m. Her story will also be featured on Fight CRC’s social media pages starting in March. She will join the organization by heading down to the Capitol for a call on Congress to discuss issues and advocate funding for cancer research.
“Colon cancer can be preventable,” Blatt said. “I want to help people and if I can talk to legislators about it, then I’m going to.”
Sixty percent of colorectal cancer deaths could be prevented with screening, especially if someone knows that it runs in their family. “After joining Fight CRC, I have seen and heard a lot,” Blatt said. “It’s important to get yourself checked out in your 50s, but even now for people in their 20s and 30s.”
She’s hoping that her advocacy will save someone’s life. “Colonoscopies may not be the most pleasant thing, but it’s better than surgery and chemo,” she said. “Go get checked out. … Knowledge is power.”
Blatt added that Friday, March 6, is Wear Blue Day to raise awareness and fight CRC.
When the Town of Huntington’s planning board originally authorized in 1965 a site plan for the Northport power plant’s first generating unit on the shores of the Long Island Sound, the impact on the greater safety, health and general welfare of the community was an overarching concern. In fact, the town’s approval stipulated that plant operators were required to submit emissions reports to the town, which were subject to regular review by town officials.
Today, the plant has expanded to four units, and while the town is still searching for records, officials do not know the last time the plant submitted an emission report from on-site monitors for a review. Town attorney Nick Ciappetta said the town is reviewing whether or not it has monitoring authority. The EPA and DEC, he said, have jurisdiction over plant emissions.
Some lawmakers firmly disagree, and State Sen. Jim Gaughran (D-Northport) is calling for action.
“The town has had more power than it’s realized,” he said. “It should take whatever action it needs to take.”
Gaughran said he regularly drives past the plant and smells foul odors. Last year, he requested a state health investigation after learning that graduates of Northport High School Class of 2016 were diagnosed with leukemia and lymphoma, after community members said they want to know if the plant’s emissions are a factor.
State health department investigators have now expanded their study to look at cancer rates in a broader population to look for patterns. (See story on Page A3) With that investigation underway, Gaughran finds it prudent to take steps to better protect the community.
Town Council member Joan Cergol agrees.
“If the Town, in its rezone of the property, or any of its agencies or boards in the 1960s imposed conditions on LILCO to protect the health and safety of Huntington residents, then it stands to reason that its successors should be bound by the same,” she said.
It is unclear what action if in any will be taken, but some are saying additional precautions would be prudent.
Danielle DeSimone is one several young adults diagnosed with leukemia from the Northport High School Class of 2016, who received a bone marrow transplant and is now in remission. She said she would absolutely support any policies that would better protect the public’s health.
“May no more families be faced with this burden unnecessarily,” she said in an email.
As the state’s health investigation continues, and as the town bears the additional burden of fighting LIPA and National Grid, spending $4.2 million to date, many people are looking at the plant with a discerning eye.
According to the DEC, the Northport Power Plant emissions are in severe violation of state and federal the air pollution standards for nitrous oxide and VOCs, which contribute to ozone. When inhaled, ozone chemicals react chemically with many biological molecules in the respiratory tract, the EPA reports, leading to adverse health effects.
It’s difficult to know whether or not a specific environmental toxin will cause a particular individual to develop cancer or other diseases, according to a 2003 report “Cancer and the Environment” published by the U.S. Department of Health and Human Services.
But significant sources of VOCs are chemical plants, gasoline pumps, oil-based paints, autobody shops, and print shops. Nitrogen oxides result primarily from high temperature combustion. Significant sources are power plants, industrial furnaces and boilers, and motor vehicles, according to the state Department of Environmental Conservation Permit Review Report from February 2019.
In response to inquiries,National Grid spokesperson Wendy Ladd said, “we submit our emissions report to the EPA and NY DEC.”
The DEC states that ozone is a regional air pollutant and most human and economic activity in the NYC metro area contribute in some way to ozone exceedences.
“If the DEC finds any facility poses an imminent threat to public health or the environment, the agency works to address the situation immediately,” said DEC spokesman Kevin Frazier.
Correction: An earlier version of this story reported that the Town Attorney Nicholas Ciappetta said that the town had no authority over emissions monitoring. The town is actually still reviewing the matter. (updated 1/29/2020)
Enrico Scarda, owner of Danfords, with Jami Cohen at the fundraiser for her sister. Photo by Julianne Mosher
By Julianne Mosher
The Brookhaven Ballroom at Danfords was filled with hundreds of people to celebrate and support one of their own this week through the family’s bout with cancer.
Dara Cohen. photo from Dara’s GoFundMe health fund
Dara Cohen, originally of Dix Hills, has been living under the weight of cancer for years, battling Stage 4 breast, brain and lung cancer, and now friends said it has metastasized in her lower spinal cord. The actress and professional dancer works as a ballet teacher when she feels up to it, but the disease has had a lasting effect.
It was just a few months ago when Dara Cohen’s sister, Jami, who bartends at the hotel in PJ, came to work and asked her managers if they could help her create a fundraiser.
The goal was to raise $100,000 for the 46-year-old dancer, singer and actress.
“They immediately said yes,” Jami Cohen, of Port Jefferson, said. “I couldn’t ask for better people to work with.”
On Monday, Nov. 11, Danfords donated its space upstairs and an extensive menu at its buffet to the Cohen family.
“Obviously it’s an unbelievable cause,” Enrico Scarda, owner of Danfords, said, “And we do whatever we can to support our employees.”
Lamar Peters with Gail King and Shelly Cohen. Photo by Julianne Mosher
A DJ blasted music while people mingled. Lamar Peters, a tribute artist known for his Elvis, Johnny Cash and Buddy Holly impersonations, came out to play, and over 100 gifts were donated to the raffle table.
“All of us are here to unite and break course for Dara,” Dara’s father Shelly Cohen said. “We’re looking to make a difference and these people are coming out to help our daughter.”
Tickets were $40 for the three-hour event and the outcome was a huge success. Although Dara couldn’t be in attendance, she video-called in and was grateful for the response given in her honor.
Known for her popular social media posts chronicling her journey, Dara’s goal has been to help other people struggling as well.
“She’s an amazing person,” Dara’s mother Karen Deangelis, said. “Dara has made an impact on other people and has a tremendous amount of support … Hopefully we can help other people, too.”
Ryan Augusta and two of his children. Photo from East Wind
The culinary industry will come together to support an executive chef who is currently battling an aggressive and rare cancer. On July 31 from 7 to 11 p.m., East Wind Long Island in Wading River will host a Super Ryan Fundraiser in honor of Ryan Augusta, who in 2018 was diagnosed with squamous cell carcinoma.
Ryan Augusta’s kids dress up as Superman to support their father. Photo from East Wind
After undergoing surgery and medical treatments, it seemed that the cancer was in remission. However, recently he found out that the cancer had returned and is now more aggressive. Augusta has endured another major surgery and will undergo 34 rounds of radiation and chemotherapy treatments, causing a financial strain to his family.
Augusta has been working at East Wind for over three years and manages a staff of about 50 people. The executive chef lives in East Northport with his wife, Christa, and their three children.
Christa Augusta said she is blown away and thankful for what East Wind is doing.
“They put this all together on their own, as soon as they found out about his [Ryan’s] surgery in May,” she said.
The mother of three said she is grateful to all the people, staff and chefs putting in time and energy into the fundraiser.
“We are looking forward to a great night with people we love,” she said. “This will give my husband strength.”
Charlotte Cote, director of marketing at East Wind, said Augusta’s work ethic is second to none.
“It is a pleasure to work with Ryan on a daily basis — he is the type of person that makes your job easier because he’s always ahead of the game and his staff is ready to go,” she said.
The fundraiser will feature well-known professional chefs and restaurateurs from Long Island to Las Vegas who dedicating their talents to the event. Each chef is expected to have an active workstation.
Sixteen professional guest chefs will lend their talents to the fundraiser, including local chefs such as Steve Gallagher of The Trattoria in St. James, John Bauer of Danfords in Port Jefferson, Justin Scarfo of Ruggero’s in Wading River and John Louis, of Maui Chop House in Rocky Point.
Food purveyors will be Prime Foods & Braun Seafood, all brought together by Ralph Perrazzo from BBD’s Las Vegas-Beers Burgers Desserts
Ryan Augusta, top, Christa Augusta, bottom, and their children. Photo from East Wind
“Chef Ryan is a valued member of our close-knit family here at East Wind and we are committed to give him our unconditional support for his hard work and dedication in this time of need,” Lou Ambrosio, general manager at East Wind said.
Five breweries will also be on hand serving their signature brews, including Sand City Brewing Company of Northport, Barrier Brewing of Oceanside, Root & Branch in Copiague, Evil Twin in Ridgewood and Grimm in Brooklyn.
“I’m truly fortunate to have amazing friends in this industry who will always show support in time of need,” said Ralph Perazzo of BBD’s Las Vegas-Beers Burgers Desserts.
The fundraiser will include a buffet, live DJ, beer, wine, soda, a Chinese auction and a 50/50 raffle. Raffle prizes include a two-night stay at Foxwood Casino Resort with dining and spa credit plus other prizes.
Tickets are $75 per person or $700 for a table of 10. Tickets can be purchased here. All proceeds go directly go to the Augusta family.
If you are unable to attend, Augusta’s family have set up a GoFundMe page, which will help with medical costs that has already raised over $4,500 of a $50,000 goal. People wishing to donate can visit here.
This post has been corrected to reflect Augusta still has to undergo treatment.
Lisa Pepper-Byron. Photo from Help Lisa Medulloblastoma Treatment andCare GoFundMe page
A native of Shoreham is in need of help.
Lisa Pepper-Byron, a mother of three young daughters ages 2, 6 and 7, was diagnosed with medulloblastoma, a cancerous tumor that starts in the brain and spreads to the spine, in December 2018.
Earlier last month, members of her family created a GoFundMe page in her name. Pepper-Byron now resides in Concord, North Carolina, along with the majority of her family and was working as a wedding planner before she was diagnosed, and she currently lacks health insurance. Since she has started radiation treatments, she is unable to work and support her family, according to the GoFundMe page.
Jamie Pepper, one of the Shoreham native’s sisters, said her sibling is a giver and tries to be the best role model she can be for her young daughters.
Lisa Pepper-Byron with her three daughters. Photo from Help Lisa Medulloblastoma Treatment andCare GoFundMe page
Pepper-Byron grew up and lived on Long Island for much of her life, graduating from Shoreham-Wading River High School in 2002 and during her high school days worked at Mr. G’s Pizza in Wading River. The mother of three only moved to North Carolina in the past few years.
The GoFundMe campaign has already raised close over $7,300 of the $200,000 goal within a month, with 127 individuals having donated. The is a currently trending campaign on the site.
“Lisa is really overwhelmed with the amount of support she has been receiving,” Pepper-Byron’s sister said. “She is doing her best to remain strong during this
difficult time.”
Pepper-Byron recently underwent surgery to remove two tumors from her brain to try to prevent the cancer from spreading to her spine. After the surgery, she began another round of chemotherapy.
“Our family is very grateful for the amount of love and generous contributions Lisa has been receiving on her GoFundMe campaign,” Pepper said.
All funds collected from the campaign will go for treatments, medications, a reliable vehicle and short-term expenses for her and the family. The family hopes people support the campaign so that Pepper-Byron can undergo her chemotherapy treatments without the worries of all the expenses involved. You can donate to campaign at https://www.gofundme.com/help-lisas-brain-cancer-treatment-and-care or can send contributions to the Pepper Family at 101 Georgia Street NW, Concord, North Carolina, 28025.
Map of 1,4 Dioxane across Long Island by highest level detected within each water district. Photo from Citizens Campaign for the Environment
Many have attributed New York state of having “the champagne of drinking water,” though in recent years concerns over water quality have grown, especially on Long Island.
After toxic chemicals have been found in Long Island’s drinking water, 1,4-dioxane, has been found to be the chief concern on the Island, and currently it is not regulated by the state.
The chemical has been designated by the U.S. Environmental Protection Agency as a likely carcinogen associated with liver and kidney damage after a lifetime of exposure to contaminated drinking water.
Images: The Citizens Campaign for the Environment shares the test results of common products for 1,4-dioxane. From Citizens Campaign for the Environment
In March, 1,4-dioxane was found in private drinking wells of two homes on Oakside Drive in Smithtown where results showed concentrations higher than 1 part per billion, which is the proposed recommendation by the New York State Drinking Water Quality Council in December 2018. It is not a definitive standard, and the state Health Department is expected to propose a water standard for 1,4-dioxane in the near future.
As a result of the uncertainty surrounding the Island’s drinking water, the Suffolk County Department of Health Services, beginning on March 25, sent informational letters and planned on visiting the 29 homes served by the wells along Smithtown’s Landing Avenue, Oakside Drive and Valley Avenue. From there, each homeowner would set up an appointment with the SCDHS and its staff will come and secure water samples from the wells.
Grace Kelly-McGovern, public relations director at SCDHS said as of April 10 every homeowner received a letter regarding the surveys and 15 of the wells at these homes have already been sampled. Three more homeowners have requested samplings, but the department has yet to receive a response from the other 11 homeowners.
According to Kelly-McGovern, once the samples are collected, they will be sent to the Hauppauge SCDHS lab, along with the New York State lab in Wadsworth, and will be tested for 1,4-dioxane and other contaminants. The process should take one to two months. She added it could take several months until homeowners are notified of the results of the samples.
A concern of 1,4-dioxane is that it can’t be removed through conventional treatment methods and involves a complex process of mixing the contaminated water with hydrogen peroxide, treated with ultraviolet light and then gets sent to tanks filled with carbon where the rest of contaminants are filtered out. The Suffolk County Water Authority’s Central Islip treatment system currently has the sole advanced oxidation process system capable of removing 1,4-dioxane on Long Island, though it required state approval to get it.
At a forum in early February, the Long Island Water Conference estimated the cost of treatment systems for close to 200 water wells contaminated by 1,4-dioxane to be at $840 million. Implementing these treatment systems, they said, could lead to higher water rates for homeowners.
The conference coalition asked for additional state aid and for a delay in when they would have to meet the standard.
As the issue for Long Island’s water providers continues, the SCWA board voted to create the first tiered-rate structure in the agency’s history April 1.
The new rate structure took effect the same day and the base drinking water charge for all customers will increase from $1.95 per thousand gallons to $2.028 per thousand gallons.
Images: The Citizens Campaign for the Environment shares the test results of common products for 1,4-dioxane. From Citizens Campaign for the Environment
The new tiered rate will be $2.34 per thousand gallons for all consumption over 78,540 gallons per quarter. Customers will only pay the tiered rate on water above 78,540 gallons per quarter, and the standard rate up until that point.
According to the authority, the action is in accordance with an initiative undertaken by the New York State Department of Environmental Conservation, which established a goal for suppliers of reducing peak season water use by 15 percent by 2021 in order to ensure the sustainability of water resources.
“Conservation rate structures have been adopted all across the country to encourage Americans to adjust their water-use habits for the long-term preservation of available water resources,” Jeffrey Szabo, the SCWA chief executive officer said in a press release. “We expect the new rate structure to help protect ratepayers who are careful in their water use and help provide the continued viability of our aquifer system.”
The 1,4-dioxane chemical has also been found in industrial solvents. A March study released by the Citizens Campaign for the Environment indicates the chemical is present in 65 of 80 household products tested, including baby products, shampoos, detergents and body washes. According to Adrienne Esposito, CCE executive director, the products were tested by the ALS environmental laboratory in Rochester which is certified by the state Department of Health.
The CCE argues that the chemical could end up down the drain and seep into drinking water through septic systems or wells.
Similarly, state Assemblyman Steve Englebright (D-Setauket) has introduced a bill that would ban household products containing 1,4-dioxane in the state except in trace amounts. The bill is currently in committee.
This post has been changed to reflect the accurate location of the SCDHS lab and other lab to be doing the water testing.
Sixth grader Lucas Caruana gets his hair cut. Photo by David Luces
Daniel Mankes of East Northport has his head shaved. Photo by David Luces
Ninth grader John Reina has his hair cut for charity. Photo by David Luces
Ninth grader Ryan Tedesco has his head shaved for charity. Photo by David Luces
Megan Mcvetty smiles as her hair is cut for charity. Photo by David Luces
Young Jack and Charlie Scott get their hair cut. Photo by David Luces
Eric Scott gets his head shaved. Photo by David Luces
Jack Scott, Charlie Scott and Eric Scott all get their heads shaved. Photo by David Luces
Daniel Mankes, Drew Yeager and Glenn Fitze all get their heads shaved. Photo by David Luces
Special education teachers Glenn Fitze and Drew Yeager get their heads shaved. Photo by David Luces
By David Luces
Students, teachers and parents in Commack recently went bald for a cause.
For the 10th year running, members of the Commack School District and surrounding community gathered at the high school March 1 to shave their heads in support of childhood cancer research. Over 100 people participated to raise money for the St. Baldrick’s Foundation, a not-for-profit whose goal is to raise funds to find cures for childhood cancer.
In the past nine years the district has held the event, Commack has raised over $650,000. This year the district raised close to $45,000, with some teams donating well over $10,000.
The annual event is organized by Commack High School teachers Lee Tunick, Bill Scaduto and Dan Revera. Since its inception, close to 1,000 people have shaved their heads in solidarity to those suffering childhood cancer. Hairdressing students from Eastern Suffolk BOCES donated their time to cut the participants hair.
The idea for the fundraiser came about through a cancer awareness club that Revera and Scaduto ran at the high school for quite some time.
“Bill Scaduto and myself have been working in this building for 20 years,” said Revera. At that time St. Baldrick’s didn’t exist as we know it today. When we first found out about St. Baldrick’s, we would go to a school in Northport and a colleague of mine thought why don’t we host our own event here [at the high school].”
Now with the event in its 10th year, Revera said it is great to see Commack School District students and community come out to support this.
“One of the main influx of people [that come here] are the elementary students,” the high school teacher said. “Anything that we can do to generate [money] to help these kids who are going through this is great.” Revera added that the students that came to the event have shown bravery, have stood up for what’s right and are dedicated to a good cause.
“That’s why we are here,” he said. “Just the thought of a family going through something like this and dealing with their child battling cancer — I can’t even imagine. If providing one day where we can support them and try to help however we can, it’s the least we can do.”
Body tissue belonging to James Nielsen, 17, who died in July, could prove helpful for researchers of aggressive, rare form of cancer
James Nielsen, 17, of Port Jefferson Station, while on a family trip in Tennessee to see the solar eclipse in 2017, just weeks before he and his family learned he had cancer. Photo from Steven Nielsen
Making sense of loss is never easy, though a Port Jefferson Station family has drawn strength from their 17-year-old son’s bravery and desire to help others, even in his last days.
“Bad things happen to people and this just happened to happen to me, and we’re just going to do the best we can with it,” James Nielsen told his father Steven when they learned the 17-year-old had been diagnosed with a form of cancer so rare and devastating only one documented case of survival exists.
James Nielsen, 17, of Port Jefferson Station, after becoming an Eagle Scout. Photo from Steven Nielsen
The Comsewogue High School student was diagnosed with NUT midline carcinoma in December 2017, an aggressive form of cancer akin to a death sentence. Despite the devastating prognosis, the Eagle Scout from Troop 454 engaged in rare, barely fleeting moments of despair, according to his parents, even spending the day he died — July 16, 2018 — playing UNO card games and watching the World Cup.
James’ form of cancer is characterized by tumors that form in bones or soft tissue. No effective treatment for NMC exists, there are no guidelines, and current approaches to treatment are based on discussions among a few oncologists who each have had a single experience treating this disease, according to the writings of Dr. Christopher French, a pathologist researching NMC at Dana-Farber/Harvard Cancer Center in Boston, who also advised James’ family after his diagnosis.
“The cancer type that he had is extremely rare and he has a yet even rarer variant of that cancer,” French said in a phone interview. “His tumor was really quite unique. It had a different gene, a variant that is extremely uncommon.”
In late August 2017, upon arriving at cross-country team practice at Comsewogue, James’ mother Jean Nielsen said she noticed a sizable lump on her son’s leg. She said he brushed off her concern, went to practice, and even ran an additional mile when he got home. That night, she had her husband Steven Nielsen examine James’ leg. He said it looked swollen but not necessarily alarming, but when he touched the tumor it was rock solid. A trip that same night to a walk-in medical clinic led to a visit to Stony Brook University Hospital, and by that weekend the family knew their oldest child of four had cancer.
Initially doctors believed he had Ewing’s sarcoma, a diagnosis with a far higher survival rate and clearer treatment options than NMC. In the early stages of his battle, James’ mother said she wrote “treatable and curable” on the first page of a journal the family kept pertaining to his illness. James began what was expected to be a 10-week cycle of chemotherapy, but by the second week of October 2017, it became clear the tumor wasn’t responding to treatment, and immediate surgery would be necessary.
At about 10 p.m. Oct. 12, 2017, just six hours before he was scheduled to head to Manhattan for surgery at Memorial Sloan Kettering Cancer Center, James’ surgeon called and informed his parents there was a possibility he would need to remove their son’s entire leg, and not just portions of the thigh muscle and femur as initially expected.
“I’ll never forget, he looked at us, he sat silent for a moment, and he goes, ‘OK — we’ll do what we have to do,’” James’ father recalled. “And then it was pretty much, ‘Good night.’”
During hour 17 of a 20-hour surgery, the Nielsens were finally informed James would be able to keep his leg.
A positive outlook is often cited as essential in situations like James’, and for the Nielsens positivity flowed on a two-way street.
James Nielsen rides around Manhattan on Thanksgiving night 2017 after undergoing a round of chemotherapy. Photo from Steven Nielsen
“I guess we’ve always just kind of been in the place like, ‘It doesn’t help’ — letting your head spin and certainly getting overwhelmed by emotion — you have to kind of keep everything together for him,” Steven Nielsen said. “He made us so strong. We made him strong, but he led the way.”
Being able to salvage his leg was a small, yet short-lived victory. By December, doctors were finally able to pinpoint his diagnosis. Staring down a cancer with such long odds of survival precipitated an unusual response from the Nielsens — a trip to Disney World.
“We didn’t let it control us, we controlled it,” the father said. Self-pity was never in James’ vernacular. “We were never naive about the possibilities of what could happen, but we also, all of us, really felt that it wasn’t worth putting your energy there. Put energy toward your cure. And so we lived life that way.”
The family dedicated their son’s last months to embracing life, spending Thanksgiving evening perusing Manhattan after an eight-hour round of chemo, looking at stores on Madison Avenue, a night his father remembered as “magical.” They visited a ranch in upstate New York just weeks before his death, one of James’ favorite places to vacation. They went to the beach.
While their focus was getting the most of their time remaining, James’ parents were far from ready to give up the fight. Feeling like their experience at Memorial Sloan Kettering left something to be desired, Steven Nielsen did some research that led him to French. James participated in some clinical trials and spent time at the Boston facility, where he and his father even managed to find time to explore the city and visit colleges with notable pharmacy programs, a field in which James had expressed a future interest.
The father’s dogged pursuit of answers for his son led French to mistakenly call him “doctor” during one of their numerous correspondence.
“He wrote in a way that made me think that he knew quite a bit about medicine, I just assumed he was a physician,” French said, laughing. Both Nielsens are teachers in the Comsewogue district.
French is hoping to soon be provided with donated tissue from James for the purpose of research, one of the teen’s dying wishes. His will be the first cancer cell line, which are living cancer cells used for research, with NMC that French will have been able to get his hands on, an essential gift if there’s any hope for untangling the mysteries of the cancer form.
“The tissue that he donated at his autopsy for research was priceless, and potentially a very valuable tool to perform research with,” French said. “He was just a sweet individual. It tore my heart out when I met him very briefly … It was quite riveting to meet him just sort of knowing the truth, that this was likely to not go well.”
For James the decision to donate tissue for research was reflexive and required about two minutes of thought, according to his parents. The teen was known for reusing Dixie cups and napkins because of his aversion to creating waste.
The Nielsen family goes pumpkin picking shortly before he underwent surgery in Oct. 2017 to remove a tumor from his right leg. Photo from Steven Nielsen
“For him it was just what you do — he didn’t think it was a big deal,” his mother said. “What we look to as heroic or whatever is not really that heroic. Sometimes unassuming people are the most heroic, not people who are very vociferous.”
She said the family can take some comfort in knowing there’s a possibility James’ struggles could lead to a better future for someone else.
“I think if you believe everyone has a purpose, you’d like to think such a horrible result would end with something purposeful, like contributing toward the cure for other people,” the father said. “For us to have him taken away, you hope that that’s the reason.”
The Nielsens expressed gratitude for the support and well wishes they’ve received from the community. Some of James’ classmates have taken up fundraising efforts to get a memorial built in downtown Port Jefferson. Members of the school’s marching band wore pins honoring their fallen peer at the homecoming football game this month. Still, his parents stressed James was not interested in pity or ritualistic gestures of remembrance.
“He was very kind, very sweet, very familial — old kind of qualities that aren’t maybe appreciated as much these days,” his mom said when asked how she hoped he’d be remembered. “He was very selfless.”
To donate to aid in NMC research visit https://www.myjimmyfundpage.org/give/nmcregistryfund.
In Hawaii, numerous small earthquakes caused parts of Big Island to shake. Geologists, who monitor the islands regularly, warned of a pending volcanic eruption. They were right, clearing people away from lava flows.
How did they know?
It’s a combination of history and science. Researchers in the area point to specific signs that are reflections of patterns that have developed in past years. The small earthquakes, like the feel of the ground trembling as a herd of elephants is approaching in the Serengeti, suggest the movement of magma underneath the ground.
Higher volumes of lava flows could come later on, as in 1955 and 1960, say USGS scientists in the archipelago.
The science involves regular monitoring of events, looking for evidence of what’s going on below the surface. “Hopefully we’ll get smart enough that we can see [tremors] coming or at least be able to use that as a proxy for having people on the ground watching these things,” Tina Neal, scientist-in-charge at USGS Hawaiian Volcano Observatory, explained to KHON2 News in Honolulu.
People look for signs in everything they do, hoping to learn from history and to use whatever evidence is
available to make predictions and react accordingly.
Your doctor does it during your annual physical, monitoring your blood chemistry, checking your heart and lungs, and asking basic questions about your lifestyle.
Scientists around Long Island are involved in a broad range of studies. Geneticists, for example, try to see what the sequence of base pairs might mean for you. Their information, like the data the geologists gather in Hawaii, doesn’t indicate exactly what will happen and when, but it can suggest developments that might affect you.
Cancer researchers at Cold Spring Harbor Laboratory and Stony Brook University are using tools like the gene editing system called CRISPR to see how changing the genetic code affects the course of development or the pathway for a disease. Gene editing can help localize the regions responsible for the equivalent of destructive events in our own bodies, showing where they are and what sequences cause progression.
Scientists, often working six or seven days a week, push the frontiers of our ability to make sense of
whatever signs they collect. Once they gather that information, they can use it to help create more accurate diagnoses and to develop therapies that have individualized benefits.
Indeed, not all breast cancers are the same, which means that not all treatments will have the same effect. Some cancers will respond to one type of therapy, while others will barely react to the same treatment.
Fundamental, or basic, research is critical to the understanding of translational challenges like treating
Alzheimer’s patients or curing potentially deadly fungal infections.
Indeed, most scientists who “discover” a treatment will recognize the seminal studies that helped them finish a job started years — and in some cases decades — before they developed cures. Treatments often start long before the clinical stages, when scientists want to know how or why something happens. The pursuit of knowledge for its own sake can lead to unexpected and important benefits.
Outside the realm of medicine, researchers on Long Island are working on areas like understanding the climate and weather, and the effect on energy production.
Numerous scientists at SBU and Brookhaven National Laboratory study the climate, hoping to understand how one of the most problematic parts of predicting the weather — clouds — affects what could happen tomorrow or in the next decade.
The research all these scientists do helps us live longer and better lives, offering us early warnings of
developing possibilities.
Scientists not only interpret what the signs tell us, but can also help us figure out the right signs to study.
Prev
