Cancer diagnosis propels families into the unknown. Rediscovering life beyond therapy can be challenging.
Even when enucleation surgery cures the child, and no further treatment is needed, families mourn the loss of their child’s eye. The grief they feel may linger for months or years.
After diagnosis, ending therapy is often the most traumatic time for parents, and the anticipation begins weeks before the final treatment.
The crisis of treatment is replaced by unspoken fears of relapse that friends cannot understand.
Most families struggle to rediscover normal life in the midst of this emotional turmoil. For many, recapturing the days before diagnosis is impossible, but you can regain a calm, positive life beyond treatment.
Rediscover Family Life
Months or years of intensive therapy gradually mutilates family life beyond recognition. This may not be obvious until treatment ends and you try to return to the life you knew before cancer. This dramatic change can be a traumatic discovery, sometimes more upsetting than the cancer itself.
As constant hospital appointments, procedures and treatments subside, you will begin to settle into a regular routine of family life. Take time often to be together, to “rediscover” one another.
Eat together, walk the dog together, go away for a family holiday. Sharing time with one another will help you regroup and look forward to the future together.
Find a Balance
Treatment is physically and emotionally draining for the whole family, but actively fighting the cancer is a great comfort to many parents. Treatment is the security against an unseen enemy. When it ends, parents often feel helpless and lost.
Fears of relapse and second cancers continue even after years of clear EUAs and MRIs. Most parents experience periods of anxiety about headaches, leg pain, unexplained lumps and other symptoms. Talk to your child’s doctors about the risks, and what to do if you have concerns.
Try to accept and embrace the uncertainty of your child’s future. Knowing the risks, what to look for and what to do if you are concerned can help you find a healthy equilibrium between high vigilance and letting go of your fears.
Give Back
Contributing to the cancer community is a deep salve for many families.
Raising awareness of leukocoria enables parents to work through feelings of guilt and anger about not recognizing the sign early.
Reaching out to others in need helps grow hope from the depths of despair and fear, puts life in perspective and is very empowering.
If you would like ideas of how you can give back to the global retinoblastoma community, especially children who currently have little chance of surviving curable eye cancer, please visit our Programs and Give Hope sections.
Walk Away
Some families feel they need to draw a line under their child’s cancer experience, to disengage completely from the retinoblastoma community. This is a normal response and very healthy. However, it is essential that you educate your child about her cancer history and risks as she grows up, so she can advocate for her own healthcare and that of her children.
Conflict can arise when one parent wishes to be very involved in the retinoblastoma community while the other parent or affected child wishes to walk away.
Take time to talk with one another about how you feel and why you wish to engage or not. Understanding and respecting one another’s feelings and needs will help you establish healthy boundaries together and diffuse potentially difficult situations.
