Childhood cancer is a rare but devastating diagnosis for families. Children may be hospitalized within hours, and parents may have an overload of information and options to consider before there is time to bring in any support or help for the family or child.
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.
Childhood cancer is inclusive and reflective of the diversity of our society. It is a critical need to have competent interpreters and translators for Deaf families and those whose primary language is not English. Disparities in access to healthcare may mean the difference between life and death for a child. Medical professionals may not respond as quickly to the concerns of parents or symptoms of children when parents are culturally different, ethnically diverse, or have a disability.
When a child is diagnosed, anglo families may be allowed wider privileges and more consideration, and endure fewer security delays. If it were possible, these families would be that much more tired as the weeks go by. Fortunately, hospital staff often reflect the diversity of a community, as do many of the strongest advocates for families and children who reach back to support every family in need of them.
Some friends, family members, neighbors and coworkers are unable to provide support or encouragement to a child with pediatric cancer or their families. They may make dreadful, insensitive and even cruel comments. This is not you. Cancer makes life awkward, and sometimes ridiculous. Being kind, discreet, and keeping the focus on the child and family will move you in the right direction. Practical help is much more valuable than finding exactly the right words to say, and standing in silent company is much more comforting than sharing opinions or suggestions based on ignorance. A nonjudgmental ear, confidentiality, and following up on promises will be appreciated.
A few 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, or loss. The truth is, there is never enough help.
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 or 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
ACS - Find a Pediatric Cancer Center
Meet the 'momcologists': The fiercest warriors against childhood cancer
Types of Childhood Cancer
Just Heard the News and Help During Treatment
ACS - Helping Children Deal with a Cancer Diagnosis in the Family
When a Child has Cancer
Books About Cancer for Kids
Parents of Children with Cancer Online Support Groups
Thirty percent cuts to children’s cancer research? Unacceptable
Back to School Program Helps Kids with Cancer
Pediatric Support services
Back to School Program
A resource for parents with cancer and their families
ACS - Financial and Insurance Issues When Your Child Has Cancer
Free Or Low-Cost Family Housing at Cancer Centers
Financial Assistance, Childrens Web Sites
Cáncer en la familia: los niños frente al diagnóstico
Spanish Language Resources and Information
Family Village Information on Childhood Cancer
CNN - Symptoms of Leukemia
Symptoms and Treatment - Leukemia
Leukemia in Down's Syndrome
Down's Syndrome and Leukaemia
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:
Advocating for Children in Hospitals
Melissa Riggio Made a Difference
Pain Management for Children
Pain Relief for Childhood Blood Draws, Injections or IV Lines
Soothing Children's Fears
Sun Blocking Clothing, and Rit Sunblock Laundry Rinse
Asking More from Medical Professionals