Life changes dramatically when the hospital becomes home. One mother told me that she was so grateful for the doctors, clinic, treatments and long term survival rates at first, she felt she could do anything asked of her.
She thought she could sit by her daughter's bedside watching her breathe as she slept and find the energy she needed from thankfulness. But as the days and then weeks wore on, she could become so physically and emotionally exhausted that she had to rely on any help and support that family, friends and her new community offered.
Two years ago, a dear friend wrote to me asking how to build a circle of friends around the family of a little boy newly diagnosed with cancer. By the time I finished a web search and contacting families to ask what was most helpful when their children were in treatment, my friend already had a list of loved ones and neighbors who stepped in to form a support network for that child and his family.
What I found most touching was how each person respected the privacy and special needs of the little boy and his family. The help and visits were scheduled so that the family would not be overwhelmed, and each person in the family was remembered in the main plan. I loved that they scheduled in 'ordinary time as a family' in that plan.
It was a comfort to me to be included in the email updates that my friend sent so that we could all share our concerns and celebration without intruding. Some families create web pages to keep their support circle informed. I wish every family found all the help and support that is needed during the months after diagnosis, during treatment, and throughout recovery.
Even with all the support we can give, children with cancer and their families face many challenges, great and small, over a long period of time. There are no quick and easy treatments, and a dozen unexpected complications can spring up when they are least expected. Sometimes the most we can do is to stand by, pray and hope, and be ready when we are needed.
There are some fine organizations that provide information, resources and support for families and friends who need to learn about childhood cancer and treatment. The leading pediatric cancer care centers are aware of the most up to date and effective treatments available, avoiding unhelpful navigation through a maze of outdated or unreliable internet sites.
Browse at your local bookstore, public library, or online retailer for books about childhood cancer, and stories about children with cancer and their families, like Butterfly Kisses and Wishes on Wings: When someone you love has cancer...a hopeful, helpful book for kids,
Chemo Girl: Saving the World One Treatment at a Time, or Cathy's Hats.5 Things Not to Say to the Parent of a Child with Cancer
http://getwhatyouget.blogspot.com/2013/09/5-things-not-to-say-to-parent-of-child.html
ACS - Find a Pediatric Cancer Center
http://www.cancer.org
Types of Childhood Cancer
http://www.curesearch.org/aboutcc/types.aspx
Just Heard the News and Help During Treatment
http://www.curesearch.org/parentsfamilies
ACS - Helping Children Deal with a Cancer Diagnosis in the Family
http://www.cancer.org
When a Child has Cancer
http://www.cancercare.org/Children/Childrenmain.cfm
Parents of Children with Cancer Online Support Groups
http://www.cancercare.org/Counseling/CounselingList.cfm?c=373
Thirty percent cuts to children’s cancer research? Unacceptable
http://thehill.com/blogs/congress-blog/healthcare/210091-thirty-percent-cuts-to-childrens-cancer-research-unacceptable
Back to School Program Helps Kids with Cancer
http://www.newswise.com/articles/back-to-school-program-helps-kids-with-cancer
Pediatric Support services
http://www.dana-farber.org/pat/support/pediatric/default.html
Back to School Program
http://www.dana-farber.org/pat/support/back-to-school/default.html
Family Connections
A resource for parents with cancer and their families
http://www.dana-farber.org/pat/support/familyconnections/default.html
ACS - Financial and Insurance Issues When Your Child Has Cancer
http://www.cancer.org
Free Or Low-Cost Family Housing at Cancer Centers
http://www.cancer.org
Financial Assistance, Childrens Web Sites
http://nationalchildrenscancersociety.com/faq/index.html
Cáncer en la familia: los niños frente al diagnóstico
http://www.cancer.org/docroot/ESP/content/ESP_2_1x_Cncer_en_la_familia_los_nios_frente_al_diagnstico.asp
Spanish Language Resources and Information
http://www.cancercare.org/EnEspanol/EnEspanolmain.cfm
Family Village Information on Childhood Cancer
http://www.familyvillage.wisc.edu/lib_canc.htm
LiveStrong.org
CNN - Symptoms of Leukemia
http://www.cnn.com/HEALTH/library/DS/00351.html
Symptoms and Treatment - Leukemia
http://cancer.about.com/od/leukemia/Leukemia.htm
Leukemia in Down's Syndrome
http://www.riverbendds.org/rajantie.html
Down's Syndrome and Leukaemia
http://www.riverbendds.org/lrf.html
Down Syndrome Mutation Helps Leukemia Survival
http://www.webmd.com/parenting/news/20050201/down-syndrome-mutation-helps-leukemia-survival
Read about The Valerie Fund Children's Centers for Cancer and Blood Disorders, where 5,000 children and their families are treated and supported each year in eight New Jersey cities, at the website:
https://www.thevaleriefund.org/our_programs.asp
Advocating for Children in Hospitals
http://www.bellaonline.com/articles/art66329.asp
Melissa Riggio Made a Difference
http://www.bellaonline.com/articles/art56423.asp
Pain Management for Children
http://www.bellaonline.com/articles/art51895.asp
Pain Relief for Childhood Blood Draws, Injections or IV Lines
http://www.bellaonline.com/articles/art51944.asp
Soothing Children's Fears
http://www.bellaonline.com/articles/art35602.asp
Sun Blocking Clothing, and Rit Sunblock Laundry Rinse
Asking More from Medical Professionals
http://www.bellaonline.com/articles/art39121.asp
