“We Could Not Have Survived This Journey Without the NCCS”

Janet and Robert found out their daughter, Elise, had bilateral retinoblastoma when she was 5 months old. Not only were they still paying for the cost of her birth, but Robert had started a new job on the exact same day as the diagnosis.

“We cut back on spending and I would make payments to multiple hospitals at a time to keep current. I was so afraid that if we were to default, Elise wouldn’t receive the treatment she needed. My parents helped out as much as they could with groceries and diapers. I had to continue working which was stressful, but I had no other choice. Had I stopped working or was let go, we would have lost everything,” Janet recalled.

When Janet expressed her deep concern over their finances to their hospital social worker, she was referred to The National Children’s Cancer Society (NCCS). Although she didn’t know what to expect, Janet was hoping for help with their travel expenses to get Elise to cancer treatment.

After a few rounds of chemotherapy, laser and cryotherapy treatments, there was still no progress. Meanwhile, Elise’s eyes were swollen and she was in incredible pain. Thankfully, they were then directed to a treatment center in New York that specialized in Elise’s particular cancer.

Doctors in New York determined Elise was a good candidate for inter-arterial chemotherapy — a treatment protocol only offered at a few facilities. The NCCS helped Elise and her family with 40 trips to New York for treatment and follow-up care.

Today, Elise is 7 years old and loves swimming, dancing and traveling. She’s got a funny side and is always trying to make others laugh, but she also has an old soul.

Janet says “Elise is very in tune with her feelings and compassionate to others. She’s easy going but always concerned she is doing the right thing to be a good human.”

Elise’s cancer meant by the age of 1 she had gone through a multitude of painful surgeries, eye exams, chemotherapy appointments, blood draws and infusions. Although the risky treatment worked for her, part of the stress never goes away for her parents.

“I wish people knew having a child with cancer means the possibility of having active cancer is always a fear and a real possibility. Just because we are past active treatment doesn’t mean everything is great. The dark cancer ‘cloud’ is always looming. Every checkup feels like October 15, 2012, diagnosis day, every time,” Janet said.

Robert and Janet are incredibly thankful for the NCCS and the people who support families like theirs during some very vulnerable times.

“NCCS helped save our daughter’s life, period. They made it possible for Elise to get to the best care available. NCCS means the world to us. I constantly tell people NCCS is the most legit nonprofit organization where donations actually go to their intended purpose. We could not have survived this journey without the NCCS,” Janet concludes.