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Contributor: How federally funded research saved my son's sight — and his life — from a rare cancer

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Contributor: How federally funded research saved my son's sight — and his life — from a rare cancer

If you want to make this country great, imagine the strength of a nation whose children have been fought for and know they have been fought for.

Last month, my son reached two years in remission from a rare, malignant cancer that almost took his eye and his life. He is alive, well and enjoying 20/20 vision because of a groundbreaking treatment that was pioneered by National Institutes of Health researchers, among others, and funded by the government grants the Trump administration is blocking and threatening to cut. If the president continues on this course, children diagnosed during and after this administration will needlessly fare worse than those who came before.

My son Jack was diagnosed in 2022 with retinoblastoma, a malignant childhood cancer of the central nervous system that originates and grows in the eye. If left untreated, it typically migrates through the optic nerve to the brain, eventually metastasizing and taking the life of the child.

Because the cancer usually attacks children under the age of 3, its victims are often unable to report the symptoms of a mass blocking their vision until it’s too late to treat with procedures that can salvage the eye. That’s when enucleation — removal of the eye — is required.

This is why pediatricians developed standard screening for retinoblastoma starting at birth. This now-routine preventative care has enabled medical professionals to find and treat most cases without a loss of vision or life. Because of these developments and others, retinoblastoma has a very high survival rate in 21st century America.

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Jack’s was one of very few documented diagnoses with retinoblastoma after the age of 8. His oncologist suggested his tumor had been hiding in a dark corner of his retina for years, out of his vision and that of physicians; other doctors thought it had “self-arrested” or presented late and grew rapidly. We discovered it only because it burst from the impact of a belly flop at the neighborhood pool, spewing cancer cells in a constellation of poison floating inside his still-intact eyeball, visible to Jack as spots that didn’t go away.

It took weeks for doctors to nail down the diagnosis. When we walked out of that appointment on a day that was so windy I had to hold onto my dress, I put Jack in the car, turned the radio on for him, closed the passenger door and walked about 30 feet away to scream in the parking lot. “My baby!” I wailed through the phone to my mother.

It was an advanced-stage tumor, complicated by the release of cancer cells inside his eye. They could now attach and grow anywhere within — including the optic nerve, with its direct connection to his brain — if we didn’t act quickly. We might have just days before it was too late.

“We could remove his eye,” our oncologist offered at first, “and even that might not be enough.”

Medical researchers from universities and the National Institutes of Health rally near the Health and Human Services Department’s headquarters in Washington.

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(John McDonnell / Associated Press)

Then he explained that we could try to save his eye with a highly advanced procedure called intra-arterial chemotherapy, or IAC. It involves threading a catheter through the thigh’s femoral artery, behind the heart through the carotid artery and into the skull. An interventional radiologist, guided by MRI, releases the chemotherapy agent directly into the artery feeding the retina. This allows doctors to deliver more aggressive and targeted medicine to the diseased cells and limit damage to the healthy ones.

Our oncologist explained that IAC is still a very new technology but one with extraordinary promise whose benefits far outweighed the risks for Jack.

My son underwent six rounds of intra-arterial chemotherapy and seven rounds of intravitreal chemotherapy, in which the medicine is injected directly into the eye. He went under anesthesia 13 times in six months, required monthly breathing treatments that made him spit gray foam, and lost most of the brow and all the lashes around the affected eye. His list of drugs included ketamine, propofol, hydromorphone, melphalan, fentanyl, topotecan, pentamidine, albuterol, prednisolone and aldosterone. At one point, he needed epinephrine because he nearly went into cardiac arrest. Toward the end of his treatment, he received cryotherapy to kill the base of the tumor and woke up from surgery in so much pain that he gritted his teeth to the point of cracking one.

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At every turn, my family was reminded of our privilege — to live in a country that was scientifically advanced enough to have developed such miracle treatments, to live in a city (Denver) with such good hospitals, to have good health insurance through my husband’s employer. If we had lived without such access to care, in a country lacking our resources or just 15 years earlier, our story would have ended differently. Instead, nine months after his diagnosis, thanks to the advanced research our country has supported socially, academically and financially, my son’s cancer was in remission.

My family recently attended a gathering with other retinoblastoma survivors, from toddlers to adults who had conquered the disease decades earlier. As each survivor entered the conference, it became evident that this was once primarily a disease of blindness: The price of survival was generally a loss of sight and eyes. Some of the older survivors had facial abnormalities from radiation or enucleation. Some had canes or family members to guide them. When we told the group that Jack’s body, vision and dream of becoming a pilot were all still intact, many gasped in awe that the science had advanced so far.

But now the Trump administration’s lack of empathy threatens other children and families facing such horrific diagnoses. Continuing research on intra-arterial chemotherapy and other treatments at the University of Colorado’s Anschutz Medical Campus, where Jack was treated, is paid for by programs in the administration’s crosshairs. “These cuts to NIH funding jeopardize the foundation of our life-saving research,” a university spokeswoman told Chalkbeat Colorado. “Reduced research capacity means fewer scientific discoveries, job losses and delayed advancements on therapies and cures that could improve — and save — lives.”

I wonder whether our hospital will be able to continue offering groundbreaking treatments should Jack face a recurrence. And will the newly diagnosed have the same access to care that we did? What greatness can be celebrated when a mother fears she will lose her child’s access to lifesaving treatment?

My son’s recovery was a direct result of the greatness of our country and its past leaders, who had the foresight to pursue progress and excellence in science and refuse to accept losing children without a fight. Because of it, I believe my son will someday fly planes. And I can only hope the next child who faces a dire disease will get the same chance he did.

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Dayna Copeland is a writer and teacher in Colorado.

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Lithuania’s Peat Bogs Could Help the Climate and Defend the Border, Too

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Lithuania’s Peat Bogs Could Help the Climate and Defend the Border, Too

In a scrubby forest an hour outside the Lithuanian capital on a recent day this spring, excavators were digging ditches and tree harvesters were whirring in an effort to restore a waterlogged, mosquito-infested ecosystem that was drained in the Soviet era.

The reason is twofold: to help the climate and to defend the country from invasion.

The area was once a vast peat bog, and peat bogs are highly efficient at storing planet-warming carbon dioxide. They also happen to be very good at stopping tanks, because the spongy soil can’t support the weight of armored vehicles. The tanks get stuck and sink, often permanently.

Tomas Godliauskas, the Lithuanian vice minister of defense, said the bogs would form “an integral defensive line” when combined with other military tactics. The project also has the advantage of being relatively cheap compared with other measures like tank ditches and minefields, he added.

Lithuania isn’t the only European Union country using bogs to deter a Russian invasion. Latvia and Finland, for example, are also seeking to restore bogs for both environmental and defense purposes. And Ukrainian bogs helped to delay Russian troops in a failed push toward Kyiv in 2022.

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Richard Hooker, a former director at the National Security Council who’s now a senior fellow at the Atlantic Council, a research organization based in Washington that focuses on international security, said peatland restoration could play an important role in Lithuania’s defense against an invasion from the east.

He noted that only one major highway runs from Minsk, in Byelorussia, to the Lithuanian capital, Vilnius, and that the Russian Army is heavily mechanized, without the kind of light infantry units that the U.S. Army has. That means restored, impassible peat bogs would force invading troops onto roads and trails, where they would be more vulnerable.

“The idea that you can use natural obstacles to tie in with man-made obstacles to slow down an attacker is an excellent one,” Mr. Hooker said. “A lot more could be done than has been done, but the early signs anyway are promising.”

The hazards of the bogs were illustrated in March last year, when a 70-ton M88 armored recovery vehicle from the U.S. Army sank during a training exercise near Pabrade, a city in eastern Lithuania near the border with Belarus. Four crew members died.

The bog restoration project is part of Lithuania’s total defense doctrine, a security strategy mobilizing the military, civilian and private sectors to be prepared in case of Russian aggression. The country is looking to restore 6,000 hectares of peatlands, Mr. Godliauskas said.

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But it’s about more than just defending the border. It’s also about carbon capture.

Peat bogs form when oxygen-poor conditions in wetlands prevent bacteria and fungi from fully breaking down organic matter like plants and dead animals. In Lithuania, some of the resulting peat was extracted by the Soviet authorities to burn in power plants and to expand agriculture.

The restoration effort is a priority across multiple agencies in the government, said Aira Paliukenaite, Lithuania’s vice minister of the environment. The ministry is planning for restoration to continue for the next 30 years as a part of its policy of aligning with the European Union’s Nature Restoration Law.

That measure requires every country in the bloc to implement a plan, with targets, to mitigate carbon emissions and restore biodiversity and habitats in the coming decades.

Lithuania appears to be in a good starting position. The country still has large quantities of undisturbed peat underground. By rewetting it, officials said they could transform the land back into a what’s known as a carbon sink, or storage system, because peat can lock away carbon for much longer than forests can.

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It’s not a simple process, though. The technical planning and site preparation can take years. The projects are still in the early stages, especially those along the border, but they are starting to work with nongovernmental groups like the Foundation for Peatland Restoration and Conservation.

While some in the country are skeptical about the restoration process and its efficacy, others are welcoming the plan.

Albertas Lakstauskas, 52, a teacher and politician, has lived his whole life in Zasliai, a small town near one of the foundation’s projects, the restoration of about 150 acres of drained land where peat was extracted to supply energy to the Soviet Union.

Mr. Lakstauskas said he, like some others in the town, was doubtful that peat bogs alone could stop a Russian invasion, but he said he thought supporting the environment was a matter of national pride.

“If we can do some things to do better, I think that’s a good opportunity,” he said. “And I choose to participate.”

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Hantavirus strikes a cruise ship, Californians at risk: Is this the start of something much worse?

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Hantavirus strikes a cruise ship, Californians at risk: Is this the start of something much worse?

The voyage was marketed for explorers eager to venture to “the edges of the map,” from Antarctica to some of the most remote islands in the world.

It would be a tantalizing trip for tourists with an appetite for adventure — less about trips to the spa and lounging by the pool than a chance to see landscapes few humans have ever laid eyes upon.

But this call of the wild was ultimately among the factors that turned the MV Hondius into the epicenter of the first-ever deadly outbreak of hantavirus aboard a modern cruise ship. Eleven cases have been linked to the outbreak so far. Three people are dead, and two others are in intensive care.

The incident — with a few uncomfortable echoes of the onset of the COVID-19 pandemic — has sparked concerns and questions. Chief among them: Was this a freak occurrence, or a sign of things to come?

“I think it’s both,” said Dr. Peter Chin-Hong, an infectious diseases expert at UC San Francisco.

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Hantavirus had previously been an obscure illness. Typically spread through exposure to infected rodents’ urine and droppings, it’s notoriously difficult to diagnose and has no specified antiviral treatment. It was definitively identified relatively recently, in a field rodent near the Hantan River in South Korea in 1978, and finally explained the mystery cause of the “Korean hemorrhagic fever” that infected thousands of United Nations troops during the Korean War.

Though rare, the disease has drawn attention in the U.S. over the decades due to its incredibly high case-fatality rate: up to 50% among the strains that circulate in the Americas.

Western Hemisphere hantavirus strains are so deadly because they can attack the lungs and make them leak. The strains that circulate in Asia and Europe — where hantavirus is more common, and generally less deadly — attack the kidneys.

Those who are severely ill can only be treated by putting them on life-support machines that directly add oxygen to their blood.

Despite its severity, the overall impact of the disease in the Americas has remained muted for two main reasons. First, most strains of hantavirus do not spread directly from person to person. And second, many people will not come into contact with rodents carrying the virus during their daily lives.

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Excursions that attract people like those aboard the MV Hondius, however, blur the second line. Launched in 2019, the ice-strengthened vessel offered passengers opportunities for “maximum contact with the nature and wildlife you traveled so far to see,” according to its operator, Oceanwide Expeditions.

“The broader pattern is definitely not random,” Chin-Hong said, “which is more expedition tourism visiting remote areas.” Climate change, he added, is also increasing the range of certain infectious diseases.

“The hantavirus in the cruise ship is unprecedented, and reflects kind of like a perfect storm of the expedition cruise through a remote area, environmental exposure potentially during a short excursion, and the hantavirus — this particular Andes virus — being capable of going from person to person,” he said.

The Andes virus, which circulates in Argentina and Chile and is mainly spread among the long-tailed pygmy rice rat, is the only hantavirus strain known to be able to transmit from human to human.

Such inter-person spread occurred previously in a deadly outbreak in Argentina. From November 2018 through February 2019, the Andes virus infected 34 people there, killing 11, according to a study in the New England Journal of Medicine.

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There were 149 passengers and staff aboard the MV Hondius when the ship publicly disclosed that three of its passengers had died. Of the 18 U.S. citizens on the ship, one passenger initially tested positive for hantavirus overseas but also got a negative test result; a follow-up test is now being done in the U.S., and results are expected in a day or so, Dr. David Fitter, incident manager for the Centers for Disease Control and Prevention’s hantavirus response, told reporters in a briefing Wednesday.

That patient, who is not ill, is being monitored at a biocontainment unit at the University of Nebraska Medical Center.

Five California residents have been potentially exposed to the virus — four aboard the cruise ship, and the fifth while on a plane with an infected person in South Africa. All five are asymptomatic and appear healthy, the California Department of Public Health said Wednesday.

Most infected people actually don’t seem to spread the Andes virus, Chin-Hong said. But some do end up being “superspreaders,” infecting others at exceptional rates.

That’s what happened in 2018-19. A single person got the Andes virus from a rodent, and the outbreak was spread mainly by three sick people who attended crowded social events, the medical journal study said — including a birthday party and a wake for one of the hantavirus victims.

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In the case of the MV Hondius, the first person believed to have contracted the hantavirus was a man from the Netherlands who was possibly exposed to rodents while bird-watching prior to boarding the ship before it left for its transatlantic journey, according to authorities. He had spent the prior three months traveling through Argentina, Chile and Uruguay, the World Health Organization said. The man boarded the ship on April 1, developed symptoms on April 6 and died on board on April 11.

“At present, the thought is that it was an ornithologist who was visiting a dump, where many rare birds congregate, and was exposed to a rodent that was in the garbage dump,” said Dr. Elizabeth Hudson, regional physician chief of infectious diseases for Kaiser Permanente Southern California.

From there, she said, the realities of cruising at sea set the stage.

“Cruise ships are a perfect environment for the spread of infectious diseases, unfortunately,” Hudson said. “You have a population of people who are living together in a relatively small and confined space, with most folks spending a good part of their time indoors eating and socializing. This means that if there’s an infection that can spread easily from person to person, the very nature of the cruise ship allows this to happen more readily.”

It can also be difficult to isolate sick people aboard a cruise ship. The MV Hondius’ doctor fell ill with hantavirus, as did another crew member who was working as a guide. Among the symptoms people reported were gastrointestinal illness, fever, general malaise, pneumonia, fatigue, aches and respiratory symptoms.

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Extensive spread of the hantavirus outbreak is not expected, health experts say. Unlike COVID-19, the Andes virus is much harder to transmit from person to person.

In past outbreaks of the Andes virus, taking steps like isolating people who are sick — and asking those who aren’t sick but have been exposed to stay away from others — have brought outbreaks to an end.

It can take up to six weeks from the time a person has been exposed to the virus to the onset of illness. That “takes us to the 21st of June,” WHO Director-General Tedros Adhanom Ghebreyesus said at a news briefing Tuesday. “WHO’s recommendation is that they should be monitored actively at a specified quarantine facility or at home for 42 days from the last exposure.”

One Californian who was on the MV Hondius, but left the ship before the hantavirus outbreak was discovered, is back home in Santa Clara County and remains healthy. That person is being asked to limit trips outside the home during the 42-day period to see if they become ill, according to Dr. Erica Pan, director of the California Department of Public Health.

Another Californian, from Sacramento County, is also back at home after sitting within a couple of seats of a hantavirus-infected passenger who was briefly on a flight from South Africa to the Netherlands before being asked to deplane due to her illness. The Californian remains healthy, but is also being asked to limit activities with others.

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“They’re not to share a bed with someone else. … They shouldn’t attend social events, and they should not visit any crowded venues,” Pan said.

Two other Californians who were on board the MV Hondius are healthy and are being observed at the University of Nebraska Medical Center’s National Quarantine Unit, the only federally funded quarantine unit in the U.S. Thirteen others are also being observed there, while two are at Emory University in Atlanta.

The California Department of Public Health said it didn’t know when the Californians in Nebraska would return home.

California health officials Wednesday said that there was a fifth state resident who was potentially exposed to the hantavirus. That person left the cruise ship, returned briefly to California, then left for additional travel, all before the outbreak was announced.

That person, who remains healthy, is now in the remote Pitcairn Islands in the south Pacific Ocean — halfway between Peru and New Zealand.

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Despite concerns surrounding this latest outbreak, the Andes virus is considered a poor candidate to become the next pandemic. One thing that makes COVID spread so easily is that people can infect others even if they’re not personally experiencing symptoms.

With COVID, people could get sick just by breathing in aerosolized viral particles floating around and pushed across an entire room by an air conditioning vent.

With the Andes virus, by contrast, people probably need to be symptomatic to spread illness.

The 2018-19 Andes virus outbreak in Argentina also showed that close contact is needed for transmission, including “being seated very close” to the sick person, Chin-Hong said.

Those at highest risk of getting hantavirus from another human have “some direct exposure to bodily fluids,” Pan said.

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The first U.S. case of Andes virus actually occurred in January 2018, in a woman who had stayed in cabins and youth hostels in the Andes region of Argentina and Chile. She did not infect anyone else after her return despite taking two commercial flights in the U.S. when sick and before she was hospitalized in Delaware. She eventually recovered at home.

More morbidly, health experts note, the Andes virus is also too deadly for it to spread rapidly in a pandemic situation.

So why are we seeing this outbreak now?

Hantavirus appears to be expanding its range in Argentina. A report published in December noted that hantavirus’ range in that country was moving southward.

“This redistribution indicates either ecological shifts affecting rodent reservoir populations, increased human encroachment into previously untouched habitats, or improved surveillance detecting cases in areas with lower historical awareness,” said the report, published by the Biothreats Emergence, Analysis and Communications Network, or BEACON, based at Boston University’s Center on Emerging Infectious Diseases.

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From mid-June through early November, there were 23 confirmed cases in the country, with nine deaths. No human-to-human transmission was reported during that time period.

Another report suggested changing temperatures and rainfall also affected hantavirus transmission in Argentina.

Another well-documented example of that phenomenon is the rise of dengue viruses in Argentina, which are spread by mosquitoes. Rising temperatures are making the climate more suitable for transmission, one study suggested.

“Climate change has definitely had an impact on Argentina,” Chin-Hong said. “As it gets warmer, you potentially have more rats.”

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5 Great Stargazing Trains

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5 Great Stargazing Trains

Stargazing, it turns out, doesn’t have to be a stationary activity.

On railway lines around the world, from the Arctic Circle to New Zealand, a select set of evening train excursions take riders deep into dark-sky territory — some en route to remote station stops decked out with telescopes, others featuring onboard astronomers.

These five rail journeys (all of which are accessible) range from two- to three-hour desert outings to a hunt for the northern lights. One route even has a planetarium on rails. All promise a renewed appreciation of train travel — and of our pale blue dot’s improbable place in the cosmos.

Nevada

Any stargazing train worth its salt requires one thing: a dark sky. The Star Train resoundingly checks that box, traveling through a part of eastern Nevada that is one of the least-populated places in the lower 48.

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Run by the Nevada Northern Railway in partnership with nearby Great Basin National Park, the train departs the historic East Ely Depot, in Ely, Nev., early enough in the evening to catch the sunset over the Steptoe Valley, and then cruises through darkening skies to its destination: a remote corner of the desert appropriately called Star Flat, where a stargazing platform outfitted with telescopes awaits. There, riders disembark (equipped with red-light necklaces to help preserve their night vision) and take turns viewing the cosmos, guided by professional astronomers. (Last year’s onboard stargazing guides came from Caltech; in previous seasons, the National Park Service’s Dark Rangers, who specialize in night-sky activities, accompanied trips.)

The Star Train makes its two-and-a-half-hour round-trip journey most Friday evenings between mid-May and mid-September, and tickets ($65 for adults) can sell out almost a year in advance — though members of the Nevada Northern Railway Museum get early access. Alternatively, the railroad’s more frequent Sunset, Stars and Champagne excursions trade telescopes for desert sundowners but feature the same expert stargazers and the same Nevada night sky, which is often dark enough to see the Milky Way with the naked eye.

New Mexico

While plenty of heritage railroads across the United States offer twilight rides and nighttime excursions, at the moment there’s only one other dedicated, regularly scheduled stargazing train in North America besides the Star Train: the Stargazer, operated by Sky Railway, in Santa Fe, N.M.

Much like its Nevada counterpart, the Stargazer makes a two-and-a-half-hour round trip through dark-sky country, though in this case, the journey really is the destination, because it doesn’t make any stops. More of a rolling night-sky revue, the Stargazer features live music and professional astronomers who share their celestial knowledge and stories as the train rumbles into the vast Galisteo Basin south of Santa Fe. Sky Railway’s colorfully painted trains feature heated, enclosed passenger cars to stave off the evening chill and flatbed cars open to the night sky.

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Departing from the Santa Fe Depot downtown, the train normally runs once a month (adult tickets from $139, including a champagne welcome toast). Sky Railway also occasionally schedules excursions for special celestial events.

New Zealand

With its alpine landscapes and rugged coastline, New Zealand’s South Island is practically tailor-made for scenic daytime train journeys. But when night falls, the sparsely populated island — home to the Southern Hemisphere’s largest International Dark Sky Reserve — is heaven for stargazers, too.

This year, Great Journeys New Zealand, which operates the country’s tourist-centric long-distance trains, is offering a special nighttime run of the Coastal Pacific, whose route skirts the South Island’s northeastern coast. Timed to Matariki, the Maori new year, which is heralded by the first rising of the Pleiades star cluster, the eight-hour round trip from Christchurch is a cultural and astronomical celebration.

After the first half of a four-course onboard dinner, the train arrives in Kaikoura, in dark-sky country, for a guided stargazing stop with a range of telescopes — and fire pits and a night market. (The rain plan involves a virtual stargazing session at the local museum using virtual reality headsets.) Dinner resumes back on the train as it returns to Christchurch. This is a strictly limited engagement, on the rails for one night only: July 11, for 499 New Zealand dollars, about $295, per person.

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In the far northern reaches of Norway, inside the Arctic Circle, you can ride a train that chases another wonder of the night sky: the aurora borealis. Twice a week from October to March, the Northern Lights Train takes its riders into the dark polar night in pursuit of the aurora’s celestial light show.

From the remote town of Narvik, the train travels along the Ofoten Railway, the northernmost passenger rail line in Western Europe. The destination on this three-hour round-trip excursion (1,495 kroner, or about $160) is Katterat, a mountain village accessible only by rail and free of light pollution, making it an ideal place to spot the aurora. At the Katterat station, local guides and a campfire cookout await, as does a lavvu, the traditional tent used by the Sami people of northern Scandinavia, offering a respite from the cold (as well as hot drinks and an open fire for roasting sausages).

And aboard the train, the lights stay off, which means that on a clear night, you might even catch the northern lights on the way there and back.

Leave it to Japan to take the stargazing train to another level.

The High Rail 1375 train — so named because it runs along Japan’s highest-elevation railway line (the high point is 1,375 meters, or roughly 4,500 feet, above sea level) — is one of JR East’s deliberately unhurried Joyful Trains, which the railway company describes as “not only a means of transportation, but also a package of various pleasures.” This astronomy-themed train certainly packs plenty of joy into its two cars, with seat upholstery inspired by constellations, a snack bar, a souvenir shop and a planetarium car with a library of astronomy books and images of the night sky projected onto its domed ceiling.

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The train makes two daytime runs along the mountainous Koumi Line, taking a little over two hours to travel between Kobuchizawa (accessible by express train from Tokyo) and Komoro. But the main event is the High Rail Hoshizora (“Starry Sky”) evening trip, which includes an extended stop at Nobeyama Station (the highest in the country) for a guided stargazing session. A one-way ride on High Rail 1375, which runs on weekends and occasional weekdays, requires a seat reservation if you’re traveling on a Japan Rail pass, or a stand-alone ticket plus seat reservation (2,440 yen, or about $15). And remember to preorder a special “Starry Sky” bento box.


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