Stories abound of families fighting childhood cancer with near superhuman quantities of hope, energy and help.
They depict close-knit family support, enthusiastic community action, and a conquering of the human spirit over this pernicious enemy.
Sadly, this is not the experience of most families.
Childhood cancer affects people from all walks of life.
From those barely surviving on less than $1 a day, to the financially secure, from the single parent to the happily married couple; from the single child to the large family; from the family living in a tight knit community to newly arrived strangers; from families with a strong faith to those with none at all – cancer does not discriminate.
When faced with the crisis, most parents discover reserves of strength previously unknown to them. They survive the immense trauma, and are often positively changed by it. However, self-sustained heroism is an unreasonable expectation for any individual or family under stress.
Recognize Your Needs
Before your child’s diagnosis, you may never have felt the compulsion to ask for outside help before. However, nothing can prepare you for the ordeal ahead, and retinoblastoma is not something you can, or should have to, face alone.
This cancer will heap immense physical, emotional and financial demands on your family, and you will need much support to field them. Recognizing this early will help you protect and sustain your family through very difficult times.
Learn to Ask and Accept
Asking for and accepting help with grace can be difficult if you have never had to rely on others before, but it is important you learn to do so. Most relatives, friends and community members want to help in any way they can, but they need to know how they can help without intruding.
In a time of crisis, it is natural to turn to family and friends for support and help. Remember though that their ability to respond is influenced by events in their own lives. Respect their limitations and commitments, as you do your own.
Keep your options open and stay receptive to offers of help. Support will often materialize in the most surprising and welcome forms when least expected, to encourage you along the way.
Tell People How They Can Help
Your own feelings of shock, anxiety, fear, anger and impotence will also be felt by relatives and close friends as they hear the news of your child’s diagnosis. People will inevitably want to help, but may not know what to do or say. You will likely hear many times “please let me know if there is anything I can do”.
Give your family and friends prompts of how they can support you. Add some suggestions to your website or email updates, or write a list and place it on the notice board at your place of work or worship. You could also add a link to the Retinoblastoma Resource section for friends and family.