Our Rb Stories

Amanda from New York:  My name is Amanda and my daughter, Emma, was diagnosed with bilateral retinoblastoma at four and half years old. When she was diagnosed doctors were amazed at her age and that we hadn’t caught her cancer sooner, or that it hadn’t spread. She had no symptoms and her Rb was found by a fluke.
Emma attended Head Start through the Universal Pre-K program in our town when she was four. The Head Start program is amazing. They offered not only a social setting for children to interact, but education, dental screenings, and visual screenings. While Emma had been to the doctor and dentist before, having her seen by an ophthalmologist had never crossed my mind. She could see. Why would we need to have her eyes checked?
Well at her visual screening – completed by the Lion’s Club – the report came back undetermined. They suggested she be rescreened at their next visit. Unfortunately, the screener was in his 90s and passed away prior to being able to return to rescreen. So I set Emma up witha pediatric ophthalmologist thinking she may need a slight prescription. As it turns out, Emma has PERFECT vision in both eyes. We went to the ophthalmologist and had a regular dilated exam (Emma has always been an excellent patient and let them do what they needed). I think the poor doctor was in shock. He kept asking if Emma had ever been seen for her eyes before and how old she was. He really kept asking her age, to the point that I started to think I was crazy and was counting years in my head.
And then he looked at me and said he didn’t know how to tell me, but that she had tumors. I didn’t know what that meant at first. Well I did, but I didn’t want to. So we took her to Dr. Shield’s in Philadelphia for treatment. Seventeen months after her initial diagnosis – one month before her sixth birthday – Emma had her right eye enucleated. She’s a strong girl and full of dreams and hope.
Emma’s story is important, because so often ophthalmologists stop looking for Rb after infancy. A four year old can have this cancer and have no symptoms. It is so important for every child to be seen early in life for all eye diseases and disorders. Emma has a germline mutation of her thirteenth chromosome, on the Rb gene, exon 20. She has a chance of passing this along to her future children and of developing secondary cancers. But we always say, no worries.

Jennifer from Ohio:  In May of 2008 I noticed my son’s eye had a “disc” in it with the reflection of the sun. I thought I was just seeing things, but thought I’d go to see the Dr. to ease my mind. The doctor did see what I saw and advised me to call upon a pediatric ophthalmologist. Upon calling the pediatric ophthalmologist and telling him my son had been diagnosed with “white leukocoria” he saw him immediately. Within 20 minutes, I was told my son had cancer. Course, I had done my own research on the internet ~ and feared the worse. So, I knew the term of retinoblastoma when I heard it said out loud for the first time. We were sent to the hospital at once ~ things were going to move very very fast.
My son, Chase, was diagnosed @ 10 months of age and had his right eye
removed 5 days later on June 6th, 2008. Although though the tumor was
very large, it had not spread and he has not had to undergo any
further treatment.
You must trust your instincts and realize you are your child’s only
advocate. If I had listened to my husband who was very angry with me
to begin with even noticing something may have been wrong ~ my son
might not be here today.

Greg from Missouri:

By Kalen Ponche        Saturday, August 29, 2009 3:14 AM CDT
Twenty-month-old Daniel Waters’ blue eyes shine as he points to his
Curious George stuffed monkey in the living room of his home in St.
Charles.  Daniel watched Curious George tapes while he received chemotherapy to  treat a rare childhood eye cancer during the past year.
Today he’s in remission and still can see, in part because of a routine
eye screening done by the Parents as Teachers program, a state-funded
organization that provides information and support to parents with
children under age 5 free of charge.
“Because of Parents as Teachers, our son was able to keep his eye and
keep his sight,” said Daniel’s father, Greg.
Greg and Amy were married for 16 years before they had Daniel. Amy
teaches second grade at Lincoln Elementary School. Greg is a district
manager for Home Depot. They hadn’t planned on having kids and weren’t
sure they could, Greg said.
“We were 37,” he said. “If we were going to do this, we said let’s try
now.”
Amy signed up with the Parents as Teachers program even before Daniel
was born. Stacy Pearson, Daniel’s parent educator, visited in November
2008, about a month before his first birthday. She conducted a routine
health and vision screening. Pearson shone a pen light into each of Daniel’s bright blue eyes. She checked to see if he was blinking normally and if his eyes followed as she moved the pen light from side to side. She noticed the light wasn’t reflecting off both eyes symmetrically, a possible sign of a lazy eye. Amy and Greg couldn’t see what Pearson saw, but took seriously Pearson’s recommendation to see a pediatric ophthalmologist. The ophthalmologist looked at Daniel and told the Waters he likely had
retinoblastoma, a childhood cancer that occurs in retinal cells in the eyes.
Amy and Greg couldn’t process what the doctor was saying.
“It was like ‘blah blah blah tumor, blah blah blah cancer, blah blah
blah fatal,” Greg said.
As they took Daniel to a specialist, some hope returned. They had found
the cancer early and thought they would be able to save his eye. He
underwent seven rounds of chemotherapy in five months and was largely
isolated in his house to protect him from germs.
“They start to give you back that hope, but the fear is that what if it
comes back?” Greg said. Retinoblastoma is universally fatal if it is undetected and untreated, said Nancy Mansfield, counselor and patient advocate for the Retinoblastoma program at Children’s Hospital in Los Angeles. Early detection is key to treating this cancer and saving a child’s eyesight, Mansfield said. Often, the cancer is detected by parents who notice a white glow in their child’s pupils. It can be more noticeable in photographs. After Daniel was diagnosed, Amy and Greg found photos in which one of Daniel’s eyes appeared to be white. But they hadn’t noticed anything was wrong with him before Pearson did the vision screening. “It’s like the planets were all aligned properly,” said Mansfield, who was not involved in Daniel’s treatment. “He was diagnosed while his tumor was treatable, he got good care, and his vision was saved.” Daniel finished his chemotherapy treatments in May. This summer the family visited Grant’s Farm and the St. Louis Zoo, ate out at restaurants, played at the park and went swimming. Daniel’s wispy blond hair grew out and he regained his energy. Amy’s one goal for the summer was to write a letter to the superintendent of the Francis Howell School District thanking Pearson for helping him get diagnosed quickly. “We felt like somebody should know, because she did her job and our son got to keep his eyesight,” Greg said. The Francis Howell Board of Education plans to recognize Pearson for her efforts.  from http://suburbanjournals.stltoday.com/articles/2009/08/31/stcharles/news/0830stc-cancer0.txt