Boston, MA., 05/09/13, The Boston Red Sox have been inextricably linked with the Boston Marathon bombings. The blasts at the finish line detonated minutes after the final pitch of the 3-2 Red Sox victory on the first game of the season. It was star slugger David Ortiz who coined Boston’s memorable, expletive-pierced rallying cry. The Boston Strong logo borrowed the Gothic “B” that adorns the team’s caps. And Fenway Park became the venue where, throughout the summer, crowds cheered the victims and the healers as they walked — or were helped — to the mound for the ceremonial first pitch. Heather Abbot, like many of the Boston Marathon bombing victims, worked hard in rehab for her turn on the mound.
Boston, MA., 03/28/13, Mayor Thomas Menino—the longest sitting mayor in Boston’s history—-decides not to run for a fifth term. On the morning of the decision, he invites his inner staff to his offce to tell them inperson. After heart felt words, the mayor–who has been in ill health for the last nine months, lowers his head on his hands as he struggles with his emotions. From left to right, Menino, Peter Meade, head of the BRA, William Sinnott, Corporation Counsel, (back to camera), Angela Menino (mostly hidden), Boston Police Commissioner Ed Davis, Brian Swett, Chief of Environment and Energy.
The Gospel of Calle The death of a child is an experience that is usually as private as it is excruciating. Five-year-old Caroline ÒCalleÓ Cronk was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in November 2012. This rare brain stem cancer—a classic “orphan disease” because it affects so few children– has no effective treatment, no cure, and a pattern of killing its victims within nine months to a year. Up to 200 children in the U.S. develop the brutally aggressive tumor Ñ referred to as Òthe monsterÓ by pediatric oncologists. That’s the excruciating part. But her parents, having been told there had been no new medical advances in 30 years, threw themselves into the world to raise social awareness and funds for research. They could have circled the wagons and pulled inward as they ushered their perfect five year old out of this world. In the last six months of their daughter’s life, they raised over $700,000 for their Hope For Caroline Foundation. In their small south shore town of Norwell, there were auctions, road races, prayer vigils, bake sales, high school hockey teams selling T-shirts, classmates selling eggs from their family chickens, grade-schoolers collecting allowance money—-all with the knowledge that this would— in all likelihood—not help their daughter, but would offer hope for the other 199 children a year who are diagnosed with this disease. Their daughterÕs last months were filled with a communityÕs unwavering support, her parentsÕ devotion, prayer, faith, and love. 1. At any moment of the day or night, whether Caroline was having a good day or bad, Rachael would stop what she was doing and pull her daughter in for a hug, filling her lungs, arms and soul with the essence of her ailing daughter.
2. One of the few options for extending life by a few more months, was brutal round of radiation and steroid treatment. While it shrunk CarolineÕs tumor so that her balance returned and she could enjoy favorite activiites like wearing princess dresses, and singing and dancing along to Taylor Swift songs with her friend, it also changed her usually cheerful and calm demeanor. She could erupt into loud and emotional tantrums.
3. Calle has a visit from a visiting nurse to check her blood. She refuses to use a numbing cream when the nurse accesses her port. Rachael stays calm as Calle cries out in pain. For each contact with the nurse, temperature taking, blood pressure checking, cleaning the port, and the actual blood draw, Rachael offers Calle a coupon for the Build A Bear store. In the last six months of Calle’s life, the house never seemed to be empty. Friends and strangers dropped by with an offer to wash windows, drop of toys, cook meals, or hold Calle’s hand when she had her port cleaned.
4. Calle loved to swim—so much so that her parents pledged to build a pool in their backyard for Calle’s last summer. The builders worked around the clock to finish, many of them openly weeping when the water truck pulled up and Rachael could bring Calle down to the pool. Older brother, Connor, 8, brought over a raft for Rachael to place Calle on. Says Rachael, ÒI feel like she is scared inside. She knowÕs she canÕt walk, she knows she canÕt talk, and things are changing…..I donÕt want to look back and feel like I wasnÕt there when she needed me.
5. CalleÕs Miracle Run brought over 2000 South Shore supporters of Hope For Caroline together for a 5k and 10k race on a chilly spring morning at the local high school. Her familyÕs efforts to raise awareness and support inspired the community. School children and teenagers sent her handmade cards, sold cupcakes and bracelets to raise funds for research. They held pep rallies and organized prayer groups to send strength her way. ÒThere are a few moments I will remember all my life,Ó Kevin wrote on Facebook the day of the road race. ÒWhen I saw Rachael on our wedding day, when Connor and Calle were born, and today when I crested the hill and saw all those 2,000-plus people ahead of us. Incredible.Ó
6. In February, barely three months after their daughterÕs diagnosis, Kevin and Rachael Cronk present a check to Dana Farber/Children’s Hospital Cancer CenterÕs Jimmy Fund for $100,000. After the ceremony, Rachael and Kevin consult with Calle’s doctor, Dr. Peter Manley, pediatric oncologist , before heading over to get Calle her first MRI since the radiation treatment. Kevin and Rachael keep their anxiety from those around them—the MRI results will show how much the tumor has shrunk. Kevin soothes a hungry and cranky Calle on this morning when she had to fast before the MRI.
7. In June, Caroline and her mother have a shopping spree at the American Girl Doll store in Natick. Her troubling symptoms have returned–and Calle struggles for balance. The disease progressed almost daily. CarolineÕs left arm became clumsy and stopped working. Then her left leg. She started slurring her words, and facial expressions began to fade.
8. Calle’s sixth birthday party is moved up by seven weeks as she continues to weaken. A pool party is held at a friend’s house. When Calle became too cold and tired to swim, she and her dad, Kevin, watched the other children play.
9. Father Chris Hickey leads a prayer vigil at Nortre Dame Academy for the Cronk family. Says Kevin Cronk, ÒShe has touched literally thousands of hearts around the world, inspired the Hope for Caroline foundation to end DIPG, united the community, and brought people closer to God.Ó
10. No longer able to eat whole foods, Calle is fed baby food on a spoon by Rachael. Her beloved dog Fluffy on her lap. Caroline was a girl who knew her own mind–She liked Peppa Pig and Scooby-Doo cartoons. French onion soup and lobster were her favorites, and a cheeseburger with extra pickles became known as a ÒCalle Special.Ó
11. Ever since Calle’s diagnosis, she has never slept alone—either her mother or father or aunt or grandparent sleeps with her. One July night Rachael lay next to Caroline in the room where she and her daughter slept. ÓDo you see God?Ó she asks her. Caroline could no longer speak and had only slight movements. Her faltering system had begun to hunger for air, and all at once Rachael was coming to the realization that her daughter would not live, that the chemotherapy would not work and that no new cure would come. She felt a catch in her throat and began to cry. ÒIs he talking to you?Ó Rachael said. ÒIs he calling you?Ó Caroline stared back at her mother and slowly nodded her head.
12. Caroline ÒCalleÓ Cronk died in her parentsÕ embrace on July 18. At her funeral, Rachael wore a white dress and CarolineÕs red toe nail polish. She carried a piece of soft fabric, one half of a blanket Caroline loved that went by the name Light B. The other half they left with Caroline to be buried with her.
Boston, MA., 10/16/13, Boston Ballet rehearsal of Act III from “La Bayadere.” The piece is called “The Kingdom of Shades” and features 32 female dancers in classical tutus. During the rehearsal it appears that one of the ballerinas left in a hurry.
Boston, MA., 04/24/13, It was more than a week before Boylston Street opened up after the Boston Marathon Bombings at the finish line. It was a somber day with people visiting the scene of the terrorist attack. One family dressed their daughters up as angels as they made their way to school on Boylston Street.
Snow and ice made for an unsteady yet determined bicycle commute across the Harvard Bridge over the Charles River.
Doctors disagree all the time over the diagnosis and treatment of patients, but there is a new and remarkably contentious frontier in pediatric medicine. A difference of opinion among doctors at separate Boston hospitals has escalated with stunning speed.
Nicole is lightening fast on her knees as she makes her way downstairs. She does not walk on her feet.
Nicole works on crafts with her family.
The Hilliard Family lost an older child to a complicated diagnosis. She was cared for at Boston Children’s Hospital. Their son, Gabiel, is a not a patient at that hospital, yet Children’s alerted child protective services over his diagnosis. “The fact that Children’s has so much power that they can get us in trouble with a totally different hospital across the city is appalling,” said Jessica Hilliard, the mother involved in that case. Her son Gabriel is being treated for mitochondrial disease. The state did open a new investigation but ultimately closed it.
Gabriel has spent months at Tufts, his hospital room has become his home, as his family deals with child protective services.
Gabriel’s father, Sean, spends every night on a cot in his son’s hospital room.
Gabriel and his mother and father—in addition to focusing on appropriate therapies for their son, they must also tangle with child protective services.
Fourteen-year-old Justina Pelletier has battled mitochondrial disease for much of her life. She had a medical team at Tufts New England Medical caring for her. When her health took a turn for the worse a year ago, her long-time doctor at Tufts urged her parents to send her to Boston Children’s Hosptial to be seen by her long time gastroenterologist who had just moved to Children’s. Within three days, Children’s disagreed with the diagnosis of Tufts, instead insisting that she her issues were psychological in nature, and had taken custody of Justina— the Department of Children and Families was now in charge. The family continues to fight for Justina who has been on a locked psych ward for over a year. A judge recently ruled that Justina may move to a non-hospital setting, and has set the stage for custody being moved back to her parents after a period of time. Her parents, Linda, and Lou, and older sister Jennifer are allowed to visit once a week.
In July, Linda Pelletier is on the phone with DCF staff and has learned that her daughter Justina will not come home but will go to foster care. After the call with officials, Justina called and spoke to her tearful family. On couch is dog Roxie—who, at Justina’s request, sang along with sister Julia on the piano.
he Pelletier family, Lou and Linda, and their other daughters, learn during a phone call that their daughter, Justina, will be going to foster care. On left is sister Julia who is on phone with Justina. Linda and Lou in center, with sister Jessica on right.
Brighton, MA., 09/19/13, Sometimes the best part of a parade is what happens at the beginning and the end. The Allston Brighton Parade wraps up in Oak Square. The Boston College marching band cooled off at the end of the parade. In center is Taylor Nagai, who plays the bass drum and on right is Sourabh Banthia, who plays the cymbols.
Sometimes the best part of soft serve on a hot summer day is in the anticipation. At Dairy Freeze, a quintessential New England ice cream stand, four year old Ryan of Milton waited with anticipation for his vanilla softserve.
Boston, MA., 04/24/13, Boylston Street opens for the first time to the public since the bombs went off at the finish line of the Boston Marathon. Tanya McIntyre brought her twins Tiana and Colten, 9, down to the site of the first bombing and said a prayer.
Beverly, MA., 03/04/13, One-hundred-and-six-year-old Fred Butler received his high school diploma he never got during his long life. Beverly’s oldest living resident, a WWII vet who left school early to help his mother raise his five siblings was honored at the high school.
Boston, MA., 08/05/13, Kim and Jon Napoli, of Roxbury, were working at their Newbury Street store on the day of the Boston Marathon bombings. Their their young daughters, Eva, 2, and Gianna, 3., were with their nanny and witnessed the bombs at the marathon one block away. The older child, Gianna, has since had nightmares and recoiled from any loud noises. She was robbed of her innocence that day, Napoli says of her elder daughter. She knows things can go wrong. She thinks a marathon is people running away. For a story on the ongoing psychological effects of the traumatic events in Boston.
Boston, MA., 11/15/13, Grant Roden sat at the edge of the pond at sunset in the Public Garden.
Buddy the Chihuahua and Princess the Poodle were riding in a tractor trailer with their owners when if chrased on the exit ramp to the Mass Pike in Hopkinton. Princess escaped the crushed cab and ran into traffic where good samaritans and an off-duty state trooper safed her from a bad ending. Trooper Eric Gahagan carried the trapped Chihuahua from the wreck to the safety of his vehicle. He took them home for the night.
Charlestown MA., 05/14/13, Boston Marathon bombing survivor and amputee Roseann Sdoia was released from Spaulding Rehabilitation Hospital and was escorted to North End home by fire engines. Boston Firefighter Mike Materia, is credited with helping to save Roseann Sdoia,cq, after the marathon bomb attack. He transporterd her in a police prisoner transport van when there were no ambulances. He held her hand and also held tight to her tourniquet to save her life. She lost a leg, but gained new friends, a new appreciation for life and a life-long gratitude to those how saved her life. At the end of the press conference, the hero firefighter picked her up to hug her.
