| "The A B C of Rb" An information page for newly diagnosed families. (an Orphans of the Cancer Storm resource) This is the printer friently version of a page from the Orphans of the Cancer Storm (OCS) website. If you did not came to this page from OCS, and would like to investigate the website further, please go to: The diagnosis of childhood cancer is perhaps the hardest battle you willl ever have to face as a parent. This page has been put together to help those in the very early days, perhaps even hours, after diagnosis of retinoblastoma, to help walk with you though some of the toughest moments, and to give you some hints and tips that will hopefully help to ease the burden just a little. Maybe even give you sign posts to some people who are already on the pathway through that “childhood cancer valley” who may well become the best friends you could ever hope for. So What Is Retinoblastoma? Retinoblastoma (RB) is a rare, fast growing childhood eye cancer. It may affect one or both eyes, and typically develops before 5 years of age. Some children are born with tumours. Incidence Between 40-50 children are newly diagnosed each year in the UK, 300-350 in the USA, and 25-30 in Canada. Countries with high birth rates, like India, diagnose more than 1500 children with retinoblastoma each year. Symptoms The most easily recognisable sign is an abnormal appearance of the pupil, which reflects light as a white reflex (leukocoria), like a cat's eye. This is usually only visible in low artificial lighting or in photographs where a flash has been used (such as in the photograph at the top of this page). Occasionally a squint or crossed eyes can be the first sign of retinoblastoma. Treatment Current treatments include laser, cryotherapy (freezing the tumour), systemic and localised chemotherapy, brachytherapy (radioactive plaque sewn directly onto the tumour), radiotherapy and enucleation (surgical removal of the eye). Prognosis Without early intervention, the cancer will quickly spread beyond the eye, travelling directly to the brain, or invading the bone marrow. Untreated retinoblastoma is fatal. However, with early diagnosis and appropriate treatment, nine out of ten children with retinoblastoma can be cured today, creating one of the highest cure rates, and best success stories of all childhood cancers. Go to the links below for a more in depth explanation of Rb. United Kingdom Childhood Eye Cancer Trust - www.chect.org.uk Website of Dr David Abramson MD, of Memorial Sloan Kettering Cancer Centre in New York. - www.retinoblastoma.org A more in depth explanation of Rb within the OCS website. www.orphancancer.org/ORbIT/rboverview.html. A more in depth explanation of leukocoria (the white eye), within the OCS website - www.orphancancer.org/ORbIT/leukocoria.html. -------------- Some common responses to a diagonsis of Rb, and childhood cancer in general. The diagnosis of retinoblastoma is like an earthquake, generating a whole field of siesimic activity. At the epicentre will be the family - the parents, child who has the diagnosis, and his or her siblings, However, the shockwaves will be felt by extended family members and close friends, even neighbours, work colleagues and aquaintancs. Parents often become physically ill in the early days immediately after the diagnosis of their child's cancer. This isn't surprising, given that many children are immediately admitted to hospital for chemotherapy, or other treatment. If this is your experience, try your best to eat regular, nutritious meals. Ask friends to bring ready prepared dishes in for you to eat. Take regular breaks from your child's room and get some fresh air. Hard as this will be for you to do emotionally at this stage, you need to help yourself to stay well, because your child needs you to be well - and you need you to be well. In the days, weeks and moths after diagnosis, you are likely to encounter an intense range of emotions, from denial, amger, helplessness, fear and guilt, to deep love, courage, compassion and hope. It will help you to recognise and understand these feelings, and how to respond to them, so that you can effictively diffuse any diffcult situations which may arise from them. I am currently working on a section within the OCS website to address this subject in more depth. -------------- A Suggested list of things to take to the hospital. A Suggested list of things to take, and think of, for your first visits to the hospital. Here are some tips which I hope will help you in planning for the first visits to the clinic. Please email me if you have an idea you'd like me to add. A tape recorder - in the early days, and even later on, it's very difficult to remember what the doctor is saying to you. Recording the converstation means you can document the meeting without missing something important. You can also play it back when you get home, if you forget something later. Remember to ask for the doctor's permission first - s/he will usually be fine about your recording the conversation. A Friend - You need to be an advocate for your child, and it will help you to have an extra pair of ears when the doctor is talking to you. Some decisions whill have to be made fairly promptly, and it will be good for you to have some emotional suppot, so take along someone you know you can rely on to support you. Don't take a friend you will end up having to support yourself. Food - It will probably be a long day, and you're likely to eat far more healthily if you take food from home, than if you buy food bought at the hospital. If will probably be cheaper too. This will be an excellent time to accept offers of help from freinds. If people ask "is there anything I can do to hep?", tell them "yes please, prepare us some healthy packed lunches for the hospital". Dry Soap / Anti bacterial wipes - get used to having this around if your child requires chemo! Some toys - There will probably be quite a long wait. If your child is going to have a general anaesthesia, remember to not bring toys or books that have an association with food, as you want to be diverting attention AWAY from thoughts of food and drink. If you are attending a children's hospital, bare in mind that they will have plenty of resources to occupy your child, so just bring one or two toys for familiarity. EMLA Cream - special cream put on the surface of the skin to numb it before a needle stick, so your child does not feel the pain. Bubbles - blowing bubbles helps maintain good breathing patterns during needle sticks. It's a good therapeutic trick to remember and practice at home, and you can even use this approach with babies. It doesn't always work in practice, but it's worth a try, and the bubbles are handy to have in your purse all the same. Have your child look the other way and start blowing before the needle stick, good, long regular blows. Don't look over at the needle, or you'll make him nervous. Just look steadily at the bubbles, and comment about how bretty they are. Obviously, this only works if the nurse/doctor is co-operative, so consult with them first. Ask to speak with a child life/play specialist, if the hospital has one on service. This person works with children to help them understand and cope with medical procdedures, and will be an invaluable resource and source of support for you both.. A good book - it's usually a nervous wait for mum and dad. Having something to absorb your mind will help you stay calm. Change of clothes - always good to have an emergeny set. A bar of chocolate - or whatever is your comfort zone (for when your child has been taken off to the exam). Heat/cool pad - for your neck or back on long clinic days. I mean the kind with wheat inside that can be heated in the microwave. or cooled in water. It's great to heat you up on cold days and to cool you down on hot days - if you have one, take it! Most hospitals now have a microwave you can use to heat up such an item. Some top tips - Don't be aftaid to ask for a second opinion before embarking on treatment. - Ask lots of questions - you are your child's best advocate. - Take time to take care of yourself - you are no good to your child if you are sick, and your children need you now more than ever before. - If you have other children, try to set aside time for them each week from the outset. Cancer has a way of "taking over", and pushing siblings out. Make sure they know they are important too, and talk to them about what is going on, in language they will understand. Have hope - you can get through this - all of you! -------------- Some useful links within the OCS website. OCS (Orphans of the Cancer Storm) is an online resource dedicated to helping families of children with retinoblastoma, survivors, and those families who have lost thier children to the cancer. The website was founded, and is entirely maintained by bilateral Rb survivor, Abby White, who lives in Oxford, UK, and dedicates much of her life to supporting families of children diagnosed with Rb This website is split into several sections: Rb Resource Directory - www.orphancancer.org/ORbIT/ResourceLinks A directory of links to online resources which you may find useful in your journey though childhood cancer. Each link listed on this site has been thoroughly reviewd by Abby before being added, Subjects covered include general information about Rb, Rb support groups and e-groups, Rb treatment centres with online information, personal web pages about rb, genetics, and links to medical articles. Treatment Centre - www.orphancancer.org/ORbIT/Treatment Answering some of the most frequently asked questions, this section uses simple language to address confusing and difficult subjects such as UEAs, cryotherapy and laser surgery, blood counts, chemotherapy (with a fairly extensive section on side effects), radiotheapy and enucleation. Personal Stories - www.orphancancer.org/ORbIT/Stories Parents tell of how they went through the storm with their chilren - and emerged on the other side. Some of the children had unilateral Rb, some bilateral, several had trilateral. Some had radiotherapy or chemotherapy - or both. some only enucleation. All Are very special children, or very special parents. Their parents have chosen to share their stories in the hope that they will be able to give you some encouragement along this difficult road to recovery, both physically and emotionally. Please do take the time to read these inspiring stories. Rb Family Directory - www.orphancancer.org/ORbIT/Directory This is a password protected section of the website, containing a directory of contact details for families and survivors from around the world who have been touched by Rb. The entries are arranged and searchable by geographical location, and contain, names, ema and postal address, telephone numbers, and brief comments - as offered by the participants. You will need to complete the Rb Directory Application Form (www.orphancancer.org/ORbIT/directoryform.html), to obtain the username and password for access. Please understand that this is necessary in order to protect the privacy of the families who agree to participate in this project. Dolphin Family Pages - www.orphancancer.org/General/Dolphin/Family Part of a growing section, these few pages have some useful advise on communication in the aealy days after diagnosis, especially with friends and extended family members, and on seeking and accepting help. They contain advice and ideas from parents who have been there before you and learned from experience, some of the better ways to handle difficult and distressing situations. I hope some of these pages will be helpful to you. General Resource Links www.orphancancer.org/General/ResourceLinks This is another external links directory. However, this is not specific to Rb. Instead, it covers subjects relating generally to childhood cancer. Subjects include online online medical journals, general information resources, emotional and practical support for adults, emotional and practical support for children, emotional and practical support for siblings, financial assistance and insurance issues, medical air travel assistance, hospital accommodation, bereavement support, camps and retreats, websites for children, wish granters, and survivors. -------------- Five of the most useful childhood cancer websites you'll ever find are listed below. There are many useful childhood cancer resources on the internet (I hope you will think this is one of them). In my humble opinion, the following are five of the best for families of children with retinoblastoma. For your refernce, next to each one, I have linked to the place where the website is listed within the OCS directory, so that you can find out other similar websites, if you wish. R-blastoma http://listserv.acor.org/archives/r-blastoma.html A discussion group for parents, survivors, relatives and friends, maintained by an bilateral Rb survivor at the Association of Cancer Online Resources. Thia is quite possibly the most friendly, caring, compassionate and knowledgable Rb parent support group you will ever be a part of, and the best thing about it is that there are always people on call. It is a truly international network of families and survivors - from Canada to Australia, England to South Africa, this is a global network of families united by a will to overcome adversity, to surive retinoblastoma Retinoblastoma Support Groups and online communities. www.orphancancer.org/ORbIT/ResourceLinks/support.html Candlelighters Childhood Cancer Foundation. www.candlelighters.org and www.candlelighters.ca Candlelighters is a national support organisation established in both the USA and Canada. It offers advocacy and advice for families dealing with all kinds of childhood cancer, support for siblings, summer camps and activities programs and resources packs. Candlelighters in the USA offers a range of excellent printed resources, including a superb book about educating the child with cancer. These books are free to families, including around the world, once postage costs have been satisfied. General Cancer Support www.orphancancer.org/General/ResourceLinks/cancerinfo.html Angel Flight www.angel-flight.org If you are facing long journeys to your child's medical centre, which could be made easier by air, but the cost of airline tickets are beyond your means, contact Angel Flight and see if they can help. Angel Flight, and many other similar organisations, fly children and one or two parents to medical cancer related examinations and treatment around the world. Angel Flight use private and corporate jets. and a lot of goodwill, as do many other organisations. Some organisations use commercial airline tickets donation programs. There are lots out there to check out. Only a few can be applied for at short notice, however, they are all well worth looking into. Your hospital social worker should be able to help you out in the long term. Medical Air Transportation. www.orphancancer.org/General/ResourceLinks/flights.html Starbright Foundation http://www.starbright.org Starbright is an initiative supporting seriously ill children, providing them with creative materials so that they can learn to understand the enviroment they are in and begin to come to terms with it so that they can help themselves. The foundation develps resources to help children understand hospital procedures they will encounter, such as spinal taps and medical imaging. There are specially developed resouces available for pre-school age children. Starbright maintains a specially supervised online communiy, where children from around the world can meet one another and interact with youngsters of their own age. Emotional and Practical Support For Children www.orphancancer.org/General/ResourceLinks/childsupport.html Super Sibs www.supersibs.org Because siblings are important too! This US based organisation supports, honours and recognises the siblings of chilkdren with cancer. It provides education resources for siblings and for those who care for them, organises social activities for and sibling inclusion awarenes events. It also provides "smileCards" and welcome packs for siblings. Emotional and Practical Support For Siblings. www.orphancancer.org/General/ResourceLinks/siblings.html -------------- "Let me know if there is anything I can do to help". People are so well meaning, but those words just drive you crazy, don't they? Those seismic shock waves do keep rippling outwards though. People feel completely stunned. They truly want to help you, but the honestly often don't know what to do for the best. Most people won't ever have been confronted by a challenge like childhood cancer before. Your parents, siblings, freinds and neighbours will be struggling just as much as you to know how to respond to the diagnosis. The Dolphin Pages contains an extensive section of suggestions for friends and extended family members to look at for suggestions of ways in which they can help. There is a special section for Grandparents, and a helpful guide to things to say (and things to avoid saying). Please suggest that your friends have a look at this section: The Dolphin Friendship Pages www.orphancancer.org/General/Dolphin/Friends Another solution is to create a list of the things you need doing, such as someone to provide meals, or lifts to the hospital, and keep several copies in your purse. Then give a copy to each person who says "let me know if I can help". Then the ball is in their court. Do not be afraid to ask for help - you are going to need it. Remember, we are with you here. You can get through this. You can survive. This page is dedicated to baby Devin, and his mum, Jessica. July 28, 2005. ---------------------------- Disclaimer This information page has been prepared by an individual who does not have medical training. However its contents have been reviewed by appropriately qualified medical professionals for accuracy and quality. This page 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. |
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