America's Baby Cancer Foundation
16162 Ballantine Lane
Huntington Beach, CA 92647
Phone: 714-655-4431
Welcome
A Parent's Virtual Reference Library
There are a number of resources for information and support for families with babies with cancer.
There are also a number of Web sites that provide assistance. As programs and resources are developed, they will be included here, so be sure to return to this page often for updates.
Because the information in this section is extensive, we will begin by including a table of contents by subject matter. We will then come back and fill in each section with content.
If the section from which you need information has not yet been completed or if you would like to comment on the information provided, let us know about broken links, or add new information, please send an e-mail to PhillisL_babycancer.com. Upon receipt of the e-mail we will e-mail the content you requested.
Come back often!!!
Cancer related links
The following section of links and information represent a consolidation of many hours of work and research done by parents and forwarded to this Foundation for dissemination. We share with you the fruits of their love and labor, hoping that it shortens your journey to answers. Our heart felt thanks to Loice Swisher, Karen Moody, Susan Junghans, Debbie Adams, Monica Curran, Janet Williams, Marilyn Clements, J. Goldress, and Dr. Mark Thornton for much of the information that has been included.
The following pages are provided solely to aid in your own personal search. There is no endorsement of any particular site and no assurance of the accuracy of the information contained with in the site. Before making any medical decision, you are urged to talk with your doctor and health care team.
Getting Started
By now you have looked at the size of this folder and are wondering how you are going to find the most helpful sites. Starting a search for information can be overwhelming especially at a time when many other needs must be met. This book is divided into sections with considerable overlap so one may find what they are looking for. This is not an exhaustive list but some of the ones other parents have found useful.
1. Pediatric Brain Tumors List Serves - There are several great bookmarks, files and many posts in the archives to aid in your search.
http://groups.yahoo.com/group/Pediatricbraintumors
2. Childhood Brain and Spinal Cord Turmors: A Guide for Families, Friends and Caretakers by Shiminski-Maher, Ccullen and Sansalone. This book is not on the web but is a must. You can find links from
http://www.candlelighters.org
3. Caring Bridge - A free, incredibly easy way to set up a website to keep in communication with loved ones.
www.caringbridge.com
4. Pediatric Oncology Resource Center- ACOR site - Arguably the best site out there for cancer parents to find information, links, and a community. Any issue- check here first. It probably has been covered and the organization is easy to use.
www.acor.org/ped-onc
5. The Never Ending Squirrel Tales - This is a site by parents for parents of cancer kids- a lot of stuff that may hit home.
www.squirreltales.com
6. Virtual Trials - This can be a hard site initially to negotiate but the information here is great. There are more services/ links on brain tumors here than any other site. Check out the guide for the newly diagnosed at
http://www.virtualtrials.com/faq/toc.cfm
7. National Coalition for Cancer Survivorship - This organization considers survivors from the time of diagnosis through the balance of life. One can get the Cancer Survivors Toolbox free of charge from this site.
http://www.canceradvocacy.org/
Getting Connected (ListServes and Bulletin Boards)
Listserves and bulletin boards are interactive ways to use the internet to connect to others. Each has its own advantages and disadvantages. Listserves are a group of people with common interests that join to be able to contact each other usually for support and information.
The down side of lists are 1) they usually are not regulated so medical information is not guaranteed to be accurate, 2) there may be a large volume of mail, 3) there are treatment differences among institutions that can create anxiety, 4) bad news (deaths, recurrences, and complications) can create more angst, and 5) privacy can not be guaranteed. However, many parents find lists a very powerful support in that they can talk with others who are traveling the same path. The support and decreased isolation are tremendous for some individuals. Membership is usually required but is virtually always free.
Tips to decrease mail :
1) consider digest versions that packs multiple posts into one email usually sent once a day
2) check if web-only is an option and review posts at your leisure from the archives.
If you don't have an email address:
contacthttp://www.virtualtrials.com/mail.cfmand may be able to use this site to obtain an email address. You must sign in and agree to the conditions of usage.
If you do not see a list serve you are interested in- try doing a search on your own. Two of the best starting places arewww.acor.orgmailing lists and www.yahoogroups.com. Groups are starting all the time and it is difficult to keep up with the new communities.
General Brain Tumor List Serves
Pediatric Brain Tumors
A group of over 200 primarily caretakers of children with pediatric brain tumors of all varieties.
Review 6/06
Cerebellar Mutism and Posterior Fossa Syndrome
The files and book marks are one of the best aspects of this site. There is an annotated bibliography from a medline search on cerebellar mutism, a bibliography on radiation and cognitive effects, and several articles from a speech pathologist.
http://groups.yahoo.com/group/cerebellarmutism
Educating Brain Tumor Kids
A group with links and files dealing with school issues- neuropsychological testing, school re-entry, school options, late effects, etc. There is an associated list serve with archives.
http://groups.yahoo.com/group/EducatingBTKids/
BRAINTMR mailing List
Perhaps the oldest and largest list founded in 1993 by the Brain Trust Healing Exchange. It is a forum to discuss topics related to all types of brain tumors whether labeled "benign" or "malignant." Information and experience is shared among brain tumor patients, their families & supporters, all kinds of concerned medical and allied health professionals, medical educators, and researchers who study brain tumor growth or treatment.
http://www.braintrust.org/services/support/braintmr/
Specific Brain Tumor Type List
Astrocytoma
This site of approximately 80 people who have an interest in astrocytomas- both adults and kids. Archives are public.
http://groups.yahoo.com/group/astrocytoma
Choroid Papilloma and Carcinoma
This is a very small group interested in this rare tumor
http://groups.yahoo.com/group/Choroidpapilloma
Craniopharyngioma
One of the lists by the Brain Trust Healing Exchange that is open to anyone interested in this tumor.
http://www.braintrust.org/services/support/othergroups/
Dysembryoplastic Neuro-Ectodermal Tumors
A list for those interested in this type of tumor.
Ependyparents
A small list for parent of ependymoma kid
http://www.braintrust.org/services/support/othergroups/index.html#ependyparents
Optic Glioma
There are about 90 people on this site about this tumor. Archives are private.
http://groups.yahoo.com/group/optic-glioma
Spinal Tumors
This is a relatively small and new list to address the issues related to spinal tumors.
Brainstem-Glioma
This is a group over 100 persons interested in this tumor. Archives are private.
http://groups.yahoo.com/group/brainstem-glioma
Childhood Cancer Sites
Madisons Foundation
Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication amongst parents, physicians and medical experts. Information about Rare Pediatric Diseases - Compiled by Experts with help from the David Geffen School of Medicine at UCLA, UCLA Mattel Children's Hospital, and City of Hope, Madisons Foundation is assembling a database of rare pediatric diseases. Database entries include symptoms, treatments, and additional sources where you can find out more information. Need help with confusing terminology? This site has a Glossary of Unfamiliar Terminology.
MADISONS Foundation
P.O. Box 241956
Los Angeles, CA 90024
Tel: (310) 264 0826
E-mail: getinfo_madisonsfoundation.org
http://www.madisonsfoundation.org/
Patty Feist's Pediatric Oncology Resource Center,
Arguably, the best general childhood cancer parent support site on the web. Virtually every aspect of childhood cancer is taken into account including disease, treatment, family issues, survivors, a time to go, activism, and other resources/links.
Reviewed 7/08
The Never Ending Squirrel Tales
This is a private, religiously oriented site that is exclusively by cancer kid parents for cancer kid parents. The site is full of practical tips, inspiring stories, and resources. It is possible to connect to other parent through either the guest book or the bulletin board. Some of the best pages are- Decorating your Hospital Room (http://www.squirreltales.com/articles/decorate.html); Out of the Mouth of Babes (http://www.squirreltales.com/articles/babes.html); and You know you are a parent of a cancer kid when. (http://www.squirreltales.com/articles/fun.html). One of the best sites out there.
Candlelighter's Childhood Cancer Foundation
In 1970, concerned parents formed this group that now has more than 43,000 members to address the concerns of childhood cancer. This site is not the easiest to negotiate but is very worthwhile as a resource if you stick to it. The links are excellent, the newsletters are in-depth (available on line), the recommend reading and links are top-notch and the message board in unparalleled in the childhood cancer community. Also one can look to see if there is a local support group.
Review 7/08
www.candlelighters.org
CureSearch
(formerly know as National Childhood Cancer Foundation) CureSearch unites the Children's Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF) through a shared mission to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. At more than 200 COG member institutions worldwide, our dedicated physicians, nurses and scientists are conducting clinical trials and performing research to identify cancer causes and pioneer treatments and cures. CureSearch NCCF supports this lifesaving research by raising public awareness and funds through awareness, legislative and fundraising programs, which directly contribute to increasing
www.curesearch.org
Foundation for the Children's Oncology Groups
(formerly know as National Childhood Cancer Foundation)
This organization provides education, advocacy for issues and fundraising. This is one of the organizations highly involved in Gold Ribbons Days for Childhood Cancer Awareness during Septembers (Childhood Cancer Awareness Month). Particularly interesting pages are: Facts About Childhood Cancer- (http://www.nccf.org/childhoodcancer/facts.asp) Childhood Cancer is Different- (http://www.nccf.org/childhoodcancer/different.asp)
www.nccf.org
A site whhich focuses on infant and toddler cancer. A growing network of involved parents who offer information and support. Building a good resource library.
www.babycancer.org
Children's Cancer Web
A site dedicated to providing a list of childhood cancer resources- worldwide.
http://www.cancerindex.org/ccw/index.htm
Hope Street Kids
This foundation was started by US Representative Deborah Pryce and her husband after their child died of neuroblastoma. This is an excellent site. The parents guide has a list of questions and practical tips parents could consider when their child is diagnosed, about procedure, getting the right treatment, meeting your family's needs, finding support and clinical trials. Good information about childhood cancer (facts and figures) and good resources.
http://www.hopestreetkids.org/
Cancer Care
Cancer Care is a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance. Phone conferences are frequently listed.
www.cancercare.org
Children's Cause
This is the site of a consumer-based, independent advocacy voice focusing on national policies related to services for pediatric cancer survivors, research, and health care.
www.childrenscause.org
National Children's Cancer Society
A national organization based in St. Louis that helps with financial and emotional support, children and their families can more effectively deal with the difficulties of cancer treatment. There are several services and tons of links.
http://www.children-cancer.com
Cancer Kids
This organization began in 1997 helps kids tell their stories (mainly memorial) by listing the personal websites. It is a relatively small site with a Message Board.
www.cancerkids.org
Chai LifeLine
A Jewish organization that offers a variety of program including a kosher camp, other trips and wish fulfillment programs and telephone support.
www.chailifeline.org
Shared Experiences
A place to search for others experiences and add your own.
http://www.sharedexperience.org/
Kids Health
The Nemours Foundation maintains this website and has won multiple awards as one of the world's best health websites for children. It has information on cancer and is extremely easy to read - fact filled yet understandable. Website has info on lots of topics, not just pediatric cancer.
www.kidshealth.org
Neurologic and Neurosurgical Issues
Hydrocephalus and Shunts
Your Surgery.Com
This site now charges for use- 5 dollars for one veiwing. Previously viewed in 11/01 but not seen since it became a money site. It was a good site with animation of surgery and audio.
www.yoursurgery.com
Hydrocephalus
An article written at a high medical level on all types of hydrocephalus
Hydrocephalus Center
Various books, articles and links that may be of interest to the hydrocephalus patient.
http://www.patientcenters.com/hydrocephalus/
Hydrocephalus (HYCEPH_L)
This is the home page of the listserve which gives instructions on posting and subscribing. This list is open to all people interested in hydrocephalus and frequently goes off-topic.
http://www.geocities.com/HotSprings/Villa/2020/listserv.html
Hydroparents
A listserve of approximately 175 people interested in hydrocephalus.
http://groups.yahoo.com/group/HydroParents
Seizures
Brain Tumor Foundation of Canada Pediatric Brain Tumor Resource Book. Chapter 12 is related to seizures and brain tumors.
http://www.braintumour.ca/BTFCmain.nsf/vwpdf/NT00000A62/$File/PediatricHandbook.pdf
The Epilepsy Foundation
This organization has been around since 1968-extensive site.
http://www.epilepsyfoundation.org/
Cerebellar Mutism/Posterior Fossa Syndrome
Cerebellar Mutism
An article written for Childhood Brain Tumor Foundation on this complication.
Cerebellar Mutism FAQs
This is a public file on a yahoogroup.
http://groups.yahoo.com/group/PACancerKids/files/
Stroke
Children/s Hemiplegia and Stroke Association
Offers support and information to families- online support groups available.
www.hemikids.org
Motor Recovery in Stroke
Written for medical professionals and geared towards adults- some children's information.
http://www.emedicine.com/pmr/topic234.htm
Facial Nerve Dysfunction
Facial Nerve Paralysis, Dynamic Reconstruction
This is a high level medical article but would be of interest to those dealing with this problem.
http://www.emedicine.com/plastic/topic218.htm
Facial Nerve Parlysis, Static Reconstruction
http://www.emedicine.com/plastic/topic221.htm
Radiation Necrosis
This is an article written for medical professionals.
http://www.emedicine.com/neuro/topic330.htm
.
Bone Marrow and Stem Cell Transplants
Bone Marrow Transplants- An Online Book
This book goes over the nuts and bolts of bone marrow and stem cell transplants including information on infections, infertility, insurance, and graft versus host disease. There is a special section on pediatrics.
http://www.bmtinfonet.org/bmt/bmt.book/toc.html
Bone and Marrow Transplant Information Network
This is a great site with tons of information. There is listing of transplant centers, newsletters, books that can be viewed on-line (and then ordered as hard-copy as desired), and other services. There is book on autologous stem cell transplant for about $10.00.
http://www.bmtinfonet.org/
National Marrow Donor Program
The National Marrow Donor Program (NMDP) is the international leader in the facilitation of unrelated marrow and blood stem cell transplantation. This site has information about cord blood, stem cell transplants, donation information, FAQ's and real stories.
www.marrow.org
Bone Marrow Transplant List Serve
http://listserv.acor.org/archives/bmt-talk.html
Graft Versus Host Disease List Serve
http://listserv.acor.org/archives/gvhd.html
The Candlelighters Guide to Bone Marrow Transplants in Children by F. Leonard Johnson MD & Ellen L. O'Donnell
Parents can obtain this book through candlelighters-page down.
http://www.candlelighters.org/publications.stm
Cord Blood Cord Blood
In many cases, parents of cancer kids are in the process of growing a family. This subject tends to come up when another pregnancy is expected. Because of the chances of great change within the industry, no particular private bank is recommended. To find a private bank, ask your OB-GYN or oncologist. Many can not stay up-to-date in this growing field so personal research can also make a difference in your decision by searching the web.
A Parent's Guide To Choosing a Private Cord Bank
The site is designed to provide an impartial evaluation of cord blood storage options for parents who are contemplating this form of medical "insurance". This was put together by parents of cancer kids who looked into this. There is a timeline history of stem cell/cord blood issues including a story about a parents who went in search of a designer baby through IVF to create a donor for their daughter who had Fanconi's anemia. Although there are no recommendations given- there are 13 companies listed in the US that does private banking (under company links), a summary of company features and a detailed summary of questions to consider when deciding among banks. At the very bottom there is a place for people to provide feedback on the process/bank they went through.
http://www.parentsguidecordblood.com/
Cord Blood Donor Foundation
This site primarily discusses donation. However, there is a great page evaluating private companies as there is a wide variation in price and services. There is a list of questions to consider when evaluating a private storage bank. Probably a good place to start to become a knowledgeable consumer.
www.cordblooddonor.org
March of Dimes- Cord Blood Fact Sheet
An interesting article which addresses some of the concerns and ethical issues in cord blood storage.
http://www.modimes.org/professionals/681_1160.asp
Cord Blood Donation- FAQ's on the National Marrow Donor Program Site.
http://www.marrow.org/FAQS/cord_blood_faqs.html
Information on donating cord blood including non-NMDP banks.
http://www.marrow.org/NMDP/non_nmdp_cord_blood_banks.html#California.
Designated Transplant Program
A targeted website that highlights the details regarding the Designated Transplant Program that may be of assistance to a family expecting and/or a member in need. The Program is specific to Cord Blood Registry.
Review 1/08
http://www.cordblood.com/dtp/index.asp
Medline & Clinical Trials Medline and Clinical Trials
PubMed
This site is a service of the National Library of Medicine that provides access to MEDLINE citations back to the mid-1960's and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.
http://www.ncbi.nlm.nih.gov/PubMed/
How To Research Medical Literature
Steven Dunn has prepared an article to help patients and caretakers gain the knowledge of "how to" research and locate medical literature via the internet.
http://cancerguide.org/research.html
ClinicalTrials.gov
A site started in Feb 2000 that allows patients, family members, health care professionals, and members of the public easy access to information on clinical trials for a wide range of diseases and conditions. In addition, there is a section on understanding clinical trials.
www.clinicaltrials.gov
Clinical Trials and Noteworthy Treatments for Brain Tumors
This link takes you to the home page where one can choose Find a Treatment
www.virtualtrials.com
Cancer Trials
A site sponsored by the National Cancer Institute that gives information about participating in clinical trials and a listing of specific trials for particular tumors.
http://cancertrials.nci.nih.gov/
Clinical Trials- The Informed Parent Series
This is an archived hour long lecture on the clinical trial process by Larry Kun, MD in 4/01.
http://www.pbtfus.org/informedparent2.htm
Complimentary & Alternative Medicine Complimentary and Alternative Medicine
Quack Watch
This is an extensive article regarding "questionable methods as lifestyle practices, clinical tests, or therapeutic modalities that are promoted for general use for the prevention, diagnosis, or treatment of cancer and which are, on the basis of careful review by scientists and/or clinicians, deemed to have no real evidence of value". Information on things from antineoplastins to shark cartilage. There are 65 reference articles. Also there is a section on misrepresentations. From the home page (www.quackwatch.com) there is a ton of other information.
/1Review 6/06
http://www.quackwatch.com/01QuackeryRelatedTopics/cancer.html
Complementary and Alternative Medicine on ACOR's Ped-Onc
This site divides this subject into complementary therapies to conventional therapy that is outside the practices of most conventional physicians, but are generally recognized as safe to use along with chemotherapy and radiation (art and music therapy, meditation, reiki, yoga, aromatherapy, and also nutrition and vitamin supplements). Some people feel this can improve the quality of life of the patient, relieve symptoms, relieve side effects, ease pain, and give the patient a better outlook on life. The other section is on Complementary and Alternative Medicine (CAM) which are therapies that are outside the practices of most conventional physicians and their value has not yet been established in scientific journals Extensive links on this site.
http://www.acor.org/ped-onc/treatment/cam/index.html
National Center for Complementary and Alternative Medicine (NIH site)
This site has information for consumers including fact sheets, alerts, and ongoing clinical trials.
http://nccam.nih.gov/
Complementary/Intergrative Medicine Educational Resource at MD Anderson Site
This site was created to assist patients and health care professionals in deciding what types of complementary medicine might be integrated into a patient's conventional therapy. There is a lot of information but no recommendations.
www.mdanderson.org/cimer
Steve Dunn's Cancer Guide
This site presents guidelines for evaluating treatments, as well as discussions of some of the treatments and links to other web sites and books with more information.
http://cancerguide.org/alternative.html
A Cancer Patient's Guide To Complementary and Alternative Medicine
This is a guide written by Duke for their patients. It is quite detailed with several appendices. There are 192 pages in Acrobat Reader Format.
http://cancer.duke.edu/PatEd/CAM.asp
End of Life Issues
It's Time to Go
This is a section of the pediatric oncology resource center on ACOR. There is a lot of information from other parents including funeral arrangements, grief links, a bereaved parents wish list, thoughts and poems.
http://www.acor.org/ped-onc/timetogo/timetogo.html
Children's Hospice International
In 1977, an 8-year-old boy was denied hospice because he was a child. This organization was formed in 1983 to provide a network of support and care for children with life-threatening conditions and their families.
http://www.chionline.org/
National Hospice and Palliative Care Organizations
An organization to promote quality end of life care. Some pediatric information on site particularly at ChIPPS page.
www.nhpco.org
Growth House
Site with a lot of information on end of life issues, grief, and care.
www.growthhouse.org
Cancer Pain Management in Children
A site from Texas Children Hospital regarding children's pain with cancer- a special section deals with the dying child.
http://www.texaschildrenshospital.org/
Preparing for Death
An article about the end of life which talks about the physical, emotional and spiritual changes common to this transition. Written by a Florida hospice organization.
http://www.virtualtrials.com/btlinks/death.cfm
Grief/Bereavement
Compassionate Friends
The Compassionate Friends is a national nonprofit, self-help support organization which offers chapter meetings, articles, brochures, sibling information and links to families who are grieving the death of a child of any age, from any cause.
www.compassionatefriends.org
Grief Warehouse
Site designed specifically for those who lost their child.
www.griefwarehouse.org
My Parents Are Survivors
Site for moms, dads, grandparents, and sibs- tons of information, poetry and links. Interesting stuff on butterfly releases as a memorial.
http://www.moms-dads.com/
Bereaved Parents of the USA
Bereaved Parents of the USA (BP/USA) is a nationwide organization designed to aid and support bereaved parents and their families who are struggling to survive their grief after the death of a child. There are local chapters meetings and an online newsletter.
www.bereavedparentsusa.org
The Centering Corporation
A list of books with short reviews on death and grief.
http://www.centering.org/
Children's Lighthouse Memorial
An interesting idea- for $250 you can have your child's name engraved on a stone which will be placed at the lighthouse.
www.childrenslighthousememorial.org
Memorial Sites
An organization designed to help tell children's stories by posting personal websites. This a way for parents who have developed a memorial website to have their site found by others.
Heavenly Lights Children Memorial
Memorial sites for children who died from childhood diseases and raise awareness.
http://heavenlylights.homestead.com/
A Place to Honor Grief
A place to write a your story about your child (open to all people who have had a loved one die).
http://www.webhealing.com/honor.html
Other Interesting StuffOther Interesting Stuff
Medic Alert
This is the home site for medic alert tag emergency medical information and identification.
www.medicalert.org
Chemo Angels
A site which matches cancer patient up with others who send cards for encouragement- religiously oriented. Many parents have high praise for the Angels.
http://www.chemoangels.com/
TayBears
An 11-year-old's own company to sell hair clips to buy teddy bears for cancer kids.
http://taybearhugs.org/
Make A Child Smile
A site which features three kids a month for people to send cards to- a very moving site.
www.makeachildsmile.org
Song of Love
Non profit that makes personal songs for ill children.
www.songsoflove.org
Caring Bridge
A site for parents to set up a website to keep friends and family updated.
Beautiful Bald Buddies
Soft, washable, hand-crafted,one-foot bald dolls that can be ordered for about thirty dollars
http://www.baldbuddies.com
The Linus Project
Organization that provides new blankets to seriously ill kids- chapters exist across the US and they welcome volunteers.
http://www.projectlinus.org/
The Kimo Bear Project
This organization sends teddy bears to selected hospitals. These teddy bears, dressed in a hospital gown and baseball cap. They can have a central line inserted and can lose its hair.
http://www.kimobear.org/
Spirit Creations
A religiously oriented sites that will send a personalized plate to a child at hospital hospice or at home. It is semi-anonymous. The children will be added to a prayer list. Cost $20.00
http://www.spirit-creations.com/angel1.html
Hannah's Hugs
This is an organization based out of Chicago that has three programs to support families of brain tumor kids (Hugs from Hannah, Bear Hugs from Hannah, and Blankets for Babes).
http://personal.tmlp.com/gonzo/HHHome.html
Inspiration - The Joy Cart
A 12 year old with cancer six (yes, 6) times could made a difference. Now a memorial site.
http://www.thejoycart.com/
Dave Bailey
Well known guitarist in the brain tumor community. He has become a singer/song writer outliving his one year prognosis for a glioblastoma multiforme brain tumor by years. His performances are listed on the site. Great acoustic guitar.
http://www.davidmbailey.com/
Memories of Max- A father's story
This book written by a father that tells the story of the life and death of his son first diagnosed with AML and less than three years later with a rhabdomyosyarcoma. This is also a story about coming to terms. It is from the heart- tissues recommended.
http://www.btinternet.com/~memoriesofmax/
Sunshine Faces
A photographic journey capturing the spirit of innocence, tenacity, courage and playfulness of children- who just happen to be cancer patients.- tissues may be needed here too. This is out of Texas but still worthwhile- they also sell notecards with pictures of their kids to raise funds.
http://www.sunshinefaces.homestead.com/
Chicken Soup for the Soul
From this site you can get daily email stories sent to you. You can also submit stories.
http://www.chickensoup.com/
THON
Penn State College kids raise over 3 ½ million dollars for childhood cancer in 2003 - and have been doing this since 1973.
www.THON.org
Oncology Stat
A site whose mission is improving worldwide cancer care and prevention awareness. This site offers broad based information on all types of cancer.
Review 6/08
http://www.oncologystat.com/
SurvivorshipSurvivorship
Long Term Follow-up Study of Childhood Cancer Survivors
This site provides information on approximately 14,000 survivors of childhood cancer (diagnosed between 1970 and 1986. There is a lot of good information if one searches for it- particularly in the several newsletters.
http://www.cancer.umn.edu/ltfu
National Coalition for Cancer Survivorship
A site to help with local support, insurance options and employment bias. One can get the Cancer Survivors Toolbox free of charge from this site. This site also offers Cancer: Keys to Survivorship on real audio and other programs.
www.canceradvocacy.org
Outlook: Life beyond Childhood Cancer
A site out of the University of Wisconsin designed for the needs of childhood cancer survivors. These issues include financial, educational, employment, and late effects. This site also allows childhood cancer survivors can make their own website from this site.
www.outlook-life.org
http://www.acor.org/ped-onc/survivors/index.html
Survivor's page from the Pediatric Oncology Resource Center Page
This page provides several links on topics of interest to a survivor of pediatric cancers. Long term Follow-up Clinic List- http://www.acor.org/ped-onc/treatment/surclinics.html
Childhood Cancer Survivors:
This is a site off amazon.com where one can get Nancy Keene's book written for parents and patients regarding childhood cancer survivors. Over 30 pages can be seen on this page.
http://www.amazon.com/exec/obidos/ASIN/1565924606/qid=1007167893/sr=8-1/ref=sr_8_5_1/104-6609909-5519111
Listing of College Scholarships
http://www.stmfoundation.org/otherscholarships.html
http://www.acor.org/ped-onc/scholarships/index.html
Late EffectsLate Effects
Late Effects of Childhood Cancer and Treatment
This is an article intended for medical professionals regarding late effects including cardiovascular, cognitive, endocrine, psychosocial, and secondary malignancies. A bibliography is included.
Reviewed 6/06
http://www.emedicine.com/ped/topic2591.htm
Late Effects of Cancer Therapy
A article written for survivors, family and friends which divides the late effects differently in those from chemotherapy and those from radiation. There is an organ based table of effects and mention of additional effects such as psychosocial difficulties and weight gain later in life.
http://webbugs.wustl.edu/patientsandfamilies/articles/late_effects1.htm
St. Louis Children's Hospital Late Effects Page
This page has a few survivors' stories and an article on late effects (including a survey)
http://webbugs.wustl.edu/patientsandfamilies/late_effects.htm
Late Effects:The Heart
This is a good site to look at antracycline(not usually used for BT patients) and radiation (used for BT patients) induced heart disease. The problems can include radiation damage to the heart muscle, the valves, and the coronary arteries. It also talks about the difference between restrictive and dilated cardiomyopathies and how to test for them. (Yes, this is a survivor/parent site)
http://www.acor.org/ped-onc/survivors/cardio.html
Cognitive Late Effects in Leukemia Survivors
This primarily talks of late effects of leukemia patients but is relevant as it is the early craniospinal irradiation data. Worth a look.
http://www.candlelighters.org/treatmentcoglateeffects1.stm
Cognitive Late Effects to the Brain
The second part of the candlelighters paper.
http://www.candlelighters.org/treatmentcoglateeffects2.stm
Behavior Problems of Children Who have undergone Treatment for Brain Tumors
An article written for childhood Brain Tumor Foundation.
http://www.childhoodbraintumor.org/BehaviorProblems02rev.htm
This is an article written for medical professionsls.
Late Radiation Deafness Associated with Treatment for Medulloblastoma and Brain Stem Tumors
Written at a high level- but by the time you get to this probably you will be well versed in medical language.
http://www.virtualtrials.com/btlinks/lradeaf.html
Secondary Maliginancies
Some treatments can potentially cause a second cancer- this article talks about the risk and some prevention ssues.
http://www.candlelighters.org/treatmentSecondMalignancies.stm
Late Effects to the Thyroid Gland
Another of Nancy Keene's Candlelighters articles.
http://www.candlelighters.org/treatmentthyroid.stm
Bone Health After Childhood Cancer
A candlelighters article which highlights the problems our kids may have with their bones and some recommendations.
http://www.candlelighters.org/treatmentlateeffectsbone.stm
Endocrine and Cardiovascular Late Effects among Adult Survivors of Childhood Brain Tumors
A paper written for medical professionals in 2003 in the journal Cancer.
http://www.cancer.umn.edu/page/docs/gurney.pdf
Late Effects to the Teeth
http://www.candlelighters.org/treatmentlateeffectsteeth.stm
Cataracts
Many brain tumor children are at risk for cataracts from radiation and from steroid use. This article is written at a high medical level.
http://www.emedicine.com/aaem/topic96.htm
Non-Age Related Cataracts Treatable with Surgery
A short article about cataracts.
http://healthlink.mcw.edu/article/956868358.html
.Endocrine SitesEndocrine Sites
Growth and Development: Endocrine Issues Facing Pediatric Brain Tumor Survivors
This is a one hour archived lecture from 2/2002. Check site for more recent topics
http://www.pbtfus.org/InformedParent6.htm
An Interview with A Pediatric Endocrinologist
This is an interview written for the Childhood Brain Tumor Foundation.
http://www.childhoodbraintumor.org/christie.html
The Magic Foundation
This is a national non-profit organization dedicated to growth disorders.
http://www.magicfoundation.org/
Growth Hormone Deficiency
An article written for medical personal- high level of technical writing.
http://www.emedicine.com/ped/topic1810.htm
The Hypothalamus and Pituitary Gland
A fairly parent friendly site that goes over the anatomy and hormones produced. This is a good place to start if you need to know about normal physiology and anatomy.
http://arbl.cvmbs.colostate.edu/hbooks/pathphys/endocrine/hypopit/index.html
Growth Hormone Replacement Therapy in Children with Medulloblastoma: Use and Effect on Tumor Control-
An abstract by Packer that states growth hormone replacement therapy does not increase the rate of recurrence. The full article is Journal of Clinical Oncology, Vol 19, Issue 2 (January), 2001: 480-487.
http://www.jco.org/cgi/content/abstract/19/2/480
Advances in Human Growth Hormone Replacement
General overview of Growth Hormone- not specific to cancer kids.
http://neurosurgery.mgh.harvard.edu/neuroendocrine/e-f-944.htm
Diagnosis and Treatment of Hypothyroidism
A fairly straight forward, very general site.
http://www.healthy.net/asp/templates/article.asp?id=528
Childhood Head and Neck Irradiation: American Thyroid Association
A short article on the history and concerns of radiation treatments on the thyroid when used in children. Article has been moved. Check site for more current topics.
http://www.thyroid.org
Professional OrgannizationsProfessional Organizations
American Society of Pediatric Hematology/Oncology
A site designed for ASPH/O members and others who wish to learn about our Society, the specialty of pediatric hematology-oncology, and current advances in treatment, research, education, and advocacy in childhood cancer and blood disorders.
http://www.aspho.org/
Association of Pediatric Oncology Nurses
The Association of Pediatric Oncology Nurses (APON) is the leading professional organization for registered nurses caring for children and adolescents with cancer and their families.
www.apon.org
American Society for Therapeutic Radiology and Oncology
Some information about radiation oncology-FAQs.
http://www.astro.org/
Association of Pediatric Oncology Social Workers
Pediatric Oncology Social Work as a specialty discipline is committed to enhancing the emotional and physical well being of children with cancer and their families.
www.aposw.org
American Occupational Therapist Association
This is a professional organization site for occupational therapist.
www.aota.org
American Physical Therapist Association
This is a professional site for physical therapists. Educational brochures available for patients.
www.apta.org
American Speech-Language-Hearing Association
This organization offers information on software and augmentative communication as well as brochures on speech and language disorders.
www.asha.org
Association of Educational Therapists
This is a professional site for educational therapist.
www.aetonline.org
Child Life Council
A professional organization for child life specialists.
www.childlife.org
