abcdeW e d n e s d a y , D e c e m b e r 7 , 2 0 1 6

Iran’s president warned ofunspecified consequencesif Donald Trump tried to tearup last year’s nuclear agree-ment. A3.

The state’s chief medicalexaminer enacted newrules on how forensic pa-thologists can retract theirfindings on the cause ofdeath in cases. B1.

Twenty-seven percent ofmedical school studentsare afflicted with depres-sion, according to a paper inthe Journal of the AmericanMedical Association. B1.

The Grammy nominationswere announced, with Be-yoncé leading the pack withnine nods. B12.

Wednesday:Morning rain.High 43-48. Low 33-38.

Thursday:Windy and cold.High 42-47. Low 28-33.

High tide: 4:29 a.m., 4:46p.m.

Sunrise: 7:00 Sunset: 4:11

Complete report, B9

Wetbehind the ears

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Red Soxget anotherace pitcher

Boston acquired ChrisSale (top) from the Chi-cagoWhite Sox for apackage of prospectsthat includes pitcher Mi-chael Kopech (bottom,left) and infielder YoanMoncada. The Red Soxalso got a reliever in atrade and signed a free-agent first baseman. D1.

The opulent, gold-leafed ballroomwas packed. Leading pediatric on-cologists had come from aroundthe world to the conference inGrand Rapids, Mich., along withdozens of parents of desperatelyill children. Officials at the federal

Food and Drug Administration watched remote-ly on a live video feed.

All eyes were on the stage and Dr. Giselle Shol-ler.

On the screen behind her as she spoke thatday in May 2014 was a photograph of Will Laceyholding up a brown medicine bottle as thoughgiving a toast. It had been shot four years earlier,soon after the boy had begun taking DFMO, thedrug Sholler was testing on children with neuro-blastoma.

Will was 5 years old then. He was 9 now, andvery much alive. On DFMO, Will’s cancer hadsteadily diminished until it was no longer detect-able.

Sholler hesitated to call him cured. But shedidn’t have another word for what had happenedto Will, who no longer needed DFMO or any oth-er cancer treatment.

WILL, Page A6

STORY BY BILLY BAKERILLUSTRATIONS BY TONIA COWANGLOBE STAFF

The new drug had provedto bemiraculously effectiveinWill and others, butchildren in need wouldoutrun supplies inamatter of days. Wherecould the doctor and herpatients turn?

The power of willA narrative in five parts.

Chapter 4

By Brian MacQuarrieGLOBE STAFF

WESTFIELD — When Rob-ert Greenleaf closes his eyes, hestill sees the red circles paintedon the wings of Japanese war-planes headed toward nearbyPearl Harbor.

He was 19 then, a gunner’smate third class in the Navy.Suddenly, he was at war,frantically loading Browning.50-caliber machine guns.

“When we saw the red meat-balls on the wings,” he recalled,“we realized who they were.”

Greenleaf, now 94, is amonga dwindling number of veter-ans who were on the Hawaiianisland of Oahu on Dec. 7, 1941,when a Japanese surprise at-tack killed more than 2,400people, and propelled the Unit-ed States into World War II.

Now, 75 years later, the im-pact of that day — ingrained inthe psyche of earlier genera-tions — is softened by the pass-ing decades and the more re-cent tragedy of Sept. 11, 2001.

“I asked a girl one day at thePEARL HARBOR, Page A10

An infamous date fades,75 years after attackButday is vivid forPearlHarbor survivors

JONATHAN WIGGS/GLOBE STAFF

Robert Greenleaf was a gunner’s mate third class in the Navy whenPearl Harbor was attacked by Japan 75 years ago today.

By Victoria McGraneGLOBE STAFF

WASHINGTON — Within days of DonaldTrump’s election, left-leaning donors were ask-ing Erica Payne: What’s the plan for Granny?

You may remember Granny from a viral tele-vision ad in 2011, attacking Wisconsin Republi-can Paul Ryan’s plan to partially privatize Medi-care: a dark-suited man dumping an elderlywoman, pink slippers and all, off the edge of acliff, to the strains of “America the Beautiful.”

Payne’s group, the liberal Agenda Project,produced a sequel when former Massachusettsgovernor Mitt Romney picked Ryan to be hispresidential running mate in 2012. “ThrowingGranny off the cliff” became part of the vocabu-lary of the Medicare reform fight.

Now, a new fight over the popular entitle-ment program is shaping up to be an early battlebetween Democrats on one side and Trump andthe Republicans on the other. Battered Demo-crats and their allies, in need of political reinvig-oration after Trump and Republicans stunnedthem in last month’s elections, are readying theirpowerful, emotional lobbying efforts to stave offchanges in Medicare.

“You’ll be seeing a lot of Granny,” Payne saidin an interview, adding that she’s been in touchwith donors and the actress who played Grannyin the previous ads, though no media buy hasbeen placed. “Paul Ryan is not going to be able toexecute his plans for Medicare without Grannyraising a big hoopla about it.”

Advocacy groups including AARP, the power-MEDICARE, Page A10

By Meghan E. IronsGLOBE STAFF

Boston homeowners are likely to see theirproperty tax bills shrink by the end of the yearunder a proposal that would expand the city’sresidential exemption for the first time in 17years.

The measure is part of a push to ease the fi-nancial burden on the city’s middle-class fami-lies, who are strained by stagnated wages andthe increasing cost of living, said DavidSweeney, the city’s chief financial officer.

The mayor’s office cited the strong localeconomy, including rising property values, asthe reason the city has a financial cushion to cutproperty taxes.

The proposal is twofold: It would reduce theproperty tax bill for single-family, owner-occu-pied homes by an average of $299 — from$3,533 to $3,234. It would also increase the res-idential exemption to 35 percent for taxpayerswho make their homes their principal resi-dence.

The average 2017 property tax bill for resi-dents in single-family homes will be the lowestsince 2011, Sweeney said.

Mayor Martin J. Walsh, who faces a reelec-TAXES, Page A11

Democratsbracingfor fight onMedicareAdvocacy groups joinlobbying effort to preserveentitlement program

Walsh pushesplan to lowerproperty taxesSays rising values justifya bigger residential break

By Dugan ArnettGLOBE STAFF

As electronic screens have becomeincreasingly prevalent in households,parents have scrambled to imposelimits on the amount of time theirchildren spend viewing them.

What parents haven’t always doneis apply those limits to themselves.

In a survey released Tuesday bythe Common Sense Media group andNorthwestern University’s Center onMedia and Human Development,parents reported spending more thannine hours a day in front of a screenof some kind, with most of it — 7hours and 43 minutes — unrelated to

their job.The study, which included nearly

1,800 parents of children ages 8 to18, represented something of a novel-ty in the area of technology research:an in-depth look at how often par-ents, and not their children, rely up-on media.

What, exactly, has parents staringat screens with such regularity?

San Francisco-based psychologistJim Taylor says the same aspects ofthe online world that draw childrenalso draw their parents.

“Adults,” he says, “are as vulnera-ble as children to FOMO,” or the fear

SCREENS, Page A11

Left to their own devices, parents often overindulge

Parents reportedspending morethan nine hoursa day in frontof a screen.

FOTOLIA

A6 The Region T h e B o s t o n G l o b e W E D N E S D A Y, D E C E M B E R 7 , 2 0 1 6

Two other children enrolled in her trialhad similarly incredible results. The newshad electrified the global community of par-ents of children afflicted by this virulentform of cancer, and Will had become an iconthey looked to. Many checked his father Pat’sblog regularly for updates on the boy’s condi-tion.

But the study as a whole was not all mi-raculous. The other 14 children on the trialhad all died.

It had been a uniquely difficult time inSholler’s clinic. In one room, she would seeWill Lacey or one of the other thriving pa-tients. Just down the hall would be childrentaking the same drug, still choked by cancer.DFMO did everything for a small number ofpatients and nothing for many more. Then

�WILLContinued from Page A1

one day she asked herself if she might havebeen going about it wrong.

Instead of using the drug to fight relapsedneuroblastoma, maybe DFMO’s real strengthwas in preventing children from relapsing inthe first place. In experiments in her lab, firstin petri dishes and then in mice, the ideaworked incredibly well. The cancer cellsstruggled to reproduce.

So she changed her line of attack, and inJune 2012, she started a new, larger trial, forchildren in remission, using DFMO to try tokeep them there. There would be 80 childrendivided into two groups — the larger onemade up of those who had gone through tra-ditional treatment and had not yet relapsedand the other of children who had relapsedonce but whose cancers had been againbrought into remission. Each patient wouldtake DFMO for two years to try to prevent

the cancer’s return.Sholler had, by that time, moved away

from Vermont and landed at Helen DeVosChildren’s Hospital in Grand Rapids. There,with more resources to carry out her mis-sion, she had thrown herself into building anew clinic and lab. Pat had become her emis-sary and proselyte, crisscrossing the country,speaking at conferences and neuroblastomagatherings, raising money, and spreading thegospel of DFMO.

When the first 10 patients in the maingroup all reached the one-year mark still inremission, Sholler had moved to double thesize of the study to 160 children, and Patraised the money to make it happen. Aftertwo years, the numbers seemed even moreconvincing, and now, on the stage in the ball-room, she was ready to tell the world for thefirst time.

Slide by slide, she told the story of DFMO,arriving finally at her best slide, the one shecould not wait to get to. It showed results forthe 39 patients in the main group who hadcompleted at least a full year on DFMO. Sta-tistically, she said, a quarter of them or moreshould have relapsed by then.

To date, she told the crowd, we’ve had justone.

A charge went through the room. Pat Lac-ey could feel it from his seat in the back. Itwas what he had been hoping for, a jolt of en-thusiasm to help him and Sholler achievetheir goal of getting DFMO to every childwith neuroblastoma.

In the audience, a man named Jeff Jacobwas having different ideas.

Jacob was the chief executive ofCancer Prevention Pharmaceuti-cals, the company that suppliedthe DFMO for Sholler’s studies.For her first study, CPP had feltlike a savior — agreeing to donatethe drug in exchange for her data.

But when the second study was beingplanned, Jacob told Sholler that the deal hadto change and presented her with a $300,000bill. The start of the trial was delayed whilePat raised the money. A child Pat knew, a

770 DAYS LATERJUNE 22, 2010

770 Days.

That is how much time passed fromwhen I first heard DFMO mentionedby Neil after an AACR meeting untila CT was performed on my sonshowing that his tumor has shrunkfrom 20 days of taking DFMO as asingle agent.

A lot of things needed to happen inthat time frame: Neil needed todrive this collaboration, Dr.Bachmann and Dr. Sholler needed towork together, the drug companyneeded to be on board, preclinicalwork done, a combination drugidentified, a trial written, a trialsubmitted to the IRB’s for approval,and money needed to magicallyappear to pay for it all. Funding thatyour support helped to create.

This is absolutely mind blowing.

IMMUTABLEJUNE 30, 2013

Will started getting sick back on SaturdayJune 8th — last night marked three weeks.

He has asked some very difficult questions.

He has made some rather startlingstatements to me in their depth andmaturity that have dropped me to myproverbial knees.

His feelings about cancer — and what it hasdone to him — are raw and very powerful.

I don’t have answers to many of hisquestions. I explain that I am just asbuffaloed as to why HE finds himselfcontinually facing these challenges.

But I then go on to explain that the ‘why’doesn’t really matter.

I tell him simply and firmly that life is hardand ‘unfair’ and sometimes we don’t havethe answers.

WINDOWSDEC. 2, 2014

Will spends an inordinate amount of time in the basementshooting pucks. Now, while he loves hockey, he had not playedout in a game as a player since he was in third grade. After . . .having missed so much time last year . . . I was curious to seehow he would do. After a few games he started to getacclimated . . . and started to gain more confidence. When hefinally got his first goal this season I was so happy for himbecause I know how hard he worked to get back out there.

DISPATCHES FROMANIGHTMAREPat Lacey created a blog and wrote almost daily about his sonWill’s battle with cancer

W E D N E S D A Y, D E C E M B E R 7 , 2 0 1 6 T h e B o s t o n G l o b e The Region A7

young boy in Massachusetts, relapsed justbefore they could get it underway.

After that, Pat could never look at Jacobthe same way, but the relationship had re-mained functional out of necessity — CPPhad locked up the only supply of DFMO inthe United States.

The company was facing financial con-straints of its own. Its national trial to findout if DFMO prevented colon cancer polypsfrom regrowing was showing promise butrunning long and burning through money.Jacob and other senior staff had stopped tak-ing salaries. If they could get FDA approvalto treat cancer with the drug, the windfallcould be huge. But they were still years away.

Now, having heard Sholler detail her re-markable results, Jacob wondered if theremight be a faster way to get DFMO throughthe FDA.

The phone rang. Genevieve Bergendahl,Sholler’s program manager, took another callfrom another anxious parent. For more thana year, parents had been hearing word ofDFMO’s success through the blogs and net-works they followed. But now, in the dayssince Sholler detailed her results at the con-ference, they called at all hours, desperate fortheir children to have the drug.

Because it was experimental, there wasonly one way to get it — through Sholler’sclinical trial. Parents were calling months be-fore their children could qualify for the study,desperate to book spots before it filled up.

Sholler wanted to get the drug to as manychildren as she could. She’d won regulatoryOK to expand, and hospitals around thecountry were lining up to participate. Foreach new hospital that joined their network,Bergendahl made a mark on a map. Eachnew city felt like a victory.

Bergendahl had been with Sholler sincethe beginning in Vermont. She’d had a rule atthe time against working with children withcancer. The emotional toll seemed too relent-less. She had changed her mind after meet-ing Sholler, and since then, they had been to-gether through every up and down. Bergen-dahl knew each patient in detail, down totheir favorite flavor of pudding.

On the phone with the parent now, Ber-gendahl spoke reassuringly.

We aren’t allowed to reserve spots this farin advance, she said. But there’s nothing toworry about on this end. We’ll have DFMOfor your child when she gets here.

Back in Braintree, both Laceydaughters were in school. Willwas finishing fourth grade.The dry-erase calendar in thekitchen was overflowing withhockey and dance and la-crosse dates.

And there were still medical checkups.Will went to local clinics for quarterly scans.Once a year, he and Pat flew to Grand Rap-ids, where Sholler gave the boy a full workup.

Each time, Will checked out fine.But Pat and Dina’s worry never went

away; they could never fully celebrate hiscancer disappearing while living under thefear that it would return.

A few months earlier, Will had startedvomiting and wouldn’t get better. Then, hecomplained of double vision. Pat had rushedhim to the hospital, and he and Dina feltthemselves in free fall when a scan showed aspot in Will’s brain.

There was an anguished wait and somecomplicated brain surgery. The spot turnedout not to be cancer but a hemorrhage, possi-bly caused by the years of caustic chemother-apy and radiation. Will would recover, butthere were more doctor visits and physicaltherapy.

Pat, meanwhile, was doing anything hecould to keep Sholler’s work moving forward.He was always on his phone, always in touchwith Sholler and the people who supportedher.

A few weeks after the conference, Pat sawa note from Jeff Jacob appear in his inbox,addressed to him and Sholler, congratulatingthem on the conference and the study. Hesaid he wanted to meet with Sholler to dis-cuss “a framework for moving forward.”

Pat wondered: What could that mean?A short time later, Sholler called Pat, fum-

ing. She had talked to Jacob.He wants us to close our trial, she said.

What Jacob told her was that CPP wouldcontinue to supply the drug for 80 patientsbut not necessarily Sholler’s planned expan-sion to 160. The sole focus now, he said,should be talking to the FDA about the fast-est way to win approval of DFMO. She andPat both knew what that would be — shut-ting down her current trial and launching aplacebo-controlled random trial.

That was the usual course in drug approv-als; half the patients receive the drug andhalf don’t. It was considered the only way toprove, without a doubt, that a drug works.And Sholler understood why Jacob wantedto fast-track FDA approval. It would allowdoctors everywhere to prescribe it, wideningthe market for CPP.

But in Sholler’s mind, for her patients,such a trial was out of the question. Childrenwould die.

Jacob had been sympathetic. “If I was aparent, I would do everything in my power toget my child treatment,” he would later say.“My position as CEO is to get a trial that theFDA would accept, which are not the trialsresearchers want to run or parents want tohear about.”

Sholler pushed back, but he was insistent,and it irked Sholler that Jacob suddenlyseemed to be treating her like an employee ofCPP, there to do the company’s bidding. Hergroup, after all, had created, written, admin-istered, and paid for the entire trial; all he’ddone was sell her the drug.

She thought he was wrong that only aconventional random trial would persuadethe FDA. She believed she had an idea theagency might accept: Instead of giving a pla-cebo to desperately ill children, she wouldcreate a control group using published dataon patients whose treatment had been iden-tical, except for DFMO.

Getting the drug to as many patients aspossible remained her only goal. Shewouldn’t let CPP reverse course now.

She dug in for a fight, but still she wor-ried. CPP was the only source of DFMO inthe country. If their relationship founderedthere was nowhere else to get it.

In early June, Jacob asked Sholler tojoin in a conference call with pro-spective CPP investors. She refused.Hospital lawyers preferred it thatway, but she also relished the oppor-tunity to send a signal: She did notwork for CPP.

Jacob was frustrated. In e-mails and con-ference calls through the summer, he andSholler argued over how to proceed. Po-sitions hardened; neither wouldbudge. By late July, with negotia-tions going nowhere, CPP informedSholler that it was working withanother prominent pediatric on-cologist for future trials.

Sholler felt cornered. Pat wasin a panic. They would hit 80 pa-tients in a few months. Afterthat, there would be nowherefor children to get DFMO. Anytrial that CPP tried to launchwould take years to get under-way.

She had no answer becauseshe thought there was no an-swer.

Then one day, she receiveda phone call out of the bluefrom an old friend who had awild idea.

Meryl Witmer had called justto check in.

She was a longtime supporter of

Sholler’s. Her son had managed to beat a re-lated form of cancer, but the experience hadleft her frustrated by the pace of pediatric re-search. She was the one who had, years earli-er, arranged the gathering in New Yorkwhere Sholler met Pat Lacey for the firsttime. She also happened to be a powerfulbusinesswoman who ran a hedge fund withher husband and was one of two women onthe board of Berkshire Hathaway.

It had been a year or so since they’d lasttalked, and Sholler told her everything. Wit-mer listened, then asked a question: If DF-MO is out of patent, can’t you just start yourown company to make the pills?

Outlandish as the idea seemed, it was onethat had occurred to Pat before. But he andSholler had dismissed it as too big an under-taking and one that couldn’t possibly be com-pleted in time.

Sholler dismissed the idea again, but overthe next few days the fight with CPP only es-calated. She now saw no other way. She e-mailed Witmer: You need to do this now!

That fall, the DFMO shipments from CPPto Sholler’s clinic stopped arriving. Her sup-plies were running low, and as her hospital’slawyers argued with CPP, a new worry creptin: Was CPP going to stop supplying DFMOeven for the 80 patients they agreed on? Patpounded out a livid e-mail, telling the com-pany they barely had enough DFMO to getthrough the next two months. “How is thispossible?” he wrote. “We are buying thedrug. . . . You are quite literally withholdinglifesaving medicine.”

He didn’t get an answer. But a short timelater he did get word that someone from CPPwould be in Boston and wanted to meet withhim.

Pat looked at his phone, checkedthe time, and drummed his fin-gers on the sleek modern table.It was a crisp day in October.He’d left his office in Boston’sSeaport a few minutes earlierto walk a few blocks to District

Hall, a new public “innovation” space.Pat had never heard of the man who was

coming to meet him. Dan Donovan was hisname, CPP’s chief business officer.

The meeting felt to Pat like an attempt totake the dispute out of Sholler’s hands, to gethim alone and see if he could be recruited tohelp convince Sholler to come to terms. Patwould keep his guard up.

A middle-aged man in a suit and a side-ways smile appeared before him.

They shook hands and Donovan sat, allfriendliness and small talk, like they were co-conspirators, Pat thought, the only levelheads in a house of crazies. They were goingto figure this thing out. Pat listened and nod-ded at the right times, smiled, until finally hetried to pin Donovan down. He wanted himto commit to at least sending the DFMO theyneeded for the original 80 patients.

Donovan leveled his gaze. If they wantedthat DFMO, Pat recalled him saying, Shollerhad to go.

A few days later, CPP sent one last smallshipment of the drug — they called it a good-faith gesture. The company made clear in ane-mail that would be all until the drug wasproved safe and effective. And they wantedanother oncologist “designated as a replace-ment for Sholler.”

Sholler wasn’t going anywhere. She askedBergendahl to run an inventory of the DFMOthey had remaining at the various test sites.She wanted to know how much they had left

and how long it would last, factoring in newchildren. She had no plans to refuse anyone.

Bergendahl called her with the answer:March 1.

A shiver of dread ran through Sholler. Shehung up and called Pat to tell him the news.The secret plan was now the only plan, andthe odds against them were sobering: MerylWitmer and Pat Lacey would need to start adrug company, manufacture pills from rawchemicals, and get regulatory approval togive it to children. It could easily take years.They had 106 days.

Series Editor: Steven Wilmsen. Billy Bakercan be reached at billy.baker@globe.com.Follow him on Twitter @billy_baker.

More onlineTo see this story online, with morephotos, illustrations, and an audioversion, go to bostonglobe.com

A LIFE IN SNAPSHOTS

Will waited for pizza at LynwoodCafe in Randolph in May 2012.

Will played goalie in a youthhockey game in November 2012.

LACEY FAMILY PHOTOS

Catherine, Will, and Evelyn onCape Cod in August 2012.