It’s true, your mother knows you best. Take Ellie’s mom, Jenna, for example. At 16 months old, Ellie didn’t know there was something wrong with her eye, but mom knew. Jenna noticed a foggy look in Ellie’s eye, but no one else could see it, including Lance, Ellie’s dad.
Lucky for Ellie, her mom was around to notice. You see, four months earlier, just after Ellie’s first birthday, Jenna had collapsed and ended up in the ER with a viral infection that had attacked her heart. Jenna spent a month in the hospital, mostly in the ICU, while she recovered. She is still on medication but her heart is 90% normal.
Considering all the young family had recently been through, Lance didn’t question his wife. After a visit to the eye doctor revealed nothing, Lance began researching foggy eyes. Then, a short time later, they had a photo taken at a wedding. Only one of Ellie’s eyes had a red reflection.
“Because of my research, I knew this couldn’t be good,” Lance said. Their eye doctor sent them to a specialist, who determined there was a tumor, and it was most likely retinoblastoma. Two days later, they drove from Nebraska to Iowa City for more testing. Doctors there confirmed Ellie had bilateral retinoblastoma.
“Ellie’s whole right eye was almost a tumor, she could probably only see light. They said she was still tracking with that eye, which means it grew really fast.” Lance explained. The next morning, Ellie underwent surgery to remove her right eye. She now has a prosthetic eye.
“It all happened so fast. Doctors said we could have taken her to New York or Chicago for another opinion, but that could take two weeks, and they didn’t think we should wait. There were other treatments we could try, but if they didn’t work and the tumor spread out of her eye, then it would be really bad,” said Lance.
Once the surgery was completed, the focus turned to saving Ellie’s other eye. Which means monthly chemo treatments, laser treatments, and occasional MRIs. The 786-mile round trips, complete with overnight hotel stays, are just not in the already-struggling family’s budget.
Having already used up his vacation time while Jenna was in the hospital, Lance now has to take unpaid time off work to drive Ellie back and forth to treatment. Jenna was also off work for about two months.
“Our jobs have been lenient with us taking time off, but missing hours doesn’t help us financially. Thanks to Compass to Care, we haven’t had to worry about gas, parking fees, and hotel stays,” Lance said.
“How do you put into words how much of a difference your support has made? We feel blessed. We only have to travel 6 hours to treatment – others have to go so much further, and maybe fly across the country.”
Tough Girl
Like any normal kid, Ellie really didn’t like getting her eyes dilated, or having anyone hold her down while they did it. She didn’t like the patch on her eye after surgery. Just seeing nurses and doctors used to make her cry, but not now.
“Ellie knows what’s supposed to happen during her visits and she keeps them in line. She used to hold her arm and her port and say ‘ow’, even though it was all numbed. Now, she pulls her sleeve up and acts all tough,” Lance laughed.