A little princess returns to health
A little princess returns to health
By Cathy Conley / cconley@cnc.com Braintree Forum Wednesday, March 19, 2003
Ashley Bonigli is a "princess diva," her mother Barbara calls her.
She was a princess diva in her first two years of a healthy, robust life.
She was a princess diva even when diagnosed with neuroblastoma at two years old.
She was a princess diva for an excruciating year of surgery, chemotherapy, stem cell transplants and radiation, wearing her Cinderella, Snow White and Belle costumes in the hospital with a crown on a little head that had lost all its hair.
And she is a princess diva today at four years old, a beautiful and healthy child still wearing all her costumes, especially the crown that sits atop a mass of red curls.
Her father Ron is biking in the Pan Mass Challenge in August to raise money for neuroblastoma research so that no other little prince or princess has to endure what his daughter has gone through.
Ashley's story began one day in January, 2001. She was energetically running through the house as any two year old would. She banged her head against a door and got a black eye.
The bruises went away, but a swelling remained. The pediatrician said that it was a contusion and would go away eventually.
Mother's instinct set in. Barbara felt that something was wrong and got a second opinion at Mass Eye and Ear.
The news was devastating. A catscan showed a mass behind her eye. The accident was just a coincidence. A biopsy showed it was cancer.
First Barbara and Ron learned that the tumor behind her eye was pressing on the brain. Further catscans showed a large tumor in her abdomen.
The next piece of stunning news was that the cancer was neuroblastoma, a malignant tumor derived from nerve cells.
Then came the most devastating news of all. It was Stage 4 neuroblastoma, the most advanced stage of cancer progression.
With that diagnosis, the little princess began an agonizing year-long journey.
First the doctors at Mass General concentrated on the mass behind her eye.
The parents waited for eight hours for the outcome, much of which was spent at Gate of Heaven Church in South Boston with their cell phone.
The procedure behind Ashley's eye was successful. The immediate danger was alleviated.
After the procedure, Ashley was in the pediatric intensive care unit.
Now it was time to attack the tumor in the abdomen and the neuroblastoma at its source.
A new procedure had been developed by Dana-Farber. It was extremely aggressive, but survival rate jumped sixfold from 10 percent to 60 percent.
The protocol involved more surgery, intensive chemotherapy, radiation, and two stem cells transplants.
The initial phase of the treatment included six courses of chemotherapy.
Blood stem cells were collected after the third course and frozen, they would be re-infused after chemotherapy was completed to help regenerate bone marrow and blood cells destroyed by the high dose chemotherapy.
Ashley's spirit was phenomenal as she faced each procedure.
Barbara brought her trunk full of princess dresses to the hospital, and she enthralled the other little patients and the staff as Cinderella, Snow White, Ariel of "The Little Mermaid" and Belle of "Beauty and the Beast."
Even when she couldn't leave her bed because of exhaustion or the tubes in her body, she donned her magical costumes.
Sometimes she wore a crown on top of one of the many hats her parents had bought for her.
Sometimes she wore the crown proudly on her head as if she still had a tousle of red curls.
Her father shaved his own head as a mirror image of his little girl during chemotherapy.
Ashley was in the hospital at least 50 percent of the time for a year, either her mother or her father at her side every moment.
Father Robert Canole, the parish priest from St. Francis Church, visited the family and blessed Ashley before every visit to the hospital.
The months passed.
On July 4, when other children were watching fireworks, Ashley was having surgery on the tumor in her abdomen.
On Sept. 11, 2001, when the world watched in horror as the Twin Towers disintegrated, Ashley was having full body radiation.
On Oct. 1, 2001, Ashley completed her second stem cell transplant.
Shortly thereafter, tests showed that she was completely cancer free, and she has been ever since.
On Aug, 2, Ron, as well as other family members of neuroblastoma children in the Boston area, will be riding in the Pan Massachusetts Challenge.
The Pan Massachusetts Challenge is a fund raising cycling event which raises money for the Jimmy Fund of the Dana-Farber Cancer Institute. The Pan Mass raises more money than any other athletic charity event in the country. Last year alone, it raised $15 million for the Jimmy Fund.
Ron and Barbara can be reached by phone at 617-733-8134 or by e-mail at rjb8@beld.net.
To make a donation to the ride, checks should be made out to Pan Mass Challenge and sent to Ron and Barbara Bonigli at 69 Waldron Rd. in Braintree.
Anyone who is interested in becoming a rider on the Friends For Life Team of the Pan Mass Challenge should call Ron.
By Cathy Conley / cconley@cnc.com Braintree Forum Wednesday, March 19, 2003
Ashley Bonigli is a "princess diva," her mother Barbara calls her.
She was a princess diva in her first two years of a healthy, robust life.
She was a princess diva even when diagnosed with neuroblastoma at two years old.
She was a princess diva for an excruciating year of surgery, chemotherapy, stem cell transplants and radiation, wearing her Cinderella, Snow White and Belle costumes in the hospital with a crown on a little head that had lost all its hair.
And she is a princess diva today at four years old, a beautiful and healthy child still wearing all her costumes, especially the crown that sits atop a mass of red curls.
Her father Ron is biking in the Pan Mass Challenge in August to raise money for neuroblastoma research so that no other little prince or princess has to endure what his daughter has gone through.
Ashley's story began one day in January, 2001. She was energetically running through the house as any two year old would. She banged her head against a door and got a black eye.
The bruises went away, but a swelling remained. The pediatrician said that it was a contusion and would go away eventually.
Mother's instinct set in. Barbara felt that something was wrong and got a second opinion at Mass Eye and Ear.
The news was devastating. A catscan showed a mass behind her eye. The accident was just a coincidence. A biopsy showed it was cancer.
I was in total shock," Ron said.
"I felt I was in a bad dream and someone would wake me up. One day, we have this healthy little girl. The next day, doctors tell us she has cancer," Barbara said.
"From that moment on for the next two weeks, the news got worse every day," said Ron, an engineer for NStar.
First Barbara and Ron learned that the tumor behind her eye was pressing on the brain. Further catscans showed a large tumor in her abdomen.
The next piece of stunning news was that the cancer was neuroblastoma, a malignant tumor derived from nerve cells.
Then came the most devastating news of all. It was Stage 4 neuroblastoma, the most advanced stage of cancer progression.
With that diagnosis, the little princess began an agonizing year-long journey.
First the doctors at Mass General concentrated on the mass behind her eye.
The parents waited for eight hours for the outcome, much of which was spent at Gate of Heaven Church in South Boston with their cell phone.
"We prayed and we prayed. All of my family and friends were praying. We had a prayer tree growing," Barbara said. Ron described it as "the longest eight hours of my life."
The procedure behind Ashley's eye was successful. The immediate danger was alleviated.
"I can't say enough about the doctors at Mass General. They were heroic. They saved Ashley's life," Ron said.
After the procedure, Ashley was in the pediatric intensive care unit.
"That is the saddest place in the world," Ron said. . "All the children have tubes and probes in them from head to toe. All you can hear is monitors beeping and alarming."
Now it was time to attack the tumor in the abdomen and the neuroblastoma at its source.
A new procedure had been developed by Dana-Farber. It was extremely aggressive, but survival rate jumped sixfold from 10 percent to 60 percent.
The protocol involved more surgery, intensive chemotherapy, radiation, and two stem cells transplants.
The initial phase of the treatment included six courses of chemotherapy.
Blood stem cells were collected after the third course and frozen, they would be re-infused after chemotherapy was completed to help regenerate bone marrow and blood cells destroyed by the high dose chemotherapy.
Ashley's spirit was phenomenal as she faced each procedure.
Barbara brought her trunk full of princess dresses to the hospital, and she enthralled the other little patients and the staff as Cinderella, Snow White, Ariel of "The Little Mermaid" and Belle of "Beauty and the Beast."
Even when she couldn't leave her bed because of exhaustion or the tubes in her body, she donned her magical costumes.
Sometimes she wore a crown on top of one of the many hats her parents had bought for her.
Sometimes she wore the crown proudly on her head as if she still had a tousle of red curls.
Her father shaved his own head as a mirror image of his little girl during chemotherapy.
Ashley was in the hospital at least 50 percent of the time for a year, either her mother or her father at her side every moment.
Father Robert Canole, the parish priest from St. Francis Church, visited the family and blessed Ashley before every visit to the hospital.
The months passed.
On July 4, when other children were watching fireworks, Ashley was having surgery on the tumor in her abdomen.
On Sept. 11, 2001, when the world watched in horror as the Twin Towers disintegrated, Ashley was having full body radiation.
"We were living our own 9-ll,' Ron said.
On Oct. 1, 2001, Ashley completed her second stem cell transplant.
Shortly thereafter, tests showed that she was completely cancer free, and she has been ever since.
"We thank God every day," Barbara said. "We try to help other families going through what we have been through."
"I feel that we are getting close to a cure for certain types of cancer. I feel the protocol from Dana-Farber used on Ashley saved her life," Ron said.
"Because of the protocol developed at Dana-Farber in the mid 1990s, Ashley is in remission today and a healthy and happy four year old," Ron said.
On Aug, 2, Ron, as well as other family members of neuroblastoma children in the Boston area, will be riding in the Pan Massachusetts Challenge.
The Pan Massachusetts Challenge is a fund raising cycling event which raises money for the Jimmy Fund of the Dana-Farber Cancer Institute. The Pan Mass raises more money than any other athletic charity event in the country. Last year alone, it raised $15 million for the Jimmy Fund.
"All money that I and the other riders on my team raise will go directly to neuroblastoma research at Dana- Farber. Dana-Farber has set up a neuroblastoma endowment at the Jimmy Fund, and all money raised by myself and the other family members of children who have had or do have neuroblastoma will go into the endowment to help in Dana-Farber's research into better treatments for neuroblastoma and relapsed neuroblastoma.
"I feel my daughter is with us today because of the protocol developed at Dana-Farber in the mid 90s. Before this treatment, the survival rate for children with Stage 4 neuroblastoma was about 10 percent, With the latest treatment, which my daughter received, doctors are seeing a 60 percent survival rate, which is a great improvement. "But my friends and I and Dana-Farber want to see all children with neuroblastoma cured and plan to make it happen," Ron said.
Ron and Barbara can be reached by phone at 617-733-8134 or by e-mail at rjb8@beld.net.
To make a donation to the ride, checks should be made out to Pan Mass Challenge and sent to Ron and Barbara Bonigli at 69 Waldron Rd. in Braintree.
Anyone who is interested in becoming a rider on the Friends For Life Team of the Pan Mass Challenge should call Ron.
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