Carolynne St. Pierre wanted her children to remember her. She and her husband decided that one way to ensure that was to make public her struggle to put off the day when a rare form of liver cancer claimed her life.
The last installment of reporter Chelsea Conaboy's series about one family's fight for time appeared in the Monitor earlier this month. The story was accompanied by poignant photos by Preston Gannaway that some people found disturbing. In the most powerful picture, Elijah, St. Pierre's 4-year-old son, hugged his dead mother while his 12-year-old brother Brian held her hand.
About one quarter of all adults battling cancer are parents of children younger than 18. St. Pierre had three such children, Elijah, Brian and 14-year-old Melissa.
The Monitor stories were painful to read, the photos heartbreaking. They are a gift from Carolynne St. Pierre and her family that took great courage to give.
The St. Pierres, like all families dealing with serious illness, faced financial problems and the miserable task of persuading insurers to cover a given treatment or procedure. Although the St. Pierres had to sell prize possessions, they didn't complain.
What they did wish they had had was easier access to group counseling for the children of parents with cancer. The family got help from many quarters, but finding it was not always easy.
There are guidelines but no rules for people trying to help children cope with a parent's illness and deal with grief. Every child and relationship is different. One child may want to be near an ill parent constantly, but his or her identical twin might find it difficult even to be in the room, Concord family counselor Tracey Strombom said.
The counseling staff at Massachusetts General Hospital Cancer Center recommends that children of cancer victims be urged to live as normally as possible and to be given all age-appropriate information about the parent's disease and prognosis. Children should be encouraged to talk about their feelings and prompted with leading questions but never pestered to talk before they're ready.
Above all, the children of a parent with a grim prognosis should know what will become of them if the remaining parent dies. The love the departing parent wants to convey and other important messages should be communicated over and over until the parent is positive the message has been absorbed.
Young children do not understand the permanence of death. Although it is a tough experience, seeing the parent's body will prove healing, not scarring, if a child is properly prepared for it.
No book or list of suggestions can make up for a lack of professional counseling and advice. There are therapists in the area trained to help families in the St. Pierres' situation. But finding the right one is not always easy.
Referrals from nurses, social workers and other caregivers help, but for now the best clearinghouse is an online service offered by New Hampshire Oncology and Hematology. Its website, innisfreecancerhelp.org., makes it easy to find counselors by region and specialty.
Children are resilient, but they need the strongest possible support system when a parent is facing death. Parents trying to help their children cope with death shouldn't have to struggle to find sound advice.