The Barkema family's cancer-induced hibernation ends this spring, as the family's youngest member, Lola, has completed her chemotherapy.
Lola Bella Barkema completed chemo, which put her cancer into remission, just in time for her 1st birthday on April 20.
Chemotherapy patients have compromised immune systems, making family outings with Lola a gamble the family rarely took.
"The worst part has been the isolation," Kelli Barkema said of the family's experience.
"It's been such a long, cold winter."
Innocent Lola, barely old enough to talk, but old enough to get bored, seemed to complain.
"Some of her first words were 'I go?' any time we'd go to the door," Ken Barkema said.
Kelli and Ken have attended church separately so that one parent is always home with Lola and 3-year-old sister Bridget. Lola's immune system may not be "normal" for some time, but as it recovers to "good enough," Kelli Barkema said, church will be a new adventure Lola undertakes.
"We haven't been anywhere as a family," Kelli Barkema said.
Lola was diagnosed with retinoblastoma, a rare eye cancer, in November. Her tumor now is a fraction of its original size and continues to flake and break apart. Doctors say what's left is just the tumor's inactive calcified remains.
Where healthy individuals have two rosy-red eye reflections when camera flashes bounce off their retinas, Lola's tumor reflects a white glint. That glint is the light bouncing off her tumor. She began chemo in December and received her last treatment in April.
The Barkemas said it may sound a bit strange that "the worst part" of their daughter's cancer and chemo was the isolation. Wasn't it terrible to watch a baby undergo a difficult treatment like chemo? Wasn't it painful?
Kelli said that wasn't Lola's experience.
"You tell people your kid has cancer and they imagine a sickly, pale child, and that's pretty much the idea we had before we started this," she said. "(Lola) has gone above and beyond that, and you'd never know by looking at her that she's sick. ... She doesn't know anything is wrong. That's been a blessing."
Lola met traditional benchmarks of child development even while quarantined in her home. She started crawling and talking at normal times, Kelli Barkema said.
Lola's grandmother, Lois Garcia, cried quietly for a moment when asked how the last year has impacted her life.
"That she's alive is the most important thing. That she has her eye is a bonus," Garcia said.
The end of the Barkemas' chemo hibernation will also mean more advocacy. Kelli Barkema was marked by her experience with her family pediatrician and Lola's cancer. She was disappointed that at two wellness checks Lola's doctor did not do a simple test to screen for retinoblastoma and seemed to downplay her motherly worry.
That simple check is a quick flash into a child's eyes with any flashlight. If anything besides red shines back, it is likely a sign of deeper trouble.
Kelli said she's begun networking with health and parent groups. One of those groups is InfantSEE, a program that offers free eye exams to babies.
Dr. Michael Judkins, of Promontory Family Vision in Washington Terrace, is a member of the InfantSEE program.
"You just think kids don't need eye exams unless they complain, but really they do," he said. "Of course, retinoblastoma is the worst-case scenario, but there are all kinds of issues that could be there and not detected until very late."
Parents can take their children ages 6 months to 1 year to any participating optometrist for a free assessment.
"It's a no-charge assessment, so I think that speaks to how important it is, because we're actually donating our time," Judkins said. "It's a lot more entailed than just looking at the light in their eyes."
Local participating optometrists can be found at www.infantsee.org .
The Barkemas are still waiting for the day that Lola's mainline -- a tube in her chest used to deliver medications -- is removed. That should happen soon. But Lola has had the line half her life, and the Barkemas say it doesn't bother her anymore.
The cancer chapter in their lives is winding down. Lola's risk of developing a secondary cancer -- an ironic side effect of chemotherapy -- will still be elevated for a number of years. But the Barkemas are able to contemplate even that possibility with a peaceful smile.
"It's like Romans 8:28," Ken Barkema said, citing a Bible passage, which states that in all things God works for the good of those who love him.
"We've seen that come to life."
Beautiful pictures of a beautiful baby. But the "cat eye" appearance of the left eye represents anything but beautiful. Retinoblastoma is but one of many conditions which give this appearance in digital photos. Sometimes it is as simple as the eye misfixating on the camera. But a consistent "cat eye" reflex in a child's photo requires immediate attention: congential cataract, persistent hyperplastic vitreous, Coates Disease, or retinoblastoma may be present. Other signs may be a turning eye, either in or out, intermittent or constant. Read Lola's story below.