TOPSHAM — Trying to start a business five years ago, Sarah Dube thought all the hardships she and her husband, Tom, encountered were preparing them for something big.

Never would they have thought that the looming challenge would be liver cancer — or that it would strike their youngest family member.

The first year it was open, their Lisbon Falls music store suffered a substantial instance of fraud, setting the couple back several thousands of dollars and making it difficult to pay the mortgage on their house in Monmouth. When Sarah was four months pregnant with her now 2-year-old daughter, Emma, the couple and oldest daughter, Eliza, now 6, moved into a condominium in Topsham.

Sarah was working part time at Hancock Lumber in Yarmouth so she could be home to care for the children. The family lives very frugally, Sarah said, but, “we take care of the important things.”

After Eliza turned 5 in June 2010 and Emma was 10 months old, the Dubes went to StoryLand in New Hampshire.

“We decided to save money. We were going to camp out,” Sarah said, sitting at her kitchen table recently while recalling her family’s recent journey through the tumultuous times that come with cancer.

“Life was good,” she said. “We were getting out as a family. We were just really excited about traveling around Maine because there’s so many awesome things here to do.”

That was life before cancer.

“We thought Emma’s tummy was getting a little big and firm,” Sarah said of her then-10-month-old, “but babies tend to have big hard tummies.”

Then one day it struck her that, “really, it’s just getting too big.” She took Emma to see the pediatrician.

“He certainly felt there was something not right,” but wasn’t alarmed, Sarah said. He recommended Emma get an X-ray, which was done a few weeks later.

The Dubes went home after the appointment, and Tom left for the music shop.

“It wasn’t even an hour (later) that our pediatrician called and he just told me it wasn’t good,” Sarah said. “She had a tumor in her belly and it was cancer.”

Staff at the Barbara Bush Children’s Hospital in Portland wanted them at the hospital that night. Emma had to fast so they couldn’t feed her anything, and then she was having blood drawn for labs, “and it’s all moving really quickly,” Sarah remembered. “We knew that (the) Barbara Bush (hospital) existed, but never in my wildest dreams did I think we were going to be there.”

She got to know it well.

“If you’re driving by Maine Medical Center,” and see the windows of the cancer wing in the Barbara Bush Children’s Hospital, “basically those are the windows I stared out for months and months and months, and just felt trapped, and horrible. It gives you a whole new perspective on life, that’s for sure,” Sarah said. “The freedom that we all have that we don’t realize.”

“It’s quick,” Sarah added. “It’s a phone call.”

Emma had a CT scan, a challenge because she didn’t have enough room in her stomach to swallow the red fluid used to light up her veins. The tumor measured 15 centimeters and was the size of a melon.

The Dube family met their oncologist the first night at Barbara Bush, Sarah said. The next day or day after, Emma underwent a four-hour surgery for a biopsy on the tumor and had a central line installed. Within a day or two, they had the diagnosis: Hepatoblastoma or liver cancer.

Next, the plan was for Emma to undergo six rounds of chemotherapy. Because white and red blood cells get hit as hard as cancer cells, Emma had a handful of blood transfusions during the chemotherapy.

After the fourth round of chemo, Emma went to the Children’s Hospital Boston for a CT scan to see if the tumor could be removed from her liver because even if half her liver had to be cut off, a human liver regenerates.

On the day of the CT scan, the Dubes left home at 5 a.m. and headed to Boston, where they met with everyone on Emma’s team. She had an ultrasound and CT scan and other tests.

The CT scan results led their surgeon to tell them there was “absolutely no way that they’re going to be removing that tumor without taking the liver out with it,” Sarah said. “Her only chance of survival was a liver transplant. It was harsh.”

Homebound, they hadn’t even made it out of the city before the surgeon called to inform them Emma was on the transplant list through the United Network for Organ Sharing (UNOS) and he would make a request to get her even higher on the list.

The Dubes were told to expect a call within two weeks. Two days later, they received a call from Children’s Hospital Boston informing them of a potential liver donor.

A neighbor was already planning to get Eliza on the school bus so, “We had our bags packed. We just had to jump in the car,” Sarah said.

They arrived in Boston at 11 a.m. Emma couldn’t eat anything all day. The surgeon told them at 2 p.m. that he was going to get the liver. At 7:30 p.m., the nurse came to get Emma because the doctor determined the donated liver would be a good match.

“I could never take (Emma) into where she was going to get her anesthesia anyway,” Sarah said. “Tom always did that. So Tom put on the gown and then I kissed her.”

The Dubes were told to expect the surgery to last between 12 and 14 hours. Emma went into surgery at 8 p.m., and her parents received hourly progress reports. The liver arrived at midnight.

“We made it through that night and about 7 o’clock in the morning, Dr. (Heung Bae) Kim came out and told us that it went beautifully, and we got to see her in the ICU. … It was a sight,” Sarah said. “She was connected to a lot, but it was always really hard after her surgeries to go in and see her waking up.”

It would take Emma about three days to wake up following the transplant surgery.

The medical staff prepared the Dubes for the worst should something go wrong because liver transplants are one of the most complex transplants. Sarah keeps an eye out for signs of liver failure, but so far, Emma, who received the transplant just after her first birthday, is doing “awesome.”

Her immune system will always be suppressed as she takes anti-rejection medicine to keep her body from recognizing the liver as a foreign object and attacking it — which could happen even 20 years from now.

After the surgery and her recovery, Emma underwent the last two cycles of chemotherapy, and her oncologist said her chances of her getting cancer again, “at this point (are) the same as yours or mine.”

“One in three will experience cancer in their lifetime, which is wild,” Sarah said. But when Emma got cancer, “I knew cancer had its work cut out for this one.”

She wrote a letter, signed only “toddler and family,” that will go to UNOS to give to the family of the person from whom Emma received her transplanted liver. Emma has one half and someone else got the other half of the liver, which belonged to a young adult.

It was a very hard letter to even think about writing, Sarah said. “I think they would want to know it was a young baby that was just starting out in life,” she said.

Adjusting

On a recent visit, Emma, up from a nap, played with toys and occasionally would offer one to a reporter as her mother told of Emma’s battle and the impact on the entire family.

“We all changed our lifestyles for Emma to get her better; to do what we needed to do,” Sarah said. “She’s been the top priority, and it’s been hard for Eliza. To have a younger sibling to begin with is challenging, and then to have one with cancer,” exacerbates the issue, Sarah said. “She still struggles with it. We all had our warrior gear on the whole time,” and when they tried to return to their normal life, “then we all fell apart…”

Friends, family and the community pulled together to take care of the Dubes during this difficult time, holding local fundraisers, so they didn’t have to burden the many services offered by the American Cancer Society. Sarah is walking this year in the organization’s Relay For Life of Brunswick in May.

“What people need to remember is when you get sick or someone you know gets sick, you then become part of programs like this,” Sarah said.

The money raised through Relay For Life is “so huge,” Sarah said, as it also funds cutting edge research. “Obviously we’ve come leaps and bounds with cancer.”

“It was so hard, I don’t even know how we did it now, but when it’s your baby, you do,” Sarah said. “It’s not a broken bone and a cast comes off and you get to go back to your life. It’s something that you’re forever, ever living.”

dmoore@timesrecord.com