| Offer ideas of what could help: You could add some ideas of how people can help - such as through prayer or sending your child encouraging cards. Your own feelings of shock, anxiety, fear and impotence will also be felt by friends and family as they hear the news. People will inevitably want to help, but may not know what to do or say. Giving them prompts of how they can support you will be immensely useful at this time. You may want to include a link to the on this site which addresses the issue in detail. |
| "The year before Adam was diagnosed, I had led a school ski trip, and devised a parents' telephone network through which information could be shared in the event of an emergency. We decided to use a similar network to pass information on to our family and friends. Occasionally, that information became distorted, but people were generally very good at making notes and keeping the facts straight." |
| "I couldn't bare to tell people what Charlie was going through. Witnessing her struggle first hand was enough. I could not bring myself to share the reality with others. But because I didn't explain so much, people constantly asked me a lot of difficult, repetitive questions. Later, I learnt to share information, and found my friends were more supportive and understanding as a result." "We just said 'Sena has bilateral retinoblastoma; eye cancer in both eyes. She starts chemotherapy on Monday'." "We gave a very brief description of eye cancer as it was quite complex at the time for us and for them. We also tried not to worry close family, because at the beginning the word 'Cancer' just meant fatal." "We told everyone that it was eye cancer and was a rare pediatric cancer. I wrote a note to the parents of my son's pre-school classmates encouraging them to get eye exams and explaining the disease. We did not give too many details other than to describe the symptoms." "I had bilateral RB as an infant. Having had the disease myself made it easier to explain to our friends about what we were dealing with. However, sharing information with friends regarding exams under anesthesia, plaque therapy, and chemotherapy was too much information for some people to understand. I feel this way because some friends gave us opinions on which they had no knowledge, with respect to the treatment of the disease. We felt we were doing the best we could to treat our daughter's cancer, and we did not appreciate opinions from those who weren't dealing with it themselves." "We have been telling people pretty much everything. Our families know exactly what we know as we learn it. Friends, when they ask. It almost feels like people are now afraid of us." "I seemed to be constantly writing or talking in those early days. I wanted people to hear about this thing which had torn our lives apart, to know the strange words which were seeping into my vocabulary, to understand what was happening to us. It was good therapy for me at the time. Now my reports tend to be shorter, or more about 'us' than 'it'." |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Communicating with family and friends. |
| ORPHANS OF THE CANCER STORM |
| 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. |
| Copyright © 2004, Orphans of the Cancer Storm. All Rights Reserved. |
| “We immediately called close family members, and they were all at our side the same day. Everyone helped search for the best doctors and institutions. Many helped us prepare for our first consultations and also accompanied us. They kept us focused, took notes and later could recall information that we couldn't.“ "Looking back on our experience, I feel notifying our friends was not in our best interest. Some of our friends wanted too many of the details which were difficult to talk about, especially after a long day at the hospital. On the other hand, notifying our family was quite helpful. For example, my mother in law stayed with us for one month, in order to help with our older son. She also took a load off of our shoulders by helping us deal with cooking and cleaning, since we were so focused on our daughter." "As my husband had bilateral retinoblastoma, we were aware of the risks and had discussed them openly with friends. When our girls were diagnosed, although we were devastated, we felt more freely able to discuss the situation with friends. I think it was easier to talk to friends than family because they were more detached, and my husband's mother felt a lot of guilt." "Initially Close family was contacted via phone and at the time I was quite happy at keeping it close, but word gets around." |
| "I wanted to tell everyone myself. I thought that if I heard the words often enough, I would begin to believe them. The conversations were torture at first, but I found them oddly therapeutic after a while. Once we began treatment, I let a friend take over the job of communicating our news to everyone." "We called everyone personally so that the information wasn't exaggerated. We wanted everyone praying and checking their children's eyes as well." "I called my mother first, and she offered to contact other members of our family so that we didn't have to. I thanked her, but declined the offer - a decision I regretted deeply after four hours of tearful, painful conversations, regurgitating the same awful news. After that, my mother kept people updated, and I will be forever grateful for that support." |
| "My husband was away on business the day of our son's diagnosis. We spoke on the telephone and he arranged to come home right away. He couldn't get a flight for three hours though, and spent the time writing emails to every friend he could reach online, explaining our news and asking for prayer. It really helped him to stay calm in those initial hours, and proved to be a wonderful way of informing people." |
| "It took us some time to realise that we had to find a way to communicate information to people effectively. We had so many telephone calls and doorstep visits from people wanting news of Katie that we were quite overwhelmed. Eventually, we sat down and discussed the situation. After that, we asked people to check our special "news-line" for updates. "I enjoy designing web pages, and we already had an established family site. When we first told people about Bekah, we asked them to refer to our site for current details of her progress. It worked well, and took a lot of pressure off us." |
| Explain how people can stay in touch: If you can settle on a strategy for keeping people up-to-date on your child's progress, explain this to all whom you contact, and ask that they use this approach to keep in touch with your news. Consider sharing contact information if you have to travel away from home for treatment, or your child has been admitted to hospital, as people will want to stay in touch. However, remember that if you give your child's hospital room/ward telephone number, your child will be able to hear your end of any conversations. You may also want to remind people that your mobile phone will be switched off whilst you are in the hospital, according to the rules of that particular facility. |
| "People were so generous. They would do things for us without asking, which was wonderfully kind, but sometimes a little unhelpful, despite the intention. We once ended up with so many prepared meals that we ran out of storage space and sent them to the local homeless shelter. After that, we realized that we would need to guide people so that their kindness and enthusiastic support was directed to areas of genuine need on our part." "We produced a list of ways in which people could help, and posted it on our web site. It was also pinned to the church notice board, which really helped." |
| "Our family is very widely scattered, and we have used email to stay in touch for several years. So it feels natural for us to use our email to let people know how William is doing. We usually send a weekly update, unless there is something specific going on, for which we would like particular prayer and support." |
| "My daughter's Godparents offered to put a web site together for us. It is really beautiful and gives us much comfort." "Maintaining our daughter's web site is very therapeutic. It is a project which involves the whole family as our children help to choose the photos and graphics we use, and we all contribute to the journal entries." |
| "I have a web site, and update it following each EUA or change in Sena's progress. I also send out email updates to family and friends with more specifics regarding each EUA." "Our church created a lovely page for Caleb on their web site. It was always up to date with specific prayer requests, our notes of thanks, and instructions on how to contact us. It also had a link to the Candlelighters Association and Childhood Brain Tumor Foundation. We asked the church to remove the page once treatment was over, but we felt it served its purpose well, and we are thankful for the show of solidarity it presented us with." |
| "We set up a second telephone line about a month in from Sara's diagnosis, and explained to our friends that the 'phone number would only be used for them to hear updates and leave messages. They were mostly very happy to use it. Our children called it the 'Saraphone'." "We save all the [answer-machine] audio cassettes and store them in a box full of 'cancer memorabilia' which we intend Rachel to have when she is old enough to understand about the value of its contents." "We update our out-going message every day. We can even access the controls remotely, and update from Tim's hospital bedside if need be. That way, we don't constantly have to let people know of a new telephone number when we are moved." |
| "One of my closest friends went into a complete panic when she heard that our baby was sick. She became distant and unpredictable. Eventually, we lost touch altogether. The loss of our friendship still saddens me. I know there was no malice in her actions, she just didn't know how to cope with our new existence." "We definitely do not talk to friends as much, nor go out like we used to. They are still there in the background. It is depressing when you feel you have no one to talk to. Family members are always available, but grandparents, and such do not want to hear our fears." "One of the families on our street never came to visit after Alex was diagnosed. They would keep their children away from our own, as if fearing for their safety. It was a horrible experience, especially as the children had previously been friends." |
| "We did not lose friends after our daughter's diagnosis. It was just the opposite. We were given much needed support from friends." "We actually gained new friends. A lot of people we didn't know would come up and introduce themselves as a friend of so-and-so, saying they had heard on the grapevine about our children having cancer, and could they do anything to help." "Right from the start, all our friends have done everything they can to be as supportive as possible. Often, they don't understand what is going on, and sometimes say or do hurtful or unhelpful things, but that is not intentional. Their mere presence in our lives is such a blessing, and everything they do for us beyond that is a true gift. We keep them regularly informed, and they respond with much kindness and giving." |
