Life beyond cancer: One family's story of hope
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Life beyond cancer: One family's story of hope
On July 6, 2001, my wife Denyse and I received the terrible news that our 19-month-old daughter, Isabelle, had a malignant tumor that grew from her spine and was rapidly filling every available space in her abdomen. It was neuroblastoma, a cancer of the nervous tissue. We had come to Children's Hospital from our Cape Cod vacation so that Isabelle could undergo a routine medical procedure to find the cause for a urinary tract infection. We hoped to return to the Cape by midday to go sailing.
Never again will I take an afternoon of sailing, or the health of my children, for granted.
The previously invisible world of childhood cancer emerged for me as I walked the corridor to the oncology unit at Children’s known as 7-West. I glanced at the cartoon characters painted on the windows and the photos of former patients, and without warning, I saw this new world. Through the open door of a patient room, a little person was looking back at me with wide eyes made even larger by the absence of eyebrows and hair. I held onto words spoken earlier: Isabelle would receive the best and most compassionate medical care in the world. But no one could tell Denyse
and me that she would be all right.
I will never forget those early days in the hospital, especially the compassion shown to us by "veteran" parents. While in the postoperative waiting area, a couple whose son was also in surgery, overheard us say the word neuroblastoma. They seized the opportunity to introduce themselves, and then eased our greatest concern. They told us that the chemotherapy really worked for their son.
Next, the father of our hospital roommate brought me coffee and the morning newspaper although we had not yet met. At that time, Isabelle would not sleep unless my wife or I lay in the crib with her, and this parent understood my dilemma. A few weeks later, we met the infamous "pasta lady" who shared the story of her daughter who was successfully treated for neuroblastoma seven years earlier. She returned
every Sunday to provide food and hope to families on the oncology floors.
During her many months of treatment, that included chemotherapy, radiation, surgery, and a stem cell transplant, Isabelle, our 6-year-old son Oliver, Denyse, and I gradually grew accustomed to hospital life. In time, Isabelle allowed Denyse and me to sleep outside her crib as long as we were always in sight. She collected kitchen condiments to decorate her food. She learned to change thermometer caps, start the blood pressure machine, and silence the infusion pump alarm. She renamed hospital
gowns "on tops" as they were to be worn "on top" (and backwards) of her clothes. When Isabelle was well enough, which was more often than not, she sang, danced, and stayed up way past her bedtime without consequence. She came to adore the nurses who encouraged her natural curiosity and playfulness, and her doctor who visited her every night to say good-bye before he left work.
I will never forget the fear, and the long days stretched into long nights spent on 6-and 7-West. However, I will always hold close the memories of my family and I, hunkered down together, united in our common goal to preserve the spirit of life. We forgot the formerly all-consuming problems of ordinary living and learned to live one day, or sometimes just one moment at a time, trying balance hope and helplessness in the face of life-threatening illness. And we did not do it alone. We had the love and support of family, friends, hospital staff, and other families with whom we shared our accommodations and our lives.
--Michael Dodd
Michael and Denyse Dodd and their son, Oliver, began a program called
"Hospital Campers," described below.
"Hospital Campers" offers companionship
to families of children with cancer
Through a program called Hospital Campers held one Sunday each month, Michael and Denyse Dodd, their 8-year old son, Oliver and 3-year old daughter, Isabelle, return to Children's Hospital to offer refreshments and hope to other families.
The Dodds founded the program in February 2002 after Isabelle finished treatment for neuroblastoma. Because Isabelle had required so many lengthy hospital stays, including a month-long stem cell transplant, they eventually referred to those experiences as hospital camping. During this time they were touched by the support given by the many families they met. Inspired by this kindness, they looked for a way they, too, could have a positive impact on families when they need it most.
At "camp," newly diagnosed families have the chance to meet and talk with others who have ended treatment and can ask hopeful questions about reaching this milestone. "They are the light and hope at the end of tunnel," says Kimberly Williams, who arrived cradling her 2-year old son Jermel, who also has neuroblastoma and recently had surgery.
Inpatient families can drop by for a cup of coffee and may bring their child, who can try a craft project or join other activities. A recent gathering featured sock puppets. It is also a welcome break for parents during the weekend stays, which can seem longer without regular week-day activities.
Hospital Campers is supported by the Center for Families, the Betty Ann Blum and Marjorie Blum Pediatric Resource Room at Dana-Farber, and volunteer Paige Anderson. Meeting dates are posted on the floors of 6-west and 7-West as well as in the Jimmy Fund Clinic. For more information, contact Christine Rich at the Center for Families at (617) 355-3994 or e-mail the Dodds at hospital_campers@comcast.net.
--Cyndi MacKinlay
Published in Dana-Farber "Side by Side" Spring 2003.
Published in Dana-Farber "Side by Side" Spring 2003.
Life beyond cancer: One family's story of hope
On July 6, 2001, my wife Denyse and I received the terrible news that our 19-month-old daughter, Isabelle, had a malignant tumor that grew from her spine and was rapidly filling every available space in her abdomen. It was neuroblastoma, a cancer of the nervous tissue. We had come to Children's Hospital from our Cape Cod vacation so that Isabelle could undergo a routine medical procedure to find the cause for a urinary tract infection. We hoped to return to the Cape by midday to go sailing.
Never again will I take an afternoon of sailing, or the health of my children, for granted.
The previously invisible world of childhood cancer emerged for me as I walked the corridor to the oncology unit at Children’s known as 7-West. I glanced at the cartoon characters painted on the windows and the photos of former patients, and without warning, I saw this new world. Through the open door of a patient room, a little person was looking back at me with wide eyes made even larger by the absence of eyebrows and hair. I held onto words spoken earlier: Isabelle would receive the best and most compassionate medical care in the world. But no one could tell Denyse
and me that she would be all right.
I will never forget those early days in the hospital, especially the compassion shown to us by "veteran" parents. While in the postoperative waiting area, a couple whose son was also in surgery, overheard us say the word neuroblastoma. They seized the opportunity to introduce themselves, and then eased our greatest concern. They told us that the chemotherapy really worked for their son.
Next, the father of our hospital roommate brought me coffee and the morning newspaper although we had not yet met. At that time, Isabelle would not sleep unless my wife or I lay in the crib with her, and this parent understood my dilemma. A few weeks later, we met the infamous "pasta lady" who shared the story of her daughter who was successfully treated for neuroblastoma seven years earlier. She returned
every Sunday to provide food and hope to families on the oncology floors.
During her many months of treatment, that included chemotherapy, radiation, surgery, and a stem cell transplant, Isabelle, our 6-year-old son Oliver, Denyse, and I gradually grew accustomed to hospital life. In time, Isabelle allowed Denyse and me to sleep outside her crib as long as we were always in sight. She collected kitchen condiments to decorate her food. She learned to change thermometer caps, start the blood pressure machine, and silence the infusion pump alarm. She renamed hospital
gowns "on tops" as they were to be worn "on top" (and backwards) of her clothes. When Isabelle was well enough, which was more often than not, she sang, danced, and stayed up way past her bedtime without consequence. She came to adore the nurses who encouraged her natural curiosity and playfulness, and her doctor who visited her every night to say good-bye before he left work.
I will never forget the fear, and the long days stretched into long nights spent on 6-and 7-West. However, I will always hold close the memories of my family and I, hunkered down together, united in our common goal to preserve the spirit of life. We forgot the formerly all-consuming problems of ordinary living and learned to live one day, or sometimes just one moment at a time, trying balance hope and helplessness in the face of life-threatening illness. And we did not do it alone. We had the love and support of family, friends, hospital staff, and other families with whom we shared our accommodations and our lives.
--Michael Dodd
Michael and Denyse Dodd and their son, Oliver, began a program called
"Hospital Campers," described below.
"Hospital Campers" offers companionship
to families of children with cancer
Through a program called Hospital Campers held one Sunday each month, Michael and Denyse Dodd, their 8-year old son, Oliver and 3-year old daughter, Isabelle, return to Children's Hospital to offer refreshments and hope to other families.
The Dodds founded the program in February 2002 after Isabelle finished treatment for neuroblastoma. Because Isabelle had required so many lengthy hospital stays, including a month-long stem cell transplant, they eventually referred to those experiences as hospital camping. During this time they were touched by the support given by the many families they met. Inspired by this kindness, they looked for a way they, too, could have a positive impact on families when they need it most.
At "camp," newly diagnosed families have the chance to meet and talk with others who have ended treatment and can ask hopeful questions about reaching this milestone. "They are the light and hope at the end of tunnel," says Kimberly Williams, who arrived cradling her 2-year old son Jermel, who also has neuroblastoma and recently had surgery.
Inpatient families can drop by for a cup of coffee and may bring their child, who can try a craft project or join other activities. A recent gathering featured sock puppets. It is also a welcome break for parents during the weekend stays, which can seem longer without regular week-day activities.
"I remember how frightened I was when Isabelle was first diagnosed, " says Denyse. "I will never forget the day I met Mary Russell in the 7-West hallway. Mary told me about her daughter, Catherine, who had received a bone marrow transplant six years earlier, and was doing fine. That gave me so much hope and strength. Today, one year after Isabelle’s transplant, it is my privilege to be able to give that back."
Hospital Campers is supported by the Center for Families, the Betty Ann Blum and Marjorie Blum Pediatric Resource Room at Dana-Farber, and volunteer Paige Anderson. Meeting dates are posted on the floors of 6-west and 7-West as well as in the Jimmy Fund Clinic. For more information, contact Christine Rich at the Center for Families at (617) 355-3994 or e-mail the Dodds at hospital_campers@comcast.net.
--Cyndi MacKinlay
Published in Dana-Farber "Side by Side" Spring 2003.
Published in Dana-Farber "Side by Side" Spring 2003.
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