A Day Well Spent – California Family Day
Monday September 2, 2019
Local in-person support specific to the needs of families and survivors affected by retinoblastoma is much needed but very rare. Lisa Hester, WE C Hope USA Director and mother of a young Rb survivor, reflects on the second WE C Hope California Family Day, held in August 2019, the seeds of our mission to bring this support to all across America.
Family Day was an opportunity for children diagnosed with cancer and their siblings to run free and revel in the simple joy of being children.
Why A Family Day in California?
On Saturday, August 3, 2019, World Eye Cancer Hope USA celebrated our second annual Family Day at the Marina Community Center, Seal Beach. Nearly 60 parents, children, survivors, extended family and close supporting friends attended – it was a wonderful opportunity to reconnect with friends and welcome new families to our community.
The day was especially meaningful to WE C Hope president, Marissa Gonzalez, who has been adjusting to life with low vision in her remaining eye. “Being able to organize this event and have over 50 people attend was truly a dream come true. I am so thankful to be active in the retinoblastoma community again, and continue contributing to our wonderful charity. A huge thank you to board members Kristen Small, Erika Crespo, and Lisa Hester, along with their families, for making this event a huge success.”
The seeds of the Family Day took root back in June 2017, when Marissa spoke during a panel session at the first Retinoblastoma Family Day hosted by Children’s Hospital Los Angeles, for patient families. Four months later, she hosted the first National Retinoblastoma Family Day on behalf of WE C Hope, during the One Rb World Meeting in Washington D.C.
Marissa had no support like this during her treatment or recovery. She was in her late 20s before she met another survivor. Her mother, who also attended, knew no other parents whose children had eye cancer. There was no opportunity for encouragement or reassurance from those further along on the journey when her daughter faced the removal of her eye, no friends with whom she could compare notes or ask for advice when struggling with medical procedures or the ordinary parenting trails of life, complicated by childhood eye cancer.
Information and support meeting specific needs of families and survivors affected by retinoblastoma is still not widely available today. Lack of appropriate, timely support can negatively impact a child’s medical care, and the physical and mental health of all family members. Those impacts can remain decades after treatment has ended.
The CHLA and One Rb World Family Days had a profound impact on Marissa and her mother. After meeting other parents and survivors, she became passionate to help move forward our goal of developing family groups across the USA. She believes in WE C Hope’s vision that ultimately, every family in America will have access to face-to-face support close to home.
Our USA Chapter President of WE C Hope, Marissa Gonzalez, took advantage of the amazing face painting artist!
Responding to the unique experiences and needs of families and survivors, we aim to develop a network of state and regional groups across the USA. Each offering social activities, information, practical support and local advocacy.
That’s a big goal for an uncommon cancer in a big country. So we’ve begun small with a pilot group in California, through which we can learn and develop. We hope that by keeping our focus small as we develop a process for good family support, we can better serve many families later, across a wide geography with limited funds.
This summer’s Family Day encompassed current patients as young as 7 months, to adult survivors, and many ages in between. Marissa says “I was especially touched to meet Shane Aguilera, who is beginning his freshman year of college and is moving into the dorms. He reminded me that there is no challenge we survivors cannot tackle.”
This bright playground created a perfect venue and attracted a lot of activity. The large grassy area was ideal for kids to run around and fly kites. The patio area provided a great space for blowing bubbles and play with chalk.
The Road We Travel
We didn’t quite know what to expect when the nine of us loaded into our van and made the three hour drive to Long Beach. We knew this would be a gathering of other families, like ours, who were at one time blind-sided by the words, “Your child has cancer.”
Each family who has been on a journey with a Retinoblastoma diagnosis has had a different road to walk. Some found treatment locally, some had to travel for years that seemed to drag on. Some had to struggle through the process of their child losing an eye, others made treatment decisions regarding chemotherapy, and some have had to do both.
Some survivors have had long-term complications, while others had very little in the way of long term side effects from treatment. No matter the case, every family has had their lives significantly altered by the diagnosis of Retinoblastoma.
RB Warrior Angel and his brother, Jesus, create with Play-Doh. Their whole family wore the same matching shirts, including aunt, uncle, and cousins!
One Big Family, Many Journeys
We were greeted with smiles and hugs and warm welcome. There were tables set up and food ready to devour! Tables in the back of the room were thoughtfully prepared with activities like playdoh for kids. The meeting space was perfect for our gathering, and had outside access to a patio spread with bubbles and kites and chalk, and a playground all within sight of the meeting area.
As families began to gather, the president of the USA Chapter of WE C Hope, Marissa, (also a dear friend of mine), welcomed us. She shared the story behind Daisy’s Eye Cancer Fund, which became World Eye Cancer Hope (WE C Hope). We listened as she bravely told her own story – and reminded us that every story is different.
Each family was then given a turn to share their own Retinoblastoma story. A courageous family shared how their daughter was diagnosed less than a month prior to our gathering. All of us longed to be available to them as we remembered those first days and weeks of processing this life-changing diagnosis.
As the parent of a child with retinoblastoma, these were some of the most satisfying moments of the day for me. Meeting other families, hearing their unique stories, and just letting their words remind me that we aren’t alone in this journey.
I loved gaining strength from hearing the journey others have taken, meeting teenagers who have walked through these challenges and aren’t afraid to live life to the fullest.
I enjoyed sharing our own story and our experiences, in hopes of encouraging other families.
Seeing our children running around, making new friends brought such joy. Their simply being with other families for whom this crazy life of EUA’s, chemo and constant travel to and from hospital is normal.
Evelyn is smiling because she made two new fairy friends at Family Day. The three ran around together with their different colored wings, playing with bubbles and chalk, and enjoying the playground.
We didn’t know what to expect when we climbed in the van that morning. But I believe we accomplished something very special as a collective group on Retinoblastoma Family Day. We created an environment where our experiences were shared, valued, and understood.
We laughed! We ate and played! And we gave value to each unique journey that has been walked.
To me, that was a day well spent.
The whole group (we are missing some who had to leave early), including parents, children, friends, and extended family members. Nearly 60 people attended the family day.
About the Author
Lisa Hester is mom to seven (soon to be eight!) amazing kids and wife to one handsome and extremely brave man.
Their youngest child, Elijah, was diagnosed with retinoblastoma at 7 weeks of age. His right eye was enucleated at that time. The next two years or so following diagnosis was spent fighting for his left eye, in which he does retain vision. “This last year, Elijah has suffered from neuropathy in his toes and feet and we are still struggling to find him the help that he needs. We are so grateful for his ‘built-in’ support system of siblings, and we love the education, support, and community that comes from WE C Hope”.