By Hope N. Griffin
At 6 months old our precious daughter was diagnosed with retinoblastoma (RB), a cancer of the retina, the part of the eye that senses light and sends images through the optic nerve to the brain.
Going back in pictures we know she had RB as early as 3 months old. We know because of the white glow in her eye. Where a healthy eye would result in red eye from the flash, the lack of blood flow results in a white glow. Her cancer could have started prior, but this is the first indication we were able to pinpoint. RB is unlike other childhood cancers as it was the first cancer gene to be identified and cloned. When our Katie’s cancer was detected, in 2007, RB made up only 3% of all childhood cancers.
We first noticed something was wrong when Katie began to crawl. She would run into chair legs and just keep going, running into them again and again on her left side. She hated peek a boo and would only nurse on one side during the day and the other at night. A trip to the eye doctor confirmed that she was blind in her left eye due to a detached retina. How her retina had detached was however a mystery and we were sent to a specialist.
Right away the specialist had a good idea what the problem was, though he was hesitant to diagnose her. He had only just attended a seminar one month prior where he had learned in detail about this rare childhood cancer of the eye. He had never actually had a patient or seen the disease first handed. He sent us directly to St. Jude Children’s Research Hospital where his suspicion was confirmed, and our family entered the world of cancer research and survival.
It’s easy in a story like Katie’s to see the benefit of research. Today 99% of children in the western world survive this disease. In 1869 only 5% of those diagnosed with RB survived.
To learn more on the history of Retinoblastoma read: Retinoblastoma in the 20th Century: Past Success and Future Challenges The Weisenfeld Lecture
Our daughter is with us today because of the parents and the children who went before her. The work of researchers for 150 years increased the survival rate from 5% to 99% and our daughter’s life was saved.
The remarkable advances in understanding RB are due to the willingness of generations of people who contributed to the research of this disease.
Now we are part of the survival clinic at St. Jude where visits contribute to ongoing research for future generations. My daughter lost her sight in one eye due to this disease. Perhaps one day the research she is helping the hospital partake in will not only save lives but also the vision of other young RB survivors.
Retinoblastoma was the first cancer to have its genome fully mapped, which allowed researchers to better understand other types of cancers.
It’s easy to see the benefits of research in childhood cancer, but research is necessary to understand and combat all medical ailments. Without research we wouldn’t have the vaccines we have today to combat mumps, rubella, and many others. Alzheimers and Parkinsons research have made significant gains in the last decade. While a cure is still being sought for both, the quality of life is being extended. The same can be said of chronic pain, arthritis, the common cold, and a host of other ailments. The only way to improve our children’s lives and the lives of their children is to do the hard work today.
**For more on Hope, her blog is at http://www.hopengriffin.com/**