Caroline Johnson clung to her Curious George doll as she eyed the strangers in her home Tuesday. The past month has taught the 14-month-old to always be wary of others and expect the unexpected.
Her parents, A.J. and Leighanne, certainly also have learned a bit about the unexpected. In less than 24 hours, they went from thinking their daughter might be having bowel issues to a pre-diagnosis of liver cancer.
"Within a few hours, we went from thinking we were going to go home with a stool softener and then we were in the cancer ward," Leighanne said.
NOT JUST GAS
Since Caroline was born, she's had some issues with regular bowel movements. She also always had a large belly, something people commented on, and was largely dismissed as the child being a little chubby.
January started rough, with Caroline coming down sick repeatedly with everything from an ear infection to a respiratory infection. On Jan. 15, Leighanne was changing Caroline's diaper when she discovered a hard lump on her belly.
"It concerned us, and she's always had bowel issues since she was born," Leighanne said.
The next day, they took Caroline to the doctor, who did an X-ray that showed she had a slightly enlarged liver. They weren't really concerned because the diagnosis was gas buildup. The lump still was there the next morning.
"From Friday to Sunday, there should have been a change (if it was just gas)," Leighanne said. "So we thought she had impacted stool."
Not satisfied with the answer she had gotten, Leighanne and A.J. decided to take their daughter to the urgent care unit at Nationwide Children's Hospital in Columbus. Before leaving, Leighanne left a key hidden at the house even though she never had done so before.
"I just felt like something wasn't right," she said.
Caroline went through another round of X-rays at Children's.
"They saw the same thing, but they were concerned by the size of the liver and they did an ultrasound," Leighanne said.
"After three hours, they started doing more tests, kind of rambling, without telling us anything," A.J. added.
Before long, Caroline was admitted to the oncology ward and, after a biopsy Jan. 22, she officially was diagnosed with hepatoblastoma.
"We wanted to know why ... The doctor said, 'Bad luck.'" Leighanne said, adding there is little known about the cause of hepatoblastoma. It's possible Caroline has had the tumor on her liver since birth.
LIVING AMONG STRANGERS
Caroline hardly has been home since her diagnosis. Leighanne hopes her age means she won't remember the trauma of having a port inserted for chemotherapy treatments or the numerous X-rays and tests. However, it's also hard to know how to respond to the side effects of chemotherapy -- she just completed her second round.
"It's so hard to know how she feels," Leighanne said.
One of the chemotherapy drugs she is on is part of a trial believed to decrease the chances of recurrence. The drug causes sores to develop throughout Caroline's body while other drugs can have an impact on her heart and kidneys.
The experience also has changed how Caroline interacts with others. People, especially new ones, make her anxious, and having her clothes changed can trigger a fit. A stuffed Curious George doll often helps calm her.
"George goes through everything," Leighanne said.
Although home right now, things aren't normal. Caroline stopped eating after the biopsy and needs to be hooked to a feeding tube each night and she is taking numerous medications -- 14 including her chemotherapy drugs.
"She's weak. She's regressed. She started walking at 11 months, and she won't walk without assistance now," Leighanne said. "You want home to be as normal as possible, but it's not because she's still hooked up to stuff."
The experience also has impacted her demeanor, making any smile or playful moment a special time.
"She was a go-getter (before), all over the place. You couldn't keep up with her," Leighanne said. "Now, you have to beg her to play. That's really hard for us."
SUPPORT OF A COMMUNITY
Although there's no good time for cancer, circumstances have the Johnsons in a position where they can stay with their daughter around the clock. Leighanne had been doing her internship for her master's degree, which she has put on hold, while A.J. has been laid off from his job at a Cincinnati construction company.
"It's been stressful. We're really blessed by the amount of family and friends we have," Leighanne said.
Friends have sold T-shirts and bracelets to raise money to help while others have watched after their dogs, cleaned their house and brought them food every night. Churches throughout the county have Leighanne on their prayer lists.
"You don't get this kind of support in a big community," Leighanne said, adding she is glad they had moved back to Chillicothe from Massachusetts. "(The support) is just amazing. I think that has helped us through."
Family members have planned a March 13 chicken noodle dinner to raise funds to help Caroline and her parents with expenses.
Right now, the Johnsons take it day-by-day and are optimistic. So far, Caroline has responded well to chemotherapy. If the tumor has shrunk enough after the most recent treatment, doctors might be able to remove the cancerous tumor surgically. If not, there will be two more rounds and a check and another two rounds. If the tumor doesn't shrink enough for removal, Caroline will be placed on the transplant list. If the tumor can be removed, Leighanne said there is a 66 percent survival rate.
"We're very positive and hopeful," she said. "It's kind of like a waiting game now."
She recommends parents not wait if something seems wrong or if they aren't satisfied with a diagnosis.
"If you feel like something is wrong and you're not getting an answer, don't wait ... Can you be over worried? Why does it hurt to ask for a second opinion?" she said, speaking to the power of parental intuition.
