| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Common responses from Granparents and what you can do, as a grandparent, to help. |
| ORPHANS OF THE CANCER STORM |
| The grandparents of a child with cancer experience a unique set of emotions in response to their grandchild's illness. They have great concern for the family - for the sick child herself, but also for the child's parent - their own child. The grief they feel runs deep, particularly as a cancer diagnosis contradicts their expectations of the natural life cycle. 'Why not me?" is a question frequently on the mind of the grandparents, as the oldest family members. |
| Disclaimer This information page has been prepared by an individual who does not have medical training. Contributions have been shared by the parents of children diagnosed with retinoblastoma or optic glioma. Orphans of the Cancer Storm cannot make any assurances relating to the validity of medical information contained within this page. The OCS website is intended for information purposes only and should not be used as a guide to diagnosis or treatment. If this information raises any concerns about your child’s condition or care protocol, discuss them with his or her paediatrician, oncologist, or other appropriate medical professional who has knowledge of the case. |
| "My family has always been close, and the relationship my children have with their grandparents is very special. When Josh was diagnosed with his brain tumor, my father found it especially difficult to accept. He would not talk about it with us, but he began to spend every possible moment with our children, as though his presence there could keep our son alive. I know he harbored a lot of fear about Josh, and grieved for his loss right from the day of diagnosis." |
| They may also feel a profound sense of anger and guilt about somehow being responsible for a genetic cancer such as retinoblastoma or optic glioma. Their fear for the child's life may be intensified by the experience of losing older friends to cancer. It is important to differentiate between childhood and adult cancers. Children's cancers require different treatments and often have better prognoses than cancer in older people. |
| "My father-in-law and my husband both have neurofibromatosis. I am aware that my parents-in-law feel a lot of responsibility for their part in our daughter's brain tumor, and they need to be involved in her care. I think it makes them feel a little less guilty, and reassures them that she is doing ok." "My mother had recently died from breast cancer. To my father, the word 'cancer' meant only one thing: that he would lose his grandson also. His negativity dragged us down in the early days, and we had to constantly remind ourselves that, In his generation, children rarely survived cancer. It took a long time for him to realise that the odds were very much in favour of our son." |
| The child's diagnosis of a cancer comes as a major blow to the majority of grandparents, and parents often agonise over breaking the news to them. |
| "My mother was with us when we found out that Rachel had cancer. It was an awful time. She wanted so much to be able to say or do something that would help ease our pain. Watching her struggle with the news was heartbreaking, and we dreaded having to tell my in-laws." |
| Research has identified that grandparents responding to the diagnosis can be divided into two main categories: the Oaks and the Bonsais. They may respond with great wisdom, sensitivity and grace born from substantial life experience, or they may become demanding and unreliable or disappear altogether. Many grandparents provide immense practical, financial and emotional support, particularly those who are retired. They often look after siblings and ensure the household is in order, help with transport and financial demands, allowing the parents to care for their ill child or keep a job. Their solid commitment to the family reinforces stability during the seismic activity of the cancer diagnosis and periods of intensive treatment. |
| "My husband's parents flew in from Florida to be with us in Minnesota. They stayed with us for eight months whilst our son received treatment. They looked after our other children, and helped keep our family together in every way possible." "When we were facing the loss of our home, my own grandparents sold their second home to help pay our mortgage. They adore their great-grandchildren, and wanted to do anything they could to help us." |
| For other families, the grandparents' support is not such a positive experience. The age and/or health of grandparents may prevent them from giving as they would like, whilst some are completely unable to cope with the magnitude of such a crisis and become emotionally overwhelmed. This places an extra burden on the sick child's parents as they try to support their parents as well. |
| "My wife's mother is a very emotional woman at the best of times. After our son's diagnosis, she repeatedly offered to come and help with the children. We knew she meant well, but felt that her constant tearfulness and negativity would not be good for our family, and told her we had things covered at our end." "My parents almost completely disappeared for a year. They called two or three times, but adopted a silence towards the cancer which was utterly bewildering and frustrating. I remember the second time they called, I tried to talk about our son, and my father immediately began to speak about a ball game he'd watched, that he thought our boys would have liked to see. They didn't want to hear about the cancer at all." |
| Sadly, the child's illness may provide an opportunity for grandparents to criticise the way their grandchildren are being raised, even blame the parents for the cancer, or renew pre-existing conflicts with their own adult child. In turn, this can distort their understanding of the family's needs. |
| "When our daughter was diagnosed, my husband's father said we shouldn't have had our own children because of the cancer risks. He never lets us forget that she inherited the condition from my husband, and it causes a lot of conflict." |
| Sincerely believing it may help, some grandparents try to take charge of the situation, but this invariably leads to damaging conflict and stress on all sides. Being critical of the parents' medical decisions about doctors, hospitals, or care protocol is likely to be deeply hurtful, and will deplete the family's already stressed coping resources. |
| "When Connor's tumor grew back, my parents kept saying it was because we hadn't done radiation first, and that it was our fault. They didn't seem to understand the risks of radiotherapy for such young children, and we even began to question our own decisions regarding the initial treatment. It was very difficult to live with those comments." |
| As a Grandparent, there is plenty you can do to help. Be aware that the feelings of grief and concern for your grandchild and her parents are perfectly natural, and that it is important to own them. Try to share those feelings with another person, so that they don't become overwhelming, or find a physical outlet for your emotions. In doing so, you will avoid creating an extra burden for your grandchild's parents as they worry about you. Respect your own child's style of parenting and discipline, and try not to alter it dramatically when caring for the grandchild(ren). Remember that children thrive on routine and familiarity, especially in time of disruption such as this. Always consider the welfare of the child and her parents to be paramount. Think carefully about whether your comments and actions are likely to be constructive and encouraging or hurtful and damaging. You may have strong opinions, but this is probably not the time to share them. Try to avoid situations in which you begin to feel that your child is taking advantage of your role as Grandparent. Ensure that your own health is not being adversely affected in supporting the family, and talk to your grandchild's family if you are concerned. Use the advice and suggestions on pages throughout this section as a guide to ways in which you can actively support your grandchild and her family through this traumatic time. |
