While Nellie Chan’s daughter, Ruby, was being treated for Retinoblastoma at Children’s Hospital Los Angeles (CHLA), a doctor’s casual mention of Know the Glow® prompted her to get involved and help other parents and families find Retinoblastoma treatment.
“I was getting anxious on behalf of the parents dealing with Retinoblastoma for the first time, because it was so difficult to find information, and there is a time sensitivity with cancer,” Nellie said.
Using her knowledge and experience, Nellie researched and created a complete list of all the hospitals and treatments centers in the United States, along with helpful, scientific content and contact information.
“Many hospitals carry general content but very few have helpful information,” she said.
So, she turned her research into a tool for other parents who share similar experiences.
Nellie Chan shares her motivation to help other parents:
Know the Glow: Would you share your work on the Know the Glow campaign?
Nellie: I found the primary children’s hospital in each state. There often wasn’t much on the website, so I called the pediatric ophthalmology departments to ask if they diagnosed Retinoblastoma. The hospital staff often didn’t know.
Then I moved on to the international hospitals, which was difficult because of translations.
Know the Glow: What kept you motivated?
Nellie: I really wanted a good list of resources for parents. I felt a responsibility to get this information, so they can contact Know the Glow and get real and accurate information.
When Ruby was being diagnosed, there were three misdiagnoses before we got an official answer. I don’t want others to experience that. Treatment has to happen very fast, and you have to make big life changes very quickly.
Know the Glow: Did you personally have troubles finding information before and after Ruby was diagnosed?
Nellie: Yes. I’m very proactive and just kept pushing. I had found one outdated list of hospitals and treatment centers and one paid list of hospitals that didn’t even treat Retinoblastoma.
Know the Glow: How do you think finding a nearby hospital impacted you and your family?
Nellie: I’m thankful we live in California, because CHLA is so close. I met a lot of families in the CHLA waiting room who had to fly in for treatment. It’s not uncommon for families to cross state lines to receive treatment.
I feel we are very fortunate that Ruby’s disease was caught so early.
Know the Glow: How is Ruby doing now?
Nellie: She is feisty and quirky and quite funny.
It’s certainly rare that Ruby’s Retinoblastoma was caught so early. It’s been nearly two years since the diagnosis and two phases of treatment. A couple of months ago, we were in a great place, because they said her tumors were all stable. We were able to go five or six weeks between visits.
Then two weeks ago, they found what they believe may be a new tumor. We felt very discouraged, but we’ve learned to move and move forward. So while this is a bummer, she is so young, and her eyes are still developing, so the doctors weren’t concerned. The tumor has been lasered, and it’s stable. Ruby is still chemo free. It’s still good news.
Know the Glow: What wisdom would you like to pass on to other families dealing with Retinoblastoma?
Nellie: The thing that has been key to our survival is an understanding that this—the ups and downs of retinoblastoma treatment—is a phase. We have this mindset. This period of time will only last for a while, and then life will be a little better, and it will look different.
Kathy, the head nurse with the Retinoblastoma department at CHLA, told us, “One day, you aren’t going to be putting Ruby under anesthesia. We won’t be putting her in the OR. Instead you’ll be coming in for normal visits and going to lunch afterwards. One day Ruby is going to pass me in the hallway, and she isn’t even going to remember who I am.”
It was so great to have someone who knew to tell us that, to help me know this won’t be the perpetual state of our family. But it’s a perpetual life rollercoaster, because this is a lifelong condition. We need to be careful with Ruby forever.