Community helps raise money for MHS grad's transplant

By COURTNEY LAMDIN | Staff Writer
courtney@miltonindependent.com

Just this summer, Lucas LaFrance was hiking and fishing and doing anything else an able-bodied 21-year-old could imagine. 

But today, LaFrance is confined to the couch. He has to keep his legs elevated to ease pressure from the 70 pounds of fluid he’s retaining. Normally small-framed, LaFrance is bloated from the stomach down. Three doctors have forbid him to work, and it’s all he can do to walk some days.

“It doesn’t feel good at all,” LaFrance said, two days after he had four liters of fluid removed. It’s all come back. 

“When I wake up in the morning, I feel like a train hit me and dragged me,” he said.

LaFrance suffers from Budd-Chiari syndrome, a rare disorder that prevents bloodflow from the liver to the heart. Common symptoms are fluid retention in the abdomen and varices, or swollen blood vessels in the esophagus and stomach. Doctors have to check these every eight weeks and band them off before they rupture, which could cause life-threatening internal bleeding.

LaFrance’s complications date back to age 10, when a rare form of cat-scratch disease caused a non-cancerous tumor. Doctors removed half of LaFrance’s liver, and he was fine, aside from missing a few months of fifth grade, until three weeks before graduation from Milton High School.

LaFrance went to the doctor for an earache, and his eyes were jaundiced, a clear sign of liver trouble, which his blood tests confirmed. His liver grew back wrong, and a transplant is his only chance for survival.

Unfortunately, one has to be even sicker than LaFrance to get a new liver. A patient’s need is measured by a MELD score, or Model for End Stage Liver Disease, a statistic derived from blood tests. The score ranges from six to 40, with the higher number meaning the patient is worse off, according to the Lahey Clinic in Burlington, Mass., the closest transplant center to Vermont.

LaFrance’s last MELD score was 21, taken October 19, the day after his 22nd birthday. He was added to the transplant list the same day. LaFrance travels the 200-plus miles to the Lahey Clinic every three months for testing.

A year ago, LaFrance’s doctor asked to put him on the list, but LaFrance refused. He said he wasn’t sick enough.

Since then, “It’s taken a turn for the worse and rather quickly,” said Joslin Smith, LaFrance’s older sister. “It’s really scary. We’re just going day from day and hoping that each day, something good will happen.”

LaFrance’s condition has his family and girlfriend of three years, Carly Buswell, concerned: The transplant, whenever it arrives, comes with major expenses.

Five years ago, LaFrance’s father, Lloyd LaFrance, underwent quadruple bypass surgery, putting him out of his vinyl siding and carpentry business for a year. Then the economy took a turn. 

The combination of factors leaves the LaFrances in a rough spot.

“Just trying to get back on our feet financially has been hard,” said his mother, Jamie LaFrance.

Insurance will cover most of LaFrance’s transplant, and the Lahey Clinic will help, but LaFrance foresees a big tab for lodging: He’ll be in the hospital for two weeks, barring any complications, just for the surgery. Add two more weeks for additional tests and recovery at $85 a night for his parents’ hotel room, plus food, and the bill adds up quickly.

“To ask for help, for my husband, it’s kind of like a pride thing,” Jamie LaFrance said. “I’m always the one helping people. For me to ask for help was hard to do.”

But now that they have, the family is shocked at how quickly the Milton community has responded.

Buswell, who owns Cosmo’s Cuts pet grooming in Milton, started a door-to-door fundraising campaign last Monday, visiting 60 businesses in town and asking them to display a flyer that tells of LaFrance’s illness. Only one declined due to corporate rules.

“Even businesses that weren’t allowed to still did,” Buswell said, smiling.
After less than a week, the Milton community has banded together to help LaFrance afford his surgery. More than $350 was pooled in 10 collection jars Buswell distributed around town. One Cosmo’s customer gave Buswell a $100 bill for the cause.

Smith, LaFrance’s sister, waitresses at the Apollo Diner. She placed a collection jar there and in other locations, including some in Colchester and St. Albans. Every day, she pulls up to $40 out of each one.

Even more customers, townspeople and total strangers have donated gift baskets, paintings, car services, scarves and more for upcoming raffles and silent auctions to benefit LaFrance, who was surprised by the outpouring.

“I figured I would get some support, but just not the generosity of it, how fast everybody gave,” he said.

Buswell specifically thanked Milton Auto, Milton Dental, Rowley Fuels and Bev’s Florist for donations – more are being confirmed this week.

To Buswell, the most surprising donation came from an anonymous woman at a craft store, where Buswell purchased the collection jars and other supplies. The woman overheard Buswell asking the clerk to hang up a flyer and gave Buswell her 30 percent off coupon. Outside the store, the same woman handed Buswell a business card, said she’d make two quilts for a raffle and walked away.

“It made me cry because of how quickly she was to give to a complete stranger,” Buswell said. “When something happens, people are always there for each other.”

Getting a transplant
As of press time, 16,204 people were waiting for a liver, according to the Organ Procurement and Transplantation Network (OPTN), which maintains the national waiting list.

To date, 45 percent of liver transplants are for Americans age 50 to 64, according to the network. Only 7,873 liver transplants were for people age 18 to 34, LaFrance’s category.

Most liver transplant recipients get their new organ from deceased donors. If LaFrance gets that call, he’ll have a five-hour window to get to the hospital. 

LaFrance hopes instead to get his liver from a family member. Buswell, Smith, two of LaFrance’s cousins and two family friends have all offered to get tested for a match. LaFrance has blood type O.

Smith knows her blood type will match, but doctors have to take a bone marrow sample to do more testing. She scheduled her appointment on Wednesday.

Smith is the only immediate family member that can potentially donate: Her mom has had blood clots, her father had the heart surgery and her sister is overweight.

Jamie LaFrance is happy her daughter offered to donate but is nervous to have two children in surgery. Smith said her brother is worried she won’t survive the surgery and he will.

“I said, ‘You just go from there,’” Smith said. “I just feel like the list is going to fail him because it’s such a long list.”

The liver is the body’s only organ that can regenerate. The donor will be hospitalized for three weeks, and LaFrance will use some of his fundraising to cover the donor’s medical bills, he said. 

If the donor is Smith, she could use the help: Her husband just got laid off, and she works six-day weeks to support him and her two young girls.

“If I’m a match, we’ll have to start fundraising double time, because how do you survive?” Smith asked. “How do you get through?”

No one knows when LaFrance will get a liver, but that makes fundraising even more important, Buswell said.

“We need to start preparing for it, because it could be any time,” she said.

Optimistic outlook
A year ago, Buswell said, LaFrance wouldn’t have talked about his disease. He hadn’t dealt with his mortality yet. But today, LaFrance understands his plight.

“I don’t think I deserve life any more than anybody else,” LaFrance said. “If somebody else is sick in bed, and they need [a liver], that’s the way it works.”

LaFrance said talking with friends and family helped him process his diagnosis. Visiting the Lahey Clinic, where the walls and coffee tables are covered with success letters from transplant patients, made him more optimistic.

LaFrance and his family are thankful for the community’s support. The LaFrances would find a way to afford it if a liver became available, but the donations will help immensely, he said.

“That’s what’s nice about living in a small community,” LaFrance said. “I know everybody pretty much, and everybody else knows everybody.”

Smith said the donations have helped raised their spirits, but the LaFrances realize getting a transplant is just the first step. After surgery, there’s recovery, and LaFrance will have to take immunosuppressant and anti-rejection drugs for the rest of his life.

“Even though we seem so excited, and it seems like so much has happened, there’s still so much ahead of us,” Smith said. “We’ve gotta keep the game face on and keep going.”

To help Lucas LaFrance’s fundraising efforts, send a check to The Lucas LaFrance Fund, P.O. Box 478, Milton, VT 05468. To donate gifts for silent auctions or raffles, contact Jamie LaFrance at 893-2144 or Carly Buswell at 893-2792.