Please help our family participate in the 4th annual One Retinoblastoma World collaborative meeting, taking place in Washington D.C., October 9th – 11th, 2017. The event invites parents and survivors to join with medical professionals and research scientists to develop the best care for children with eye cancer. This is a rare opportunity as the United States is hosting this year's international meeting.
Retinoblastoma is the most common eye cancer of infancy and early childhood. My daughter, Sena, was born one week before her due date and was a whopping 9 lbs., an apparently healthy baby. But she would cry whenever the sun was shining in the window and this behavior continued for MONTHS. She cried when we went for a walk, went to the pool, drove in the car, opened the windows, etc. I repeatedly called my Obstetrician and Pediatrician for advice. I got the same answer from everyone: “she has been living in a dark womb for 9 months and just hasn’t adjusted yet-give her more time.” I gave it time until I begged her pediatrician to take a closer look at her during a well baby check up. Her pediatrician referred us to an ophthalmologist after noticing a white reflex in her eye (it should be red). Sena was diagnosed with bilateral retinoblastoma (cancer in both eyes) at four-months-old and it had been rapidly growing since birth. Sena began chemotherapy four days after diagnosis, on November 6, 2001 which was also her brother’s second birthday. Every three weeks, we took her to the hospital at 5:45 a.m. and she would be put under general anesthesia. She would receive laser treatments to her eyes and then after she awoke she would stay over night and receive chemotherapy. Additionally, she had many hospital stays due to fevers, illness, etc. in between each treatment. She also had two blood transfusions due to low hemoglobin. I had to give her shots at home to boost her immune system. Chemotherapy took a toll on her immune system and after four treatments she had to take a six week break because her white blood cell counts were too low. Her counts came up slightly and chemotherapy was started again but this time it had no effect on the tumors in her right eye and her ophthalmologist recommended enucleation (removal of the eye). The tumor was also covering the optic nerve which meant it could easily find its way to the brain, assuring a very short life expectancy. Sena’s right eye was removed March 4, 2002 and she completed chemotherapy one week later. We celebrated that she was a cancer survivor and made vacation plans to celebrate on her first birthday. But, at a routine eye exam two and a half months later, 18 new tumors were found in the left eye. They were in the vitreous (fluid of the eye) and could not be treated with chemotherapy and laser. Radiation was our only option. Sena began radiation on May 31, 2002. Every morning, Monday – Friday, we arrived at the hospital at 8:00 a.m. for general anesthesia and radiation. Radiation went by without incident. She completed radiation on July 5, 2002. Approximately one year later, Sena developed radiation induced cataracts. In 2005, Sena’s cataracts required surgery. This improved her vision, as a new artificial lens with correction replaced the old one. She wears glasses with bifocal lenses and correction and continues to have eye exams and oncology check ups every 12 months. Retinoblastoma is a genetic cancer which predisposes her to second cancers. The radiation treatment she received increases this risk.
Media coverage and links to our story:
Retinoblastoma usually develops in the first two years of life. Though highly curable, 90% of children who survive have moderate to complete irreversible sight loss, and an estimated 7,000 children die each year. Achievable improvements in life and vision survival remain unrealized, due to unequal access to quality cancer care and professional development opportunities.
One Retinoblastoma World is a working meeting, promoting national and global collaboration to advance early diagnosis, evidence based treatment and intelligent, compassionate life-long care. The multidisciplinary delegation includes parents, adult survivors, ophthalmologists, oncologists, child life specialists, nurses and researchers with a broad interest in both pediatric and adult eye and cancer care. This year’s program is inspired by questions commonly asked by parents and survivors:
We are hoping to attend One Retinoblastoma World as a family. We will benefit greatly from the education this event offers, learning from some of the world’s leading experts in the field and from other parents and survivors. Our children will also gain new skills, friends and support. As a parent, I feel I have a lot to offer. I can be part of the vital collective voice for families as the community works together to find the best ways forward in family focused care.
My fundraising goal of $1530.00 will cover my family’s travel, hotel and registration expenses for One Retinoblastoma World.
This breaks down as:
Travel costs to/from D.C. (We will drive our personal vehicle): $278 one way x 2 = $556
Hotel, $231 per night x 4 nights = $924
Registration = $50/family includes breakfast & lunch and attendance all three days
Any additional funds raised will be used to give our children a sight seeing tour of Washington DC since this is their first visit to the area.
Every parent knows that we are critical members of the child’s circle of care. Childhood cancer has lifelong impacts for survivors. Our involvement in One Retinoblastoma World is vital to improve childhood eye cancer care, cure and quality of life, throughout life. Our experience inspires us to work with other parents, survivors and professionals advocating for improved early detection, clinical care, family support and ongoing survivorship care. Your support will enable me to be the voice I know I can be, and give my family access to innovative education and support we cannot find anywhere else. I will be so deeply grateful to you for your support in sending us to Washington DC.Thank you very much!With gratitude, Lori & Juan