T H E P E D I AT R I C CA N C E R P R O G R A M AT T H E S I D N E Y K I M M E L C O M P R E H E N S I V E CA N C E R C E N T E R AT J O H N S H O P K I N S

J U ST S U P P O S EJ I M M Y ’S ST O RY

T H E S TO RY I S TO L D O F A

L I T T L E B OY W H O F I N D S T H O U S A N D S

O F S TA R F I S H WA S H E D U P O N T H E B E A C H

A F T E R A B I G S TO R M . H O W C O U L D H E S AV E

T H E M A L L? A F T E R A L L , W H AT D I F F E R E N C E

C O U L D O N E P E R S O N P O S S I B LY M A K E ?

H E R E A C H E D D O W N A N D T H R E W O N E

F I S H B A C K I N , T H E N A N OT H E R .

“ I M A D E A D I F F E R E N C E TO T H I S O N E ,

A N D T H I S O N E ,” H E S A I D .

J U S T S U P P O S E O U R C O M M U N I T Y S AW

C H I L D H O O D C A N C E R S T H E S A M E WAY.

H E R E I S A S TO RY O F T H E

D I F F E R E N C E I T C A N M A K E .

Every child has a story. And,every child should be promisedthe time to live out that story.

Cancer is one of the cruelest diseases,not only because of the physical painand suffering it causes, but because it threatens to rob children of their futures. We understand that when we cure a child of cancer, we not onlysave a life but a future filled with possibility and promise.

Cancer strikes more than 12,000children each year. While pediatriccancers are rare, they claim the lives ofmore children than any other disease.But, there is good news. We understandthe urgency that pediatric cancers

Dr. Small and Jimmy in 1996

demand. With world-class expertise, a culture of cross-disciplinary collaboration and a proven trackrecord of successfully bringing therapies from the laboratory topatients, our researchers are leadingthe field in developing treatments and cures for childhood cancer. Our researchers are the ones findingthe genes, studying what they do in terms of the biology of pediatriccancers, and developing the targetedtherapies to fight them.

In the following pages I share with youthe story of one of my patients. It is an example of the power of research.

A N OT E F R O M D R . D O N A L D S M A L LDirector o f Ped ia t r ic Onco logy

Ginny Berents withher newborn triplets

SMALL WONDERS

I T WA S AUG UST 1 9 9 6 and thethird birthday for the Berents triplets.It should have been an exciting timefor Jimmy Berents and his sisters, but he didn’t feel like celebrating. He sneaked away from the festivitiesand hid, curled up under the kitchentable. He was pale and clammy, andhad a fever. “It’s probably the flu,” the pediatrician told Jimmy’s motherby telephone.

A few days later, with no signs ofimprovement, his doctor admittedhim to the local community hospital.Jimmy’s parents Ginny and Ken recallthe doctor sitting at the nurses’ stationthroughout the night. Neither one ofthem could sleep. As they worried atJimmy’s bedside, hour after hour theysaw the doctor looking through booksand searching on the computer tryingdiligently to find an explanation forJimmy’s high fevers. The next day, the answer remained elusive, and he decided Jimmy should go to ateaching hospital near the family’shome in Virginia. Nine days and nine specialists later, Jimmy was senthome with a diagnosis of a viruscalled mononucleosis that seemed to fit some of his symptoms.

Days passed, and Jimmy had notimproved. In fact, he was gettingworse. Jimmy’s parents decided it was time to take him to JohnsHopkins. This wasn’t the first time

the Berents had turned to the expertsat Johns Hopkins. Jimmy and his sisters were born prematurely, andJimmy suffered a serious complica-tion. “He was rushed to JohnsHopkins when he was 8 days old. The doctors there saved him then. I wanted him back there now,” says Ginny.

While there was no definitiveanswer, his pediatrician suspectedcancer, so he referred him to theJohns Hopkins Pediatric OncologyClinic. Dr. Donald Small was thepediatric oncologist in charge theday Jimmy arrived. Dr. Smalltrained at Johns Hopkins and wasconsidered one of its rising stars.From the exam area, he could hearJimmy coughing continuously. He walked out to the waiting roomand called him back to a private room immediately. Dr. Small instinctively knew it was bad. He admitted Jimmy that day.

Dr. Small gathered all of theexperts in a conference room justdown the hall from Jimmy’s room. He told Ginny and Ken, “Before you put your head on your pillowtonight, we will have answers foryou.” Dr. Small and the doctors whogathered to review Jimmy’s casestayed in that conference room, allworking together, until they figured it out, recalls Ginny and Ken. “There

was such a feeling of teamwork,” saysKen. “Jimmy was the priority, not theiregos. It was the complete opposite ofour experience at the teaching hospitalin Virginia. I knew Dr. Small and theothers were doing everything withintheir power to save my son.”

That night, as promised, Dr. Smalldelivered the news to Jimmy’s parents.It wasn’t good. Jimmy would need a

biopsy to confirmthe diagnosis, butDr. Small was fairlycertain he hadanaplastic large cell lymphoma,

a cancer of immune cells called T cells. Two days later during surgeryto biopsy a swollen lymph node underhis arm, Jimmy’s heart stopped. The doctors were able to revive him,but his small, diseased-ravaged bodywas weak. They transferred him tothe pediatric intensive care unit in adrug-induced coma, hoping his bodycould recover but aware that the odds were against him.

The pathology report confirmedDr. Small’s suspicion of anaplasticlarge cell lymphoma, and there wasworse news. Jimmy’s lymphoma wasstage 4, the most advanced form ofthe cancer. It was killing Jimmyquickly, and he desperately neededchemotherapy. After all he had beenthrough in recent days, Dr. Small

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JIMMY’S STORY

Jimmy (center) and his sisters

ANAPLASTICLARGE CELLLYMPHOMAA cancer of immunecells called “T cells”

wasn’t sure Jimmy’s body was strongenough to handle chemotherapy. In Jimmy’s weakened condition, the potent anticancer drugs could kill him. Without them, however, he would certainly die. Ginny andKen remember feeling terrified

and hopeful at the same time.“We trusted Dr. Small from the beginning, and if he wasrecommending chemotherapy,we knew that was what we had to do,” says Ginny. Jimmystarted his chemotherapy on Halloween. His pediatriconcology nurse came to theintensive care unit dressed in a cowgirl costume to give himhis first treatment. He was still in a coma.

It took two weeks for Jimmyto wake up. When he finallycame to, it was reminiscent of a sceneout of the Wizard of Oz. His family,doctors, and nurses gathered aroundhis bed. For the entire time he hadbeen on the unit, they had never seenhim awake; never heard his voice. His condition was dire, and they werejubilant that he was improving. Butbeyond that, they wanted to talk tohim and get to know the patient theyhad taken care of for the last twoweeks. Finally, they could interactwith Jimmy.

While Jimmy’s doctors and nurseswere just getting acquainted withhim, Jimmy surprised them with howwell he already knew them. As he lie silent in his bed those two weeks, 3-year-old Jimmy was apparentlyaware of the doctors and nurses who

came in and out of his room. “I knowyou,” Jimmy told one young doctor.“No, you couldn’t,” the doctor replied.“You’ve been unconscious. You’venever met me.” But, Jimmy said, “Yes, I have. I recognize your voice.”

After the doctors and nurses left,

Jimmy shared with his mother anothermemory from his two-week battleback from the brink of the death.“Mom,” he said, “I met God. He was a very nice man,” Jimmy said. “I hadchills,” says Ginny. “It was comfortingto know he wasn’t alone.” She andKen prayed God would remain withtheir son through the months of grueling therapy ahead.

Jimmy’s treatment regimen involvedone week of inpatient anticancer drug treatment followed by threeweeks of outpatient therapy and thena three-week break. This was the routine for the next year. The Berents

family temporarily relocated toBaltimore so the grandparents couldhelp with Jimmy’s sisters. Caring forthree toddlers was difficult enough,but the added responsibilities of managing Jimmy’s cancer made it an impossible task to do alone. The anticancer treatment was hard. It made Jimmy feel sick. His skin turned red. He suffered fevers andchills. But, it was working.

As hard as the treatmentwas, his parents remainedhopeful Jimmy would over-come the cancer. Whenother young patients died, itwas like a punch to the gut.When the goal of each day isto make it to the next day,the death of any patient wasa harsh reminder of anuncertain future. “Would welose Jimmy?” they wondered.The worry was always there,but Ginny and Ken, like mostparents of children with cancer, focused on recovery—

any and every possibility of gettingbetter. The alternative was just toopainful. When one child died, otherparents mourned, held their breath,wondered, worried, pleaded, andprayed. They trudged ahead, a littlemore broken but with even greaterresolve.

Finally, almost one year later to theday, the treatment was over and a CTscan showed Jimmy, now 4-years-old,was cancer free. His parents believedthat cancer was in their past and theywere eager for Jimmy, who it seemedhad spent his entire young life fight-ing one illness or another, to finally

look forward to the pleasures of justbeing a little kid.

They were ready to close thischapter and were preparing for aparty to thank all of the people whohad helped them during Jimmy’s cancer treatment. Jimmy’s mother was busy working in the kitchenwhen he walked in and very casuallysaid to her, “Mom, I don’t feel good.My cancer is back.” The wordsstopped her in her tracks. “It’s in my stomach,” Jimmy told her withcertainty. Ginny and Ken decided togo forward with the party, trying todistract themselves with the details of the preparations and silently reassuring themselves that it couldn’tbe the cancer. The next morning they called Dr. Small.

A CH I LD’S I NTU ITION

Hours later, Jimmy was back at JohnsHopkins for a CT scan of his lungs,the place his cancer had started andso the most likely place it would be ifit had come back. The radiology tech-nicians explained to Jimmy that they

were going to take a look at his lungs.“But the cancer is in my stomach,” the4-year-old told them. He was insistentthat they look there. A techniciancame out to the waiting room to talk to Jimmy’s mother. “Your sonwants his stomach scanned, but ourinstructions are to scan his lungs,” the technician explained. Jimmy’s

mother asked the technician to checkwith Dr. Small who then ordered ascan of Jimmy’s abdomen. Just asJimmy said the night before, his cancerwas back, and it was in his stomach.

“How could this be?” Ginny andKen wondered. Just days before theywere celebrating Jimmy’s recovery.They felt defeated, but a determinedDr. Small assured them he still had

ways of fighting the cancer. This timethe treatment involved a stem celltransplant using Jimmy’s own bloodstem cells. These are the cells fromwhich all other blood and immunecells originate. His doctors collectedhealthy blood stem cells from Jimmy’scirculating blood, in a proceduremuch like a blood donation. A tech-nology developed by a team of cancerexperts at Johns Hopkins, includingDr. Small, made it possible to extractthe rare but vital stem cells from theblood. Jimmy received a four-day regimen of total-body radiation therapyto destroy his diseased bone marrowand the cancer cells lurking within it,followed days later by an intravenous(IV) infusion of the blood stem cellscollected earlier. These cells would bekey to Jimmy’s recovery and shouldgrow into a normal and cancer-freebone marrow.

That’s what happened, and at last,things were back to normal for theBerents family. The years went bywithout no serious health scares. “It was wonderful,” recalled Ginny.

There were bumps in the road. Jimmyinjured one knee in seventh gradeplaying lacrosse and suffered thesame injury to the other knee ineighth grade. These types of thingsthey could handle. Anything but cancerseemed manageable. Then Jimmy,now 14, began experiencing excruciatingback pain. His parents again turned to Dr. Small who ordered an MRI.

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Jimmy begins his battle with cancer

“WE TRUSTED DR. SMALL FROM THE BEGINNING, ANDIF HE WAS RECOMMENDING CHEMOTHERAPY, WEKNEW THAT WAS WHAT WE HAD TO DO.” – Ginny Berents

AS HARD AS THE TREATMENT WAS, HIS PARENTSREMAINED HOPEFUL JIMMY WOULD OVERCOME THE CANCER.

A TECHNOLOGY DEVELOPED BY A TEAM OF CANCER EXPERTS AT JOHNS HOPKINS, INCLUDING DR. SMALL, MADE IT POSSIBLE TO EXTRACT THE RARE BUT VITAL STEM CELLS FROM THEBLOOD...THESE CELLS WOULD BE KEY TO JIMMY’SRECOVERY AND SHOULD GROW INTO A NORMAL AND CANCER-FREE BONE MARROW.

Jimmy is comforted by sister Meredith

It revealed a tumor on his spine.Jimmy faced yet another surgery asJohns Hopkins neurosurgeons operatedto painstakingly scrape the tumor,layer by layer, from his spine. His parents sat nervously and waited forJimmy to come out of surgery, hopingfor the best but well aware of the

possibilities. It was a scene that hadbecome all too familiar for Ginny andKen. Would the procedure to removethe tumor leave Jimmy paralyzed?Was the cancer back? This time there

was good news. The surgeons wereable to completely remove the tumorwithout causing any paralysis, and the tumor was benign. Jimmy made a full recovery.

Dr. Small wondered if Jimmy’sknee injuries and spinal tumor wererelated to the cancer therapy he

received. Health issues like these arenot uncommon in pediatric cancerpatients. Therapies that poison cancercells also can be toxic to normal cellsand developing bodies. This damage

can manifest itself years after treat-ment has ended in muscular andskeletal weakness, heart and otherorgan toxicities, and even new cancers.Dr. Small and his pediatric oncologyteam work diligently to unravel thecauses and prevent late-occurringeffects of cancer treatment. He putthe Pediatric Oncology program atJohns Hopkins on the forefront ofsurvivorship issues and established a dedicated program, led by nursepractitioner Dr. Kathryn Ruble, tomonitor and manage the late effectsof pediatric cancer therapy.

CANCE R I S N’T PE R MAN E NT

“We thought, at this point, we’redone,” recalls Ken. How could therebe anything else, he wondered. Jimmyand his family had already overcomeunimaginable hurdles.

Then, in his sophomore year ofhigh school, Jimmy experiencedblurred vision, was waking up at nightthirsty, and was using the bathroom a lot. One morning after he left forschool, his mother went to his roomto make his bed and saw two largecups at his bedside. They were both empty. “No, this can’t be,” shethought. His mother recognized thesigns. Jimmy’s father was diabetic,and now she suspected Jimmy wastoo. She called Jimmy’s school nurse,grabbed Ken’s blood glucose meter,and headed to the school. The nursetested Jimmy’s blood sugar, and it was so high she directed them to goimmediately to the emergency room.It looked like Jimmy had type 1 ( juvenile) diabetes.

For nearly his entire life, Jimmy hadbeen battling disease or injury. Yet,through it all, he remained optimisticand steadfast. He never complained.He never felt sorry for himself orbroke down, but this time was different.The diabetes diagnosis challenged hisresolve and broke his spirit. Jimmysobbed. “None of the things I had beenthrough before were permanent,” hesays. “Dr. Small had been able to getrid of everything else, but you can’tget rid of this,” Jimmy lamented.

Just three months into his diabetestreatment, Jimmy was still coming to terms with the knowledge that hewould need daily insulin injectionsfor the rest of his life when he receiveda well-deserved reprieve. He didn’thave diabetes. Doctors believed hisblood sugar could be controlled with diet and exercise. He no longerneeded insulin.

The remainder of his high schoolyears were uneventful. There were nomore injuries or illnesses. His cancerappeared to be a thing of the past. It had been more than 14 cancer-free

years since his stem cell transplant.Jimmy looked forward to going off tocollege. His high school class was asmall one of just 120 kids, and two ofthem were his sisters. He was anxiousto meet new people. He applied andwas accepted to Wake Forest University.

U NTH I N KAB LE WOR DSAs a member of the graduating classof 2012, Jimmy had a few more rightsof passage before heading off to WakeForest. One of these, senior week atthe beach and an ill-fated dunk in agarden hose-filled hot tub, left him

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DR. SMALL AND HIS PEDIATRIC ONCOLOGY TEAMWORK DILIGENTLY TO UNRAVEL THE CAUSES AND PREVENT LATE-OCCURRING EFFECTS OF CANCER TREATMENT. HE PUT THE PEDIATRICONCOLOGY PROGRAM AT JOHNS HOPKINS ON THE FOREFRONT OF SURVIVORSHIP ISSUES... THE REMAINDER OF HIS HIGH SCHOOL YEARS

WERE UNEVENTFUL. THERE WERE NO MOREINJURIES OR ILLNESSES. HIS CANCER APPEARED TO BE A THING OF THE PAST. IT HAD BEEN MORETHAN 14 CANCER-FREE YEARS SINCE HIS STEM CELL TRANSPLANT.

Before Cancer: Ken and the triplets at age 3just before Jimmy's diagnosis Take Me Out to the Ballgame: The Make-A-Wish Foundation

arranged for Jimmy and his sisters to meet Orioles great Cal Ripken, Jr.

Jimmy and Dr. Small head off to a Ravens game

and several of his friends with skininfections and rashes. Jimmy had aharder time recovering, but that wasnot surprising given his medical history. He had a swollen lymph nodein his leg that just wouldn’t go away.Antibiotics worked at first, but evenwith five rounds of treatment, theinfection still returned. An ultrasoundrevealed nothing more than a swollenlymph node, so Jimmy began treat-ment with a stronger antibiotic. Ifthat didn’t work, the next step wasintravenous antibiotics. He cringed

at the thought of going away to college with an IV.

The infection was taking its toll.Jimmy was tired and achy most of thetime. All he wanted to do was sleep.He was packing and getting ready tohead off to college in a few days, andwith the infection still hanging on, his doctors decided to use a needle toextract some cells from the swollenlymph node. If they could determineexactly what kind of infection he had, they could identify the correctantibiotic to finally get rid of it.

It was a busy time in the Berents home. As parents of triplets, Ginny and Ken had three childrenheading off to three different collegesin three different states on three different days. It was hectic, chaotic, and stressful, but it was a good type of chaos, filled with excitement and promise.

Ginny was shopping for dorm supplies with one of Jimmy’s sisterswhen her cell phone rang. It wasJimmy’s pediatrician calling about theinfection. “It’s lymphoma,” he said.She stood speechless and motionlessas she heard those unthinkable words.It took her breath away. “How couldthis be?” she wondered to herself.Never once had she imagined theswollen lymph node was Jimmy’scancer returning. He had been cancer-free for 14 years. She was socertain — everyone was — that it wasrelated to the skin infection. Shecalled Ken to give him the impossiblenews. Her next call was to Dr. Small.He had the cells taken from thelymph node sent to Johns Hopkins so expert pathologists there couldconfirm the diagnosis.

Ginny and Ken couldn’t imaginehow they were going to tell Jimmythe news. He was worried about starting college on IV antibiotics.Now they had to tell him that the cancer he had fought off twice, the cancer that dominated most of his childhood, the cancer hethought was gone for good, was back.

In just a few days, he planned tocelebrate his 19th birthday and thenleave for college. It seemed too cruelto be true. “One day, I’m playing videogames, thinking I’m going away tocollege. Then, I find out my cancer is back,” Jimmy recalled. “It was horrible. I was angry.”

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A B ETTE R TR EATM E NT

Instead of heading off to Wake ForestUniversity, he was going back toJohns Hopkins “I was devastated, but Dr. Small gave me hope,” saysJimmy. “It looks like anaplastic largecell lymphoma again,” Dr. Small toldJimmy and his parents. “But, don’tworry,” he said, “The treatment ismuch better now.”

There had been much progresssince Jimmy’s last relapse 14 yearsago. Added to the standard cancertreatment was something called targeted therapies. In the 14 yearssince Jimmy’s stem cell transplant,

Johns Hopkins researchers had madesignificant advances in the laboratorythat revealed alterations to genes and

the chemical environment of genesthat ignite the cancer progress.Targeting and blocking these altered

IN THE 14 YEARS SINCE JIMMY’S STEM CELLTRANSPLANT, JOHNS HOPKINS RESEARCHERSHAD MADE SIGNIFICANT ADVANCES IN THE LABORATORY THAT REVEALED ALTERATIONS TOGENES AND THE CHEMICAL ENVIRONMENT OFGENES THAT IGNITE THE CANCER PROGRESS.TARGETING AND BLOCKING THESE ALTEREDGENES WITH DRUGS WAS AMONG THE NEWESTAND MOST PROMISING BREAKTHROUGHS IN CANCER TREATMENT.

Jimmy and his sisters graduate from high school

J U S T S U P P O S E

Jimmy with his parents, Ginny and Ken

THERE HAD BEEN MUCH PROGRESS SINCE JIMMY’SLAST RELAPSE 14 YEARS AGO. ADDED TO THE STANDARD CANCER TREATMENT WAS SOMETHINGCALLED TARGETED THERAPIES.

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genes with drugs was among thenewest and most promising break-throughs in cancer treatment.

Ken understood the importance of research in finding better therapiesfor cancer. As chairman of the Johns Hopkins Pediatric OncologyAdvisory Council, he had been workingdiligently to raise money for pediatriccancer research. When he began his work, he thought Jimmy’s battlewas behind them. He was focused on raising funds that would help otherchildren. Now, he was dependingupon these advances to save his son’s life.

One of the advances was a shorterlength of treatment. This time thetreatment would take four monthsinstead of a year. Jimmy received his

final cancer treatment in August atCamp Sunrise, a Johns Hopkins ownedand managed camp for children withcancer. Jimmy attended the camp foryears and now is a camp counselor.He took his first college courses close to home at the University of

Richmond, but with treatment behindhim, he is preparing to leave for Wake Forest University this fall.

Despite a lifelong battle with cancer,Jimmy is grateful, not bitter. “I havefound many more benefits than costsfrom having cancer,” he says. “I havemet and become friends with other

patients, who will be friends forever. I got to know Dr. Small. He took me toa Ravens football game (a game wherethe Ravens beat the Raiders 55-20;the most points scored in franchisehistory). He let me fly his plane once.He came to many of my lacrosse

games. Oh yeah, and he saved my lifethree times. I’m lucky to have him.”The friends he has lost to cancerremind him that there are thingsworse than the fight. “I can’t com-plain,” he says. “Yes, I’ve had cancerthree times, but more importantly,I’ve survived cancer three times.”

Research advances helped JimmyBerents beat cancer three times

“YES, I’VE HAD CANCER THREE TIMES, BUT MORE IMPORTANTLY, I’VE SURVIVED CANCER THREE TIMES.” – Jimmy Berents

The challenge of pediatric cancer is too great for any one of us to take on alone. Together, however, we can make a difference.

Jimmy’s story illustrates thepower of research. The stem celltransplant he received and the targeted therapies he is getting today are the result of laboratory and clinical discoveries. Withoutthese advances, his story could bevery different. Improved treatmentslike the ones that helped Jimmy don’t just happen. They are the result of a partnership between philanthropy and science.

As Jimmy’s story illustrates, ourteam of pediatric oncologists do not give up. Patients, families, and

doctors from all over the world turn to us for answers. Your contributions to Johns HopkinsPediatric Oncology do not supportthe medical expenses of individualpatients but rather fund the sciencethat leads to better treatments andcures for all children.

In the battle against childhoodcancer, every gift matters, just asevery child matters. It doesn’t matterif it is $1, $100, $1000, or $1 million.Every donation makes a difference,and we are appreciative of each one.Together, we will rewrite the story of childhood cancer.

Thank you for joining us in ourgoal to ensure that the story of everychild with cancer has a happy ending.

WOR KI NG TOG ETH E R TO CLOS E TH E BOOK ON

CH I LDHOOD CANCE R

J UST SU PPOS E

For more information on Johns HopkinsPediatric Oncology, contact:

Stephanie DavisJohns Hopkins Kimmel Cancer Center

750 East Pratt Street17th Floor

Baltimore, Maryland 21202

Sdavis9@jhu.eduwww.hopkinsmedicine.org/kidscancer