| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Emotional Support. |
| ORPHANS OF THE CANCER STORM |
The immediate family will often establish their own strategies for communicating information about their child's health and treatment, their needs and requests. For example, they may need to let extended family members and friends know about a hospitalisation, or that their child is too tired, or her immune system is not strong enough for her to receive visitors at present. Be aware of the strategy they have implemented, respect and use it. |
| 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. |
| "During the initial diagnosis and treatment, we didn't appreciate friends and family calling night and day. We found it helpful to screen calls." "Most of our friends have been fantastic, but two people never used the telephone news line we set up. They always called on our main family line, sometimes late at night, and often didn't understand that we just could not face a conversation. In the end, we had to ask them to stop calling us. We did feel guilty, because we knew they were just trying to be friends, but talking to them was too draining." "During chemo, we asked people to telephone before visiting, not only because Christopher's counts were often low, but also because sometimes we just needed time out, and visits (though well meant) were very tiring on us all. Knowing that people respected our wishes, and took time to find out how Christopher was, helped us immensely." |
| "We devised a telephone tree with friends, and asked them to make written notes of our updates, so that the facts were always passed on correctly. For the most part, people were great, and almost always contacted the three people we had originally asked them to. Sometimes information was slightly off, but we realised that usually happened when we hadn't explained something properly, and our friends gave their own interpretation. I would say to people doing this sort of thing for friends, that if you don't understand something you are being asked to convey to others, just ask the parents first." |
| Gather information Go to support groups Share survivor stories Donate blood Decorate the child's room Choose appropriate gifts Give the parents time-out Support the supporters |
| The family may set up a telephone tree, which enables a delegated family member to pass on information to another person who can then relay it to another, and so on. If this is the case, be sure of the people the family is asking you to contact, and keep them informed, and try not to embellish the details, as this can often distort the facts. |
| "Our website had a visitor counter on it, and it was so encouraging to see the numbers in increase. It let us know that people were checking in with us to find out how we were." |
| If the family posts updates on a website or on their answer-phone, check the source regularly for information. |
Don't try to minimise or ignore what is happening, or avoid the family because you don't know what to say to them. Now, more than ever, they need your unconditional friendship and support. Communication is especially valued by the family when the child is home-bound due to treatment and the risks of low blood counts, when they are experiencing a protracted hospital admission, or have to travel away from home for extended periods. Knowing they are being remembered gives many families a great boost. |
| "We are keeping all get well cards for Kati to read later." |
| Send e-cards and emails if the family has internet access, and if the child has a website, sign the quest book to let the family know you have visited. |
Talking about things unrelated to cancer will help keep the family in touch with the outside world. It is often a welcome relief, and allows for a little escapism and normality. |
| "Sometimes I think friends and family do not realize the seriousness of the problem. Recently our pastor's wife told me I worry too much about Kati!" "My family are so sure she will be alright, that the tumor will just disappear. It is frustrating when we cannot make them realize the fears going through my head of blindness, development delays, cognitive problems, death." "We appreciated people who just shared silence with us, communicating with a friendly hug or the loving squeeze of a hand." "I truly appreciated people who asked 'how are you', listened to the standard 'ok' reply, and then asked again 'yes, but how are you really?' I knew then that they were totally there with me, actively listening and empathising." " I think it's great to be a good LISTENER as I always felt like I needed someone to talk to." |
Be sensitive about telephoning the parents during a hospitalisation. If you are calling the hospital room or ward number, be aware that the parent's end of your conversation will be overhead by the patient, and they may not wish to discuss certain things in the child's presence. |
Acknowledge the enormity of childhood cancer, and what it means to the family. Do not try to diminish what is going on in their lives. Be aware of individual family members' emotional and physical state. Parents and children - both the sick child and/or siblings - may wish to talk about what they are going through; but sometimes they simply need a hug or a hand to hold. Don't press questions if the family does not want to talk, but take time to listen if they do wish to discuss their child's condition or their own feelings. |
| "We opted for enucleation and then regular EUAs. Following the enucleation, many people considered things 'back to normal'." "People should recognize how consuming and agonizing this can be. How painful. They need to acknowledge the pain and not minimize it. Not think that everything can be the same again. " "At the beginning everyone goes through it with you, and then after time, when things calm down, you are left to your own devices by most people, except a few immediate family and friends. People do not know what you go through every day, and I often get 'he's ok now' or 'he can see now', but he has been left scarred and partially sighted and experiences difficulties everyday. I think it is then you need support still." |
| Realise that childhood cancer is never "over". It changes the family forever. There will always be an element of worry for parents, no matter how small, and many families face emotional, physical and financial challenges for years after their child's treatment has ended. Even if a child's condition has remained stable for many months or years, there is a possibility that an optic glioma may grow back, or that a child with retinoblastoma may develop secondary cancers. Remember that the absence of treatment does not mean the child is now ok, and that "remission" does not mean the same as "cure". Regular brain scans, exams under anaesthetic and other tests often cause great anxiety and stress, whilst physical scars, artificial eyes and visual impairments serve as a constant reminder of the cancer. There are also many other issues for families to deal with, such as visual impairment and treatment late effects, access to education and health care, the adult child's ability to have her own healthy babies, etc. Don't belittle the battles families still face, or imply that they worry too much. Don't suggest that they can now forget about the cancer because the child has ended treatment and appears to be well. They will continue to need your support and friendship, even after the immediate crisis of treatment is ended. |
| "We have four other children who were aged from 3 to 12 at the time of Tim's diagnosis. They are often confused, frightened and lonely, and frequently find themselves with friends whilst we are at the hospital with Timmy. It helps them enormously to be able to talk about what they are feeling." "For almost a year, our elderly neighbor came by nearly every afternoon to help our two girls with their schoolwork. He made them feel special and important because he would come to see them, not their little brother. They didn't talk much about the cancer during those visits, but the time they spent with our neighbor was real therapy, and I feel sure it also helped them maintain their grades for school." |
If you ask how the sick child is, remember to ask about the siblings also. They often suffer greatly in silence, and the family will appreciate that they are being remembered too. Ask them how their clubs or schoolwork is going - you could even offer help with homework. Be aware of their feelings and ability to cope. Their lives have been turned upside-down, their sibling is sick and they may be too young to understand what is happening. The cancer means their parents are pre-occupied with caring for the sick child, yet this is a time when they too need extra-special care and attention. |
| "Just knowing there are people praying for us and Kati. Prayer is a wonderful thing. We try so hard to put and leave Kati in God's hands. He is the only one who can care for her." "My sister-in-law was at a church meeting when we called her to say that Josh had been diagnosed with cancer. She shared our news with the others, and they held a prayer vigil for us right there and then. That spontaneous show of support helped us so much in the immediate hours and days after diagnosis." "I think the thing that has helped me the most is that complete strangers are willing to pray for my son and our family. My husband and I are not very religious but to have others praying for us meant, and still means, a lot." "Our niece (who lives 600miles away) and her friends met to pray every week throughout Caleb's treatment. We only discovered this a few months later when we met their teacher during a visit to my sister's home. She said 'it's so good to know he is doing well. I watched the girls sit together during every Wednesday recess and pray with all their hearts for him'. We were extremely moved by their love and dedication to our son." |
If the family has a faith, contact the relevant religious leaders at their place of worship. If the child's family expresses a wish, arrange for the leaders or members of the faith family to visit them at home or in the hospital. You could also organise a prayer service or vigil to show the family support. |
| "Hugs are so good. We need them every day." "Sometimes I just need a friend to put her arms around me and hold me, especially when I am in the hospital with my daughter, so far from home." "Give them lots of love and security from your strength." |
There are some experiences which simply break the confines of our vocabulary, and we struggle to communicate our feelings to one another. Hugs do not cost money, yet they can be the greatest source of comfort in difficult times. They convey thoughts and feelings which often do not work so well with words, and they are a spontaneous display of solidarity. Give them freely - they will be much appreciated. |
| "We have a friend who often comes only for ten minutes at a time, but she might come two or three times in one day. That is so much better for us, because we cope much better with small bite size visits, and we nearly always have fun - even when our son is feeling sick." "Some of our friends don't understand how tired we all get. People are well-meaning, but long visits often leave us exhausted because we feel obliged to entertain. I think people believe that short visits will give the impression that they don't care, or are scared to be near such a sick child, but it is quite the opposite. A visit, however brief, gives us such encouragement, and shorter ones tend to be the most enjoyable." |
When you visit the family at home or in hospital, keep it brief and buoyant. Long visits may distress the sick child, but they will also overburden an exhausted and stressed parent. If they ask you to leave, try to understand their reasons, and don't be offended. The thoughtfulness of your visit will invariably lift them more than you can know. |
| "One of our friends is a puppeteer, and he brings some of his puppets on each visit, and puts on a little show for the kids. He uses lots of silly voices and It's great fun." "My brother-in-law sometimes wears a clown costume when he visits, and the laughter is like music when he hoots his big red nose." "Make 'em laugh. Our daughter's counts were really low one time, and the doctor suggested we try to make her laugh. All our friends who called us at the hospital had to do say a joke, and we watched funny movies and played silly games for hours. The next day her counts had jumped right up, and we went home by the evening!" |
Laughter has been clinically proven to aid physical recovery and maintain a positive attitude. Bearing this in mind, consider sending amusing messages, wear a funny costume when visiting the child, or share a good joke on arrival, if you think it is fitting. |
| "A few days after our little boy was diagnosed with his brain tumour, a friend came to visit and gave us a whole bunch of pamphlets and internet print-outs about different organisations which could help us if and when we needed it. That was so useful, and it touched us that she had taken the time to find out these things. We just didn't have energy or time to do it ourselves, and might not have known about support organisations for some time if she hadn't done the work for us." "We were so consumed with Hannah and our other children that we didn't think of looking beyond the hospital for information or support. It was really only after the initial treatment ended that we began to research, and found things we wish we'd known earlier. When the oncologist suggested temodar, we asked my brother to help us look for information, as he has internet access. That has been really helpful because we were able to ask the doctor specific questions based on the research." |
Be sensitive to the family's feelings, but if you think they will be receptive, contact your national cancer information/support service, a childhood cancer organisation or the family's hospital to find out what support groups or services are available locally for parents and/or siblings of children with cancer. Ask if the family would appreciate enrolment with one of these organisations, and do it for them if the answer is yes. Look in the Resource Directories on this site for general support services. |
| "My husband isn't one for talking, but I really needed somewhere to go to share with other parents. I had never been to a support group before, and was a little nervous, so I asked a friend to come with me. She only came a few times, until I felt more comfortable with it, but I am really grateful that she did, and I think it also helped her to understand a little more of what we go through as parents." |
If they wish to go to available groups, offer to take the children or their parents, or attend with them for moral support. The ability to share experiences with people who understand is a huge source of emotional support for the family, and relationships with support group members frequently become as strong and important as blood relatives. |
| "A co-worker found the web site of a little girl in Australia who had also lost an eye to retinoblastoma. She saved the pages onto disk and brought it over for me to see. I hadn't met any other families going through this at the time, and so it was a real boost to hear someone else's story, and to know their daughter was doing great, in spite of the cancer." "Friends often tell us stories of other children surviving cancer, and we are always encouraged by them, but their experiences sometimes seem worlds apart from our own. We are encouraged most when we hear about children with optic glioma who are doing well." |
If you know of any positive survivor stories relating to the type of cancer your friend's child is battling, share them with the family. Be aware that different cancers have different treatments and survival rates, so try to ensure the story is relevant to the family's experience. |
| "When our son was having chemo, many of our friends donated blood in his name. Not only did this show they were thinking of us, but it also helped financially because he needed some transfusions, and we got them for free because of the number of donations our friends made." "Transfusions saved our daughter's life. We were grateful that our friends recognized the significance of this by donating blood." |
Your friend's sick child may not necessarily receive your donation, but it will replenish the Blood Bank stock, which is significantly used by children with cancer. Consider registering yourself as a bone marrow donor at the same time. Retinoblastoma and Optic Glioma are not treated with BM transplants, but the family may be encouraged to know that you are doing things to help other children with cancer. Many blood banks in the US will also allow a free unit of blood or blood products when a certain number of units is donated in the child's name - regardless of blood type. |
| "My co-workers sent a box of decorations for us when we were in hospital over July 4th. We had colored streamers, flags, hats and big stars to put up. They also sent us lots of treats, and we had a picnic on a big blanket on the floor. Our kids had been real disappointed that we couldn't be home, but in the evening, as our little guy was having his chemo, he said it was the best day he'd had in ages." "Our daughter loves bright colored flowers, and hated not being able to go outside when she was ill. I mentioned this to a friend, and the next time we were in hospital, she and her co-workers brought us boxes of flamboyant silk flowers and artificial broad leafed plants. My daughter and I made a door sign together saying 'Georgia's jungle', and everyone who came in commented about how pretty the room was. It made her feel very special, and like she was not in hospital at all." |
Consider how you can cheer up the child's room and thus boost her spirits when she is hospitalised. Send her balloons or posters, bright and amusing get-well cards, artificial flowers/plants, fun toys or books. Check for hospital or ward restriction beforehand to avoid disappointment. For example, some paediatric facilities will only allow Mylar® balloons as rubber balloons pose a choking hazard to young children. Many oncology wards also do not allow cut flowers or plants as they are an infection control issue. |
| "When our 10 year old son was having chemo for the second time, he developed a habit of colouring in the boxes of squared paper with different patterns of colour. He said it helped him to unwind and forget about the treatments. He loved it when people gave him a new pad of squared paper." "One of our friends bought Rachel two feely bags, one with 10 sets of matching material tiles, the other with 10 sets of material squares that are black and white on one side and brightly colored on the other. They also have different fillings. Rachel has hours of fun playing with the bags. They also helped to develop her sense of touch as her sight is failing. They are probably the best gifts she's had so far." "You [OCS owner] gave Sena Dino from the UK Rb Society and it has helped Sena more than I can put into words. She loves it that Dino has a 'hard eye' just like hers." |
When choosing a gift, remember that the attention span of a sick child is often shortened by the combined effects of illness and treatment. In addition to this, illness frequently causes children - especially younger children - to regress to former abilities and behaviours. They are likely to prefer familiarity and undemanding play, and may choose to play with toys or look at books which have been long since packed away. Also, certain treatments for Rb and OG, and the cancer itself, frequently have a (sometimes dramatic) negative impact on vision, and though this may only be temporary, it is likely to have some bearing on the child's ability to participate in play which relies on sight. So, with this knowledge in mind, keep things simple and usable. Good options include soft toys, easily handled puzzles, uncomplicated games - especially "feely games", picture books, simple colouring-in and crafts, as well as videos, DVDs, music CDs or age-appropriate computer games. |
| "I was so afraid to ever leave my son at first when he was in hospital, but I realized that being with him 24/7 is just not humanly possible. One of the other mums on our floor offered to sit with him once whilst I spoke to the doctor, and that experience gave me the confidence to let go a little. Now I am glad when people offer to look after him for a few minutes or a few hours whilst I go for a shower, take a nap or just walk away some of my stress." "During ten weeks of radiotherapy, Abby suffered severe burns and was in a lot of pain towards the end. It seemed to be worse at night, and I would be up comforting her very often. This was exhausting, especially when also dealing with a demanding three-year-old during the day. One of my friends offered to have both girls for two hours every afternoon, so that I could catch up on sleep. It was a real blessing." "Ask if the parents need a break when the child is feeling good. No matter how much we love our child, we need occasional breaks or risk going crazy." |
Offering to look after the sick child in the hospital or at home will give the parents a welcome break. They will be able to take a walk, speak with the doctor, run errands, go for some relaxation therapy, have dinner as a couple, spend quality time with their other children, wash their hair or just have a good sleep, and the time out can be very refreshing and revitalising for both parent and child |
| "My husband's company sends its employees first class whenever they travel on business. After our daughter was diagnosed, the people in his department elected to travel coach, and the company donated the difference to a fund which paid for my mother to come and stay from Canada for three months. Having her with us helped so much as we have four children." |
If family members living farther away have time to help, but their transport costs are high, you could donate frequent flyer miles or share the expenses to help them travel to the child's family. |
| Stay in regular contact with the family by making visits and telephone calls, sending cards and letters, photographs and video postcards. If a parent has left work to care for the sick child, colleagues can show support by sending cards or taped messages of encouragement. |
| "I found the cards and letters to be very helpful. It was always so uplifting to go to the mailbox each day, and read a sweet card from someone who was thinking of our little angel. These cards also helped on days when we were really down. We could read through the notes and realize how many people were praying for Madison; just knowing people cared helped tremendously." |
