Reflections of Camp Sunshine by Rb Moms
Monday July 8, 2019
A diagnosis of childhood eye cancer impacts families in so many ways, during the immediate crisis of treatment, and years after “cure”. Knowing you are not alone on the journey is the greatest comfort and strength. Five mothers reflect on the healing power of Camp Sunshine, a retreat that cares for the entire family when cancer strikes.
Contributors: Lori Banos, Donna Castagna, Jessica Givens, Kristina Jordan and Tina Montone.
So Much More Than a Summer Camp
Families, camp staff and volunteers gather at the Wishpond for the emotive Wishboat Ceremony. During the week, children decorate their own wishboat, and add their personal thoughts, concerns and wishes. On the last evening at sunset, they set the candle-lit boats adrift on the wishpond. For many children, a symbolic gesture of letting go, of leaving their burdens on the water as they prepare to return home.
Camp Sunshine, on Sebago Lake in Casco, Maine, was established in 1984 as a retreat for children battling cancer and their families. It has grown since then, and in 2007 a session dedicated to Retinoblastoma was included on the schedule.
The name is misleading as Camp Sunshine is so much more than a camp. It truly is the light and sunshine in our dark and stormy days. In addition, Camp Sunshine is funded 100% by donations and is staffed by volunteers. It would not continue without the generosity and kindness of so many who give financially, and their precious time.
Each session has a predictable schedule. Parents and children find respite and therapy disguised as activities, group meetings, competitions, costume parties, talent shows, canoeing and kayaking, etc. You don’t realize how much you needed this until you pack up to return home; back to work, school, doctor visits, treatments, blood draws and medical procedures. The only cost to families is transportation to and from camp – or Portland, from where Camp Sunshine provides a local shuttle service.
The Need for Retinoblastoma Week
Retinoblastoma is a cancer in the eye. Many children have to have one or both eyes removed to prevent the cancer spreading and save their life. They have to have intensive treatments such as chemotherapy or radiation. They experience frequent blood draws and hospital stays.
Some children have a genetic form of the cancer which will potentially be passed on to their own children someday and puts them at increased risk of second cancers throughout life. This requires lifelong follow up with many doctors.
Various treatments have risk of significant long term side effects, including hearing loss, neuropathy, primary headaches like migraine, dry eye, cataracts, vision problems, and facial deformity.
Salvaged eyes are filled with inactive cancerous tumors as there is no way to surgically remove the cancer from the eye without removing the eye. This means the eye most be examined very regularly under general anesthesia to check the cancer is still inactive. Relapses are common, requiring more treatment to save the eye and protect the child’s life, and this cycle can continue for several years or more throughout early childhood.
My daughter, Sena, was diagnosed with retinoblastoma in both eyes. She was four months old and the only baby diagnosed in Iowa that year. I felt isolated and alone. She went through 9 months of treatment and had her right eye removed.
As Sena grew older, she felt the same isolation. As soon as we get to camp, we relax and breathe a sigh of relief. It feels like home and when it’s over, we count the days until we can return.
Lori, Noah and Sena at their first Camp Sunshine week in June 2007, and most recently in June 2019.
Lori Baños is a Teacher for the Visually Impaired and founder of Rb Moms, a Facebook group for mothers of children with Retinoblastoma. She lives in Iowa with her husband, Juan, and two adult children, Noah (19) and Sena (18).
A Healing Winter Wonderland
My daughter was diagnosed with eye cancer at the age of 11 months. Every year we go to Camp Sunshine. The camp is designed for kids diagnosed with cancer and their families to get away from the everyday stressors that accompany a child’s medical problems. It is a rare week filled with other kids and adults going through the same challenges as my daughter and myself.
My daughter and I have been going for 12 years now. When she turned 16, we became Camp volunteers, something we feel is a great honor. It is such a rewarding feeling to be able to give back to Camp Sunshine as they have given to us for many years.
Camp Sunshine is a magical place. Weekly sessions throughout the year offer many fun filled activities that coincide with every season. In the summer there is swimming, kayaking, paddle boats, volleyball etc. In the winter, there is skating, sledding, and skiing to name just a few – there is so much more for everyone to be a part of.
As a parent, one thing that stands out most for me is the facilitated adult group. Parents get together and discuss experiences and what we are going through, and we are all there to support each other. That is very difficult to find outside of camp.
One of my fondest memories from camp was the day assigned for the weekly skiing trip to the mountain during a winter session. Unfortunately, the conditions were too bad to drive to the mountain on that cold, snowy day. So my daughter and I decided to instead go sledding at the camp-made luge. We sledded for hours through the heavily falling snow.
That was the first time since her diagnosis we had so much fun and lots of laughter. We share and treasure this memory, and both agree we will never forget it. That was the day we realized Camp Sunshine is a very special place to heal and bond, so much more than we ever thought we could have.
Camp has been very beneficial to me and my family. When we are there we feel as though we are normal. Everyone is going through, or has been through, everything we have, and we all understand each other. We all give each other the much needed support that sometimes we can’t find outside of camp. Attending camp for all these years has been life changing for us, especially my daughter. Outside of camp, she always has a hard time feeling like she fits in because she has a prosthetic eye from the cancer, but at camp she feels no one judges her or looks at her any differently.
These are experiences you cannot put a price tag on. It has changed my daughter forever. If you ask her today, she will say Camp Sunshine is 100% the only place in the world she feels happy and herself. We have met so many people over the years of attending camp and some of these people are our closest friends.
Donna and her daughter pause for a photo with Sully while volunteering at Camp Sunshine Rb Week, June 2019.
Donna Castagna lives in Cranston, Rhode Island. She is married and has one daughter, who is in college. She works as a CNA at a hospital in Providence, RI. Donna loves spending time with her daughter and volunteering at Camp Sunshine in Maine.
Sunshine Dried Up the Rain
A poem about Camp Sunshine, by Kristina Jordan
There comes a time when we face the darkest parts that life has to offer.
We make decisions based on desire and love.
Then beauty is born in the form of a child.
Your life feels full because your view changes
The world is seen differently through a child’s eyes.
What do you do when that world or your child’s world has been shattered by a six letter word,
Uttered from the lips of a stranger?
The earth is moving, only you are standing still.
Stopped right in your tracks, can’t breathe because fear has begun to set in.
The question why is standing on your shoulders.
The strength you build is an armor you take off behind closed doors
Tears flow where no one can see.
Hope has a name, walking through a journey you didn’t choose, the one thing you need is understanding.
Hope is bright, healing begins in a group, from every walk of life.
Their journey is the same, yet different in so many ways.
Hearts unite, in a place where real dreams are made.
Children filled with excitement, to walk into the sun, only after fighting the greatest battle they could ever face.
Children who know they will be accepted, that they aren’t alone.
Their journey looks like their best friend’s, learning coping skills just because their friend has a prosthetic just like them.
Here is where the best friendships are created, here is normal, here is free.
Walking the path laid before us, year after year we unite as a team, ready to help the ones who may walk this journey next.
To love the next mom with tear stained cheeks, the dad beside himself feeling powerless.
We could ask why, but the answer is simple. We were meant to meet at this point in life.
I thank God for you. The sunshine dried up the rain because love was found in the midst of a dreary place. This is how changing the world starts.
Kristina and her daughter stand together at Sebago Lake, on which Camp Sunshine is located, ready to enjoy the array of water activities.
Kristina Jordan lives in Missouri with her husband and her daughter. She has recently published a book of poetry called Unbound, available on Amazon.
Respite and Community at Camp Sunshine
Camp Sunshine provides two things for me and my family, respite and community.
A respite from going to doctors or therapy. Our family spends no less than 4 visits a month at different doctors or therapists. I don’t think about it every day, but when I have an entire week not to think about it, it’s amazing.
The families who attend Camp Sunshine have all had an experience similar to our family. They’ve been terrified when hearing a diagnosis. They’ve had to make decisions about care. And they’ve had to let doctors and nurses, who are strangers, care for their children, and themselves. Camp Sunshine is a place of sharing and acceptance. It’s a place where even the stormy days bring Sunshine!
Jessica S Givens, MA is a mother of three and a teacher. She lives with her husband and three boys in St Louis, Missouri. They try to visit Camp Sunshine annually.
Epic Growth and Recovery Through Community
Camp Sunshine, is by far, the most critical and wonderful week of our year, every single year we have attended. However, the retinoblastoma session of June, 2019 was completely epic. Although that sounds overly dramatic, it is accurate. This was the 5th retinoblastoma session we have participated in. Our first year was in 2012, when our son, Maximillian, was 11 months old.
Max was diagnosed with bilateral retinoblastoma when he was 4 months old. Not comprehending the magnitude of this cancer (which has a high survival rate), I imagined 6 months of chemotherapy, a few eye surgeries, and this episode of our lives would be in the books. I wouldn’t even consider myself a cancer mom.
However, I quickly learned what “scan-xiety” looked like during every MRI and EUA. I learned that my son, my only son, would not only carry on the family name, but possibly the Rb1 cancer gene. I learned that we are now in the world of blindness, even though he was only half blind. But as I like to say, half visual. Later in our journey, I learned the fear of what a potential relapse felt like.
I learned what it felt like to be precautionary and enucleate (remove Max’s eye) because the tumor wasn’t visible. Dr. Shields, our ocular oncologist, was uncomfortable leaving the eye when she couldn’t get a clear picture of the tumor. I trust her completely. On the flip side, I felt what it was like to lose a battle (his eye), but win the war (cancer) 4 years after diagnosis.
I learned that my son would fall into the statistics of hearing issues when one of the chemo drugs that is audio-toxic caused high frequency deafness. He wears hearing aids in school.
Lastly, I learned of the aftershock that rips through the family years after the cancer is defeated and is in the past. The aftershock that leaves everyone reeling and falling in a tailspin. This tailspin is also known as alcoholism or addiction. My husband, over the course of five years, fell down that slope into darkness.
During this journey we learned lessons, and we attended Camp Sunshine. During those sessions I learned about resilience from families who have had a very similar experiences – some worse, some better. We discussed medical procedures, doctors’ practices and opinions. We swapped funny stories about prosthetic eyes, with no judgement and no sympathy.
We have met so many people at so many different stages of their retinoblastoma journey, which has absolutely and undeniably helped us through situations throughout the years. This therapy cannot be found anywhere else. This type of therapy comes in many parts and pieces, delivered in the package known as Camp Sunshine.
The Camp Sunshine “therapy” package includes formal sessions to discuss retinoblastoma stories, feelings, etc. facilitated by the Psychosocial Director, a professional social worker. However, it also includes informal conversations between campers: adults, teens, adolescents and children. Interaction during waterfront time, over crafts, at mealtimes, up on the ropes course, during the talent show, at the volleyball game, throughout game day… Those relationships build, and we all become a tribe that is critical to our healing and continuing on our journey. Because we need one another, in so many ways, to keep growing.
Why was the 2019 Rb session epic for the Montone family? My son, at 7 years old, had a discussion with other 7-year-old boys, realizing they are all eye cancer survivors, and some also have a prosthetic eye. It amazes me, that he has been exposed to these friends for many years, but at 7, the maturity and development of these children allowed them to recognize this commonality. It is such a beautiful thing.
The second thing is that my husband is 7 months sober during this trip. And although he chose not to discuss it, he was feeling a tremendous amount of healing. Every single member of our family, including our 15, 13 and 10-year-old daughters, experienced the blessings, friendships and bonds that only those in the Rb world can understand. This can’t happen online, this can only happen at Camp Sunshine.
Tina and her family in front of the fireplace in the Camp Sunshine dining/activity hall.
Tina Montone is a Catholic, a wife, and a mother of 4 kiddos, and an Rb Cancer mama. Tina feels her biggest blessing from God is her intuition, noticing Max’s tumor at a young age. She feels the mother’s intuition must be recognized and taken into account during all medical discussions and examinations during diagnosis discovery.
Tina was blessed to be a stay at home mom until all her children were in school full time. She now works full time for a specifications consultancy in the AEC industry. Tina & Kevin have been married for 18 years and are proud of the growth they have both experienced on this journey.
Help WE C Hope Send More Families to Rb Week!
WE C Hope is delighted to have sponsored two families to Camp Sunshine Rb Week this year. With your support, we aim to increase the number of families we sponsor to camp next year. Each family sponsorship costs $2,500, including all accommodation in private family suites on the beautiful campus, meals, activities, and transport from/to Portland.
There are several ways you can support our campaign.
Please give generously – thank you so much for your support!
About the Author / Editor
Lori Baños lives in Iowa with her husband, Juan. She has two children and three step-children. Her daughter, Sena, is a 17 year bilateral Rb survivor. On October 24, 2010, Lori created the Facebook group, Rb Moms, for mothers of children with Retinoblastoma. The group currently has nearly 1,400 members.