| Childhood cancer is uncommon, and as these young patients require very specialised care, they are usually treated at dedicated regional paediatric oncology centres. The incidence of retinoblastoma and optic glioma is particularly low, and so there is only a limited number of centres equipped to provide comprehensive care for children with these tumours. This means families may need to travel great distances to specialist hospitals for consultations, treatment and follow-up care... Whether staying overnight to attend a one day clinic, receive a few days of chemo treatment, or complete several months of radiotherapy, finding suitable accommodation near the child’s hospital can present a big problem for families. City centre hotels are generally very expensive, and more affordable options are often situated further away, making travel difficult. Many hospitals do provide fold-away beds next to the child, but these are not practical for long stay families, or those whose children are receiving outpatient care. The Ronald McDonald House Charities was formed to address this need for purpose-built family accommodation near hospitals. The initiative began with the family of 3yr old leukaemia patient, Kimberly Hill, whose father, Fred, happened to be a member of the Philadelphia Eagles football team. Throughout three years of treatment, Kim’s parents slept alongside other families on waiting room chairs in order to stay close to their daughter. They realised this situation had to change, and rallied the fundraising support of Philly Eagles team-mates to help realise their dream of temporary home-style accommodation for families of hospitalised children. Opened in 1974, the first house took the name of its most generous supporters - the local McDonald’s franchises, whose mascot has long been a symbol of happiness and fun for children worldwide. Thanks to generous grants and support of other McDonald restaurants and local communities, seventy more houses opened during the next ten years. In the thirty years since the Hill’s uncomfortably sleepless nights, Ronald McDonald House Charities have supported over 10 million families and established almost 240 houses in 24 countries around the world. Collectively, they provide almost 6000 comfortable hospitality house and in-hospital bedrooms for use by parents, siblings and other relations supporting a sick child. These are not merely rooms near the hospital, but a haven of peace and tranquillity away from the stress of the hospital environment, a place to find rest, refreshment and wholesome nourishment. Kitchens, laundries, playrooms, libraries, reception rooms and other communal areas encourage interaction between the residents, and a sharing of emotional and practical support among these families. Many of the houses provide a transport service to and from area medical centres, as well as weekly shopping runs and church visits. Initial grant funding is provided by central RMHC to help establish a house, but once it has been built, the local branch of RMHC relies on community and local business support to meet its annual running costs and daily requirements. Worldwide, 30,000 regular volunteers work to ensure families have a warm and welcoming place to stay during their child’s hospital admission or visit. These families are encouraged to give a small donation for each night of their stay, but none are ever refused a room due to financial difficulty. Houses can be found in all US states (with the exception of Alaska, New Hampshire and Wyoming), as well as in Argentina, Australia, Austria, Brazil, Canada, Denmark, England, Finland, France, Germany, Honduras, Hong Kong, Hungary, Japan, Malaysia, Mexico, The Netherlands, New Zealand, Romania, Scotland, Spain, Sweden and Switzerland. RMHC chapters are also located in New Hampshire and a further 23 countries which currently do not have a house: Belgium, Bulgaria, Chile, Columbia, Costa Rica, Czech Republic, El Salvador, Ireland, Israel, Italy, Nicaragua, Norway, Panama, Philippines, Poland, Portugal, Puerto Rico, Russia, Singapore, Taiwan, Thailand, Turkey and Venezuela. If you wish to stay at a Ronald McDonald House, or volunteer to support the organisation, contact the appropriate house or chapter directly. An address list of houses and chapters (look under the 'Contact Us' option) can be found on the central RMHC website. Many of the houses maintain their own websites, although these are not listed on the central site. Abby White has written three articles about the RM houses in Memphis, Washington D.C. and Philadelphia. They can be accessed on the Oxford Children’s Hospital website at Featured website address: orphancancer.org Location: General/ResourceLinks/hosphosp |
| Make A child Smile is a US based organisation which strives to bring a little joy into the daily lives of seriously ill children living across the United States. MACS was founded in 1998 as an internet centred program. Each month, the MACS site features the stories of three children with severe / chronic life-threatening illnesses, sharing information about each child's abilities and interests, as well as those of their siblings. Visitors are invited to read the stories and then send cards and, where possible, a small gift through the mail to bring cheer to the sick child and their family. Featured children must be aged between two and thirteeen years. The lower age limit is specified as children must be old enough to understand the thought behind sending them "happy mail". Confidentiality is maintained through withholding last names from the public site, and the mandatory use of Post Office Box addresses only. The process of submiting a child to be featrued on MACS is simple, and all information is available on the website. MACS is a wonderfully simple way of allowing people to help lift the spirits of a child with retinoblastoma or optic glioma. The encouragement of MACS mail also touches siblings and parents, and can have lasting positive effects on the family's psychological wellbeing. The site also provides a platform to educate its regular visitors about illnesses, such as Rb and OG, which are not so well known by the general public. It is a superb initiative which does exactly what it says. Featured website address: orphancancer.org Location: General Resource Links > Emotional and Practical Support for Children. |
| Previously Featured Sites |
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| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| ORPHANS OF THE CANCER STORM |
| 4.5year old Daisy was diagnosed with bilateral retinoblastoma when she was just 13 months old. Since that time, she has spent much of her life in and out of Hospital, receiving aggressive life and sight-saving treatments. Daisy has already lost one of her eyes to Rb, and doctors have run out of treatment options here in the UK, other than removing her remaining eye. So Daisy and her family have travelled to Toronto in Canada, where a pioneering new treatment may help to save her sight, as well as her life. Daisy's family have set up a fund to raise money to help meet the costs of her treatment in Canada. The website contains updates on Daisy's progress, and details of a novel way in which you can contribute to her care - simply by sending her a get well text message from your mobile phone. Featured website address: orphancancer.org Location: ORbIT Children's Pages Online |
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| The Daisy Fund www.thedaisyfund.org |
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| Prayer is a very powerful force. Many parents acknowledge it as one of the greatest sources of strength throughout their child's cancer journey. Kids Need Prayer is an international children's prayer ministry founded by a retired Maryland man named Grampa Jim. Inspired by the very short, but infinitely valued, life of a tiny American girl named Victoria who had Trisomy 18, Jim was driven to establish a forum which would enable families and friends of children in medical and social need to request prayer support. Through a network of web pages and daily email alerts, people can stay up to date with childfren's news and progress. Families may also ask Jim to set up and maintain a web page for their child. Confidentiality is preserved at all times if it is requested, or if Jim believes it is in the child's interests, and email addresses are not posted unless expressly requested, to allow for correspondance. Please visit the website of Kids Need Prayer, and send requests directly from there. You will find simple details of how to do so by clicking on "prayer req" under SUPPORT on the left hand navigation bar. There are a number of interesting childhood cancer and leukaemia links from the KNP home page. However, be aware that KNP uses frames, and mirrors these sites, so you won't be able to bookmark any useful pages you find unless you manually copy any links from the banners into your address bar. Featured website address: orphancancer.org Location: General Resource Links > Emotional and Practical Support. |
| MAKE-A-WISH FOUNDATION INTERNATIONAL The experience of a granted wish creates a uniquely magical memory for children with cancer and their families. Wishes cover a broad range of requests, from receiving a play station, an adventure playground for the garden or a shopping spree, to theme park trips, dream holidays or meeting a favourite celebrity. Many children have been granted the experience of becoming someone else for the day - a fireman, zoo keeper, pilot, princess, or dancer for example. Parents often do not pursue wish-granting opportunities for their child because they believe such gifts are reserved for those with a terminal illness. However, many organisations also grant wishes to children with a "stable" disease and those in remission from cancer. Optic nerve glioma and all three forms of retinoblastoma are considered by many wish granting organisations as "life-threatening" diagnoses, and therefore qualifying illnesses. The largest of these, Make-A-Wish Foundation® International Is a non profit organisation dedicated to granting the wishes of seriously ill children across the globe. Affiliate programs operate in nearly 30 countries, covering five continents, making MAW International the world’s largest wish granting organization. Since its foundation in 1980, its supporters have helped turn the wishes of over 100,000 children into a reality. To qualify for a wish, children must be aged between three and seventeen years, and must not have received a wish from any other wish-granting organization. The child’s doctor will be asked to confirm medical eligibility. Both retinoblastoma and optic glioma are considered to be life-threatening illnesses by the Foundation. The privacy of children and families is respected throughout by Make-A-Wish Foundation. All information is considered confidential and will only be discussed with outside parties if it is essential to granting a wish, and the parents/guardians have given consent. Make-A-Wish Foundation grants wishes to eligible children regardless of economic status, gender, religion, race or national origin. Wish referrals may be made by the child’s parents or guardians, medical professionals, or directly by the child. If you know a child who may be eligible for a wish, contact your nearest Make-A-Wish Foundation office. You can locate this from the central website by pointing your mouse to the CONTACT US link at the top of the page and clicking AFFILIATE OFFICES on the drop down menu. Make-A-Wish and Give Kids The World A Disney World experience remains among the most frequently requested wishes, particularly from young children. Such wishes are granted in partnership with Give Kids the World, an independent non-profit organization which works to aid the fulfillment of a seriously ill child’s wish to visit the Central Florida attractions. GKTW works in partnership with over 250 wish-granting organisations around the world. Make-A-Wish organises round trip travel for the family to Give Kids the World Village, a 51 acre Orlando resort built exclusively to meet the needs of children with life-threatening illnesses. Give Kids the World then provides accommodation, meals, attraction tickets, and a host of other special touches to make the holiday a wonderful experience. Make-A-Wish Foundation and Give Kids The World are two seperate organizations which work in harmony to make wishes come true. Featured website address: and orphancancer.org Location: General Resource Links > Wish Granting Organisations. |
| The Association of Camcer Omline Resources (ACOR) provides information and support to patients and their caregivers through a wide range of online discussion groups, also known as list serves, and information pages. The Association maintains a general pediatric oncology (PED-ONC) and rare cancers (RARE-CANCER) list serve, as well as several relating specifically to Retinoblastoma (R-Blastoma and RB-survivors) and low grade brain tumours (LOWGRADE-BT). There are also several general lists for cancer survivors (PED-ONC SURVIVORS and LT-SURVIVORS). Other lists cover clinical trials and specific treatments, complimentary and alternative therapy clinical trials, families and caregivers, psychosocial support, paliative and hospice care. To read a published article about ACOR’s Retinoblastoma listserves, written by Abby White, click here. ACOR also hosts a wide variety of information websites, many of which have been created by patients and their families (such as the , and are considered to be among the most informed and detailed sites relating to a specific cancer or treatment. Cancer specific pages cover basic information and PDQ statements relating to visual pathway and hypothalamic tumours, Retinoblastoma and pineal tumours. Featured website address: orphancancer.org Location: ORbIT/ResourceLinks/support and SONGS/ResourceLinks/support. |
| 2003-2004 Back to index |
| The United Kingdom Childhood Eye Cancer Trust (formerly the UK Retinoblastoma Society), provides support for families and individuals affected by retinoblastoma across the UK and around the world. CHECT manages a network of family contacts, publishes information leaflets and resources and a quarterly newsletter (available online), organises family days and distributes Dino, the dinosaur with artificial eyes. The trust also funds various research projects which aim to directly benifit families and survivors. Committed to raising awareness of this eye cancer, the trust launched its first annual Rb Awareness Week in September 2003, during which the profile of retinoblastoma was significantly raised throughout the British media. CHECT is based at the Royal London Hospital, which is home to the UK's main RB treatment centre. Featured website address: orphancancer.org Location: ORbIT/ResourceLinks/support. |
| The Adventures of Captain Chemo is an animated, interactive learning tool for youngsters, making cancer education fun for both young and older children. Captain Chemo began life as a comic strip created by Ben de Garis, a teenage cancer patient at England’s Royal Marsden Hospital. Though Ben died in July 1999, Gameplay has since transformed his comic strip heroes into a popular fully interactive and educational computer game which is available online. Voiced by the actor Shaun Scott (DI Deacon of “The Bill”), Captain Chemo heads up the Chemo Command, a crew of three who are named after cancer fighting drugs. Their mission is to rid the body of cancer, and players must help the crew by shooting down cancer cells with chemotherapy and bacteria with antibiotics, and answering questions about side effects and procedures to gain points that convert into rankings within Chemo Command. Do not allow the difficult colour scheme at the beginning of some games to deter you. The games are clear and fun to navigate, with plenty of sound effects and interactive options. The animations may be difficult for visually impaired children to interact with, but the games are set up so that these sections can be skipped if necessary. Captain Chemo is on hand to help out with the answering of difficult questions. He will direct the player to a sperate page which contains the answer within text information about a specific treatment or side effect. Players may also suggest questions and their answers to be used in the games. The Captain Chemo website also contains an interactive colouring book, word searches and a pictorial memory game, as well as links to Royal Marsden information booklets for parents. This is an excellent site where older children can learn about their own cancer, or that of a relative or friend, in a safe and fun way. Younger children may enjoy playing the memory game or colouring in the pictures of Captain Chemo and his crew Featured website address: orphancancer.org Location: General/ResourceLinks/childsites |
| The Brain Tumor Foundation for Children developed from a mutual support group formed in 1980 by Rick and Sheila Sauers, following the diagnosis of their daughter’s cancer at five months of age. The Foundation was officially established three years later, in response to an overwhelming need for greater information, support, and public education. The BTFC provides support for families through various programs including: a busy calendar of social activities, holiday events and outings; access to information resources, publications and survivor stories; publication of quarterly newsletter “The Butterfly Bulletin” (available online) and the inspirational book “Of Heroes and Angels“; parent link up; the Butterfly Fund - instituted in 1999 to provide financial support for families receiving treatment in Georgia. Ongoing oncology research is vital, and the BTFC supports cutting edge research into paediatric brain tumours, improvement of treatments and the child’s quality of life, and the tireless search for a cure. In addition, the Foundation has funded medical and nursing scholarships in paediatric neuro-oncology, as well as the purchase of advanced medical equipment for brain tumour treatment centres in Atlanta and nationwide. During the 20 years since its inception, supporters of the BTFC have provided over US$1.7million for this valuable work. Based in Atlanta, Georgia, the BTFC provides support primarily to families living and receiving treatment in Georgia. However, many of its services and resources are available to families further afield. The Butterfly Bulletin, inspiring survivor stories and further information about all the above programs can be found on the BTFC website. Featured website address: orphancancer.org Location: SONGS/ResourceLinks/BTorgs |
| Every year in the USA, 12,500 children are diagnosed with cancer. That translates into an average of 1 diagnosis every 42 minutes. Cancer is the leading cause of disease-related death in children. However, although the incidence of childhood cancer is increasing, medical advances during the past 30 years mean the cure rates are also increasing. Awareness and advocacy is essential in the search for more effective, less toxic treatments, and a greater understaning of childhood cancer. America's National Childhood Cancer Foundation is the principle voice of childhood cancer families and survivors across the nation, particularly at a national policy-making level. It also provides the Children's Oncology Group with funding for ongoing critical research, publishing details of such activites in the NCCF magazine "Childhood Cancerline". September is National Childhood Cancer Awareness Month in the USA, and the NCCF has many awareness events and campaigns planned across the country. They are also asking people to support/organise events in their local community. The pages listed below link to some of the different projects and activities you could become involved with. Featured website address: and orphancancer.org Location: General/ResourceLinks/cancerinfo |
| When a child is diagnosed with cancer, the whole family is affected. Frequently, however, siblings may feel confused, isolated and unloved in the midst of frenetic energy spent on looking after the child who is sick. The brothers and sisters of children with cancer are a special group of survivors. Their needs must be acknowledged and addressed constructively, so that they too can understand and cope with the situations arising from such a serious diagnosis. They need to know that they are important too, to be reassured that they are loved and cared about as much as the child who is sick. They need to be able to have a safe forum in which to ask questions and express their concerns. Supersibs was established in 2002 in response to a growing need for organised sibling support. The organisation is based in Illinois, USA, and originally began by providing support for children within the immediate Chicagoland and Milwaukee area. However, the foundation is now developing a national network and support program, reaching out to the thousands of "invisible heroes" across the USA. The foundation provides advocacy for siblings in the form of resource and information packs, as well as educational outreach for siblings and for the adults who care for them. They also organise a callendar of social events, and the sending of "smile cards" - special happy mail for siblings. Featured website address: orphancancer.org Location: General/ResourceLinks/siblings |
| There are so many issues to deal with when your child is diagnosed with cancer, so much information to absorb, and so many questions to ask. Parents often feel they are runnoing around in many different directions, and become quite dizzy with the enormity of the experience. Candlelighters is an organisation which can help calm the process down a little. This is the national Childhood Cancer Foundation of Canada. Based in Toronto, Candlelighters has chapters across the country, supporting families through the distribution of information and practical resources, mutual support groups, activities and events for children, advocacy and awareness raising. They provide Touch The Sky packs to newly diagnosed families, kits which encourage children and parents to work together, using guided imagery to help the child cope with procedures and treatments. Candlelighters Canada has a catalog of over 400 books, videos and other resources, plus the Toronto reference library, containing more than 2,000 items. There is also a network of more than 50 parent/survivor support groups across the country, sharing knowledge, experience and encouragement. When children are ready to go back to school after diagnosis or treatment, Candlelighters Canada is there to help ease the way. They have develeoped a Back To School pack, full of books, videos and interactive games which explain childhood cancer. Kits are targeted specifically at the age groups 5-7, 8-10, 11-13 and 14+. The child's school is entitled to keep the kit for upto one month. No parent or child should feel alone after a diagnosis of childhood cancer, or at any point along the journey through treatment. Candlelighters Canada works hard to ensure that families have access to the resources and support needed to facilitate the best possible outcome for all involved. Featured website address: orphancancer.org Location: General/ResourceLinks/cancerinfo |
| Copyright © 2003-2004, Orphans of the Cancer Storm. All Rights Reserved. |
| Chemotherapy is now a standard treatment for children with retinoblastoma and optic glioma. However, completing the course can be a hard, lengthy process (5-6 months for Rb, 1yr+ for OG). Long, stressful days in hospital, lousy side effects, isloation from friends when blood counts are low... All these challanges must be borne by the child and his or her family as they move towards the goal of an eventual cure. In today's arena of a holistic approach to healthcare, much emphasis is placed on the way in which a positive state of mind impacts response to treatment, and speed of recovery. Indeed, a number of doctors have noted that encouraging a child to laugh may have a direct impact on the imrovement of that child's white blood count following chemotherapy. However, good humour can be hard to come by when battling with the physiological and psychological impact of such intense treatment. Chemo Angels aims to encourage children (and adults) receiving chemotherapy by sending cards and gifts through the mail. This non-profit organisation was established, and continues to be run by mother-of-three Laura Armstrong, from her home in Julian, California. The name "Chemo Angel" was given by a lady whom Laura herself supported with cards and small gifts throughout chemotherapy. This programm is free of charge. Each approved patient is assigned a personal Chemo Angel who undertakes to send cards and small gifts every 10 days or so for the duration of treatment. The patient may also receive mail from a Special Assignment Angel during events such as a birthday or Christmas. Chemo Angels accepts children from across the USA or Canada into its program. However, children under two-and-a-half years are not accepted as they are considered to be too young to fully benifit. If you would like to submit an application for your child to Chemo Angels, you can complete the online form within the organisation's website. You will be asked for details of the child's hospital and doctor, so that their eligibility may be confirmed. Complete the form with as much information as possible - the more detail you give about your child's likes, dislikes interests, hobbies etc, the more effective the child's Chemo Angel can be. The organisation is always looking for new volunteers to sign up as Chemo Angels, and you may apply online to support in this capacity. Many Angels are survivors of cancer themselves, or have been deeply affected by it. In addition to the central Chemo Angels program, the organisation maintains an online support group for patients and survivors of cancer, as well as for Chemo Angel volunteers. Featured website address: orphancancer.org Location: General/ResourceLinks/childsupport |
