Suzanne Kreiter/The Boston Globe – 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 “Calle” 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, referred to as “the monster” 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 daughter’s last months were filled with a community’s unwavering support, her parents’ 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.

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.

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 Caroline’s 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.

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.

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, “I feel like she is scared inside. She knows she can’t walk, she knows she can’t talk, and things are changing…..I don’t want to look back and feel like I wasn’t 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

5. Calle’s 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 family’s 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. “There are a few moments I will remember all my life,” Kevin wrote on Facebook the day of the road race. “When 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.”

 

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.

6. In February, barely three months after their daughter’s diagnosis, Kevin and Rachael Cronk present a check to Dana Farber/Children’s Hospital Cancer Center’s 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.

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. Caroline’s 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.

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

9. Father Chris Hickey leads a prayer vigil at Nortre Dame Academy for the Cronk family. Says Kevin Cronk, “She 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.”

 

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

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 “Calle Special.”

 

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.

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. “Do you see God?” 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. “Is he talking to you?” Rachael said. “Is he calling you?” 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.

12. Caroline “Calle” Cronk died in her parents’ embrace on July 18. At her funeral, Rachael wore a white dress and Caroline’s 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.