Loving Without Fear

Sunday June 17, 2012

A survivor of Bilateral Retinoblastoma, our CEO, Abby White, considers the challenges and blessings of living, connecting, communicating and loving within a social media savvy world retinoblastoma community.

Treasure Flower - a rare species of daisy with a bright yellow core surrounded by a darker ring that radiates into the fiery orange and yellow petals.

People who know me well will know I am not often lost for words.  I could talk the hind leg off a donkey, given the opportunity.  Inevitably, retinoblastoma is a regular topic of conversation.  I can expound for hours on the various challenges of caring for children, their families and adult survivors, particularly those in developing countries.  Yet I struggle to know how best to respond to the individual family in distress.

Our world is constantly shrinking through social media innovation.  Fifteen years ago, we were most likely to meet other affected families in the waiting room on EUA days, or at a once yearly family day – if we were lucky enough to live in a country with a family support program.  Five years ago, families were connecting through eGroups, exchanging emails on a host of topics.  Today, our communication through Facebook is instant and more active than ever before.

First through the eGroups and now through Facebook, I have connected with many wonderful friends who had retinoblastoma in childhood.  I am blessed to be part of this community, where experiences and concerns can be shared and responded to with understanding.

Sadly, this wonderful community has also opened my eyes wide to the life consequences of having a constitutional RB1 mutation.  Too many of my friends around the world have been taken by second cancers, and too many are fighting for their lives right now.

As a survivor of bilateral retinoblastoma, I am challenged to be supportive of dear friends facing their own second cancer journey, without being swamped by fear for my own future.  I imagine this is a similar balancing act for parents whose children are in treatment now, as social media increasingly brings us into contact with families struggling to access appropriate care for their child.

Human nature drives us to compare notes.  She had radiotherapy when she was seven months old, just like me – now she has leiomyosarcoma that began with only stomach pains…  the cancer was only found to have spread outside her son’s eye because he was constantly vomiting… Next time I have stomach cramps, will I immediately fear I have leiomyosarcoma?  Will you immediately worry your child has extraocular cancer the next time they are sick?  The connection is so easily made, and fear is contagious.

I try to remember we are all individuals.  Hundreds of variables exist to diversify our experiences.  What type of radiation did my friend have, and how much?  What type of genetic mutation does she have?  The environment she lived in, the foods she ate…  All these things could have affected her risk.  Her genes are not my genes.  We are two individual people.  I learn from her experience and will be more cautious in following up unexplained symptoms, but I must not allow the fear of her experience to control my life, or my ability to be an encouragement to her in her time of greatest need.

What about the parent whose child is fighting cancer outside the eye?  The fear may be so much more potent for parents supporting their own child through treatment.  Yet again we must remember that our children are all individuals.  Many factors affect their experience – their age and stage of cancer at diagnosis, genetic mutations, access to doctors experienced in the care of children with retinoblastoma, prescribed treatments and whether they were completed, quality of follow up care, socioeconomic circumstances…

Connecting with other families and adult survivors enriches our lives and builds hope.  Each shared experience deepens our awareness of the challenges we face in providing best possible care for all affected by retinoblastoma.  Yet, we also risk being overwhelmed by the information we gather in the process.

As our retinoblastoma world shrinks, we have an increasing need to broaden our knowledge and understanding.  We have a responsibility to equip ourselves so we can respond with love while keeping our own fears in check.

Most importantly, we must each seek what we need as individuals and as a community to be an encouragement and strength for those facing the most arduous challenges.

The task isn’t easy – I frequently must discipline my mind to stop its rambling ways, but knowledge certainly eases the way, as does talking with other friends who understand my concerns.

If you are a parent or survivor with similar concerns, please share them.  Our wonderful online retinoblastoma community is rich with knowledge, experience and understanding.  I find the insight of others invaluable, a healthy reality check to temper my own worries.  Chances are that someone else has the same thought or question and a therapeutic conversation will evolve, giving hope and peace.

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