6-21-15
http://www.syracuse.com/news/index.ssf/2015/06/faith_and_family_helps_pompey_father_of_9_recover_from_rare_double_transplant.html
Syracuse, N.Y. – Lee VanBoden of Pompey has a lot riding on an experimental kidney transplant he received in Chicago in April.
If the procedure works, he won't need a new kidney every 15 or so years. It could be the one to last the rest of his life.
There's more at stake: He has a wife and nine children, ages 8 to 16, who are counting on him. Five of his kids are adopted.
They temporarily moved to Chicago nearly three months ago to be by his side while he recuperates. VanBoden, who is self-employed, is the family's sole breadwinner. His wife home schools the children.
"I want to be around for them," VanBoden said.
VanBoden, 45, has polycystic kidney disease, an inherited disorder in which clusters of cysts develop in the kidneys. The cysts, which sometimes grow very large, can lead to kidney failure and death unless the patient goes on dialysis or receives a kidney transplant.
When doctors at Northwestern Memorial Hospital transplanted a kidney into VanBoden in April, they also transplanted the donor's stem cells into him. That's what makes this procedure unusual.
The operation, part of a clinical trial that began in 2008, is designed to let kidney recipients avoid having to take anti-rejection drugs for the rest of their lives.
The stem cells are engineered to trick the recipient's immune system into thinking the donated organ is the recipient's own, gradually eliminating the need for anti-rejection drugs. Northwestern is the only hospital in the nation doing the procedure.
"We believe it's transformative," said Dr. Joseph Leventhal, a transplant surgeon at Northwestern leading the trial. "One kidney for life would be a huge advance for the field."
Kristi Mullin, 37, of Lakeport, donated her kidney and stem cells to VanBoden. Her family and the VanBodens have been friends since meeting at Abundant Life Christian Center in East Syracuse in 2007.
"It's humbling when someone will go through all that when there's no need for them to, just out of the kindness of their heart," VanBoden said.
Mullin says much the same about VanBoden and his wife, Angelique. "They are sacrificial and selfless people," she said.
In 2011 the VanBodens, who already had four children, adopted four more. Angelique said they decided to adopt after realizing they wanted more children. Their biological children at the time were ages 7, 8, 9 and 11. The adopted kids, all biological siblings, were 3, 4, 5 and 6.
Last year they adopted another child, a 9-year-old girl, who had been in the foster care system five years. Angelique, a former Syracuse city school teacher with a doctorate in education, home schools all of them.
"There are days when we still say, 'What the heck are we doing?' "Lee said. "But we felt God had that as a plan for us to do."
VanBoden said before the adoption he and his wife talked to their biological children and they supported the idea. "They wanted to help these kids," he said.
The four siblings they adopted had been neglected. "They had never been in stores. They had never been to a restaurant. They didn't know how to hold a fork. They didn't know how to take a shower," Lee said. Each one of the VanBoden's biological kids helped out by mentoring their adopted brothers and sisters, and teaching them basic life skills.
The recovery period for the operation VanBoden went through is much longer than a traditional transplant. A traditional transplant recipient goes home three to four days after surgery. VanBoden said doctors told him it will be three to six months before he feels well enough to work and return to normal activities.
A week before the transplant, VanBoden received chemotherapy and radiation to wipe out part of his immune system so the donated stem cells would have more room to grow in his body. He had to stay in Chicago after the operation, heading back to the hospital several times a week for tests that can last three to eight hours. His return date to New York is not known.
When he first left the hospital, VanBoden would get exhausted after walking three feet from his bed to the bathroom, or from eating a half plate of food.
"They told me it would be bad and I would have no energy, but I had no idea how difficult it would be," he said.
He and his family are temporarily living in a house they rented near the Chicago hospital.
"We couldn't see leaving nine kids for three months with one person or splitting them up," Angelique said. The VanBodens feared any separation would be particularly difficult for their newest children.
"I couldn't see having Lee go through this by himself. It was really the only option," Angelique said.
So the VanBodens packed the kids into their 15-seat passenger van in April and drove to Chicago. They split the trip into two days, making an overnight stop in Sandusky, Ohio where they stayed at a waterpark hotel.
Angelique said her family's religious faith is getting them through this tough time.
"Without faith we wouldn't be able to do it," she said. "We are completely trusting this is how Lee is getting healed. God has put everything in place for this exact time."
She continues to home school the children in Chicago. Angelique teaches some subjects like history to all nine kids simultaneously. The younger kids will work on materials geared to their grade levels, while the older ones will work on more challenging assignments. For other subjects like math, the students are broken into different groups. Some learning is done online. The VanBoden's 16-year-old daughter, for example, just finished her first semester of college online.
Sarah Sujkowski, Angelique's cousin, started a fundraising page to help the VanBodens with their expenses. The rent on the VanBoden's house in Chicago is about $20,000 for three months.
"For them to uproot and go to Chicago was a huge deal," Sujkowski said. "This is a homeschooling family that lives out in the country."
In Pompey, the VanBodens live in a house they gutted and remodeled on Brown Gulf Road. It sits on five acres where their kids ride their bikes, climb trees and play in a pond. The rental house in Chicago is about 5,500 square feet with six bedrooms and 4 ½ bathrooms. It has a sidewalk and an 8- by 10-foot yard.
Lee operates his own business, Dents Disappear in Liverpool, which removes small dents from cars. He has not worked since February and is not sure when he will be able to resume working. He has one employee operating the business. VanBoden and one of his daughters are doing all the bookwork and billing for the business remotely on a laptop in Chicago.
VanBoden has known since he was diagnosed with polycystic kidney disease in his early 20s that someday he might need a kidney transplant.
VanBoden's father and grandfather had the disease. His grandfather died of PDK in his early 60s. VanBoden's father, who died in 2010 at age 70, received a kidney transplant, but developed skin cancer and other side effects from the drugs he had to take to prevent his body from rejecting the organ.
The anti-rejection drugs also damage the transplanted kidney over time. Kidneys from living donors last an average of 15 to 20 years. The goal of the experimental operation is to provide a kidney transplant recipient an organ that lasts a lifetime. Patients who get the operation are gradually weaned off anti-rejection drugs.
VanBoden was the 29th patient to receive the combination kidney-stem cell transplant at Northwestern since the trial began in 2008.
Doctors there removed one of his football-sized kidneys that weighed 12 pounds to make way for the transplanted kidney. A healthy kidney is usually the size of an adult fist and weighs about a quarter of a pound.
Doctors will eventually take out VanBoden's other diseased kidney, which also weighs about 12 pounds.
When he had both of the bad kidneys, VanBoden said, he looked like he was pregnant with twins.
VanBoden repeatedly tells Mullin, his donor, "I don't know how to thank you."
Mullin tells VanBoden he can thank her by living a good, long life.
http://www.syracuse.com/news/index.ssf/2015/06/faith_and_family_helps_pompey_father_of_9_recover_from_rare_double_transplant.html
Syracuse, N.Y. – Lee VanBoden of Pompey has a lot riding on an experimental kidney transplant he received in Chicago in April.
If the procedure works, he won't need a new kidney every 15 or so years. It could be the one to last the rest of his life.
There's more at stake: He has a wife and nine children, ages 8 to 16, who are counting on him. Five of his kids are adopted.
They temporarily moved to Chicago nearly three months ago to be by his side while he recuperates. VanBoden, who is self-employed, is the family's sole breadwinner. His wife home schools the children.
"I want to be around for them," VanBoden said.
VanBoden, 45, has polycystic kidney disease, an inherited disorder in which clusters of cysts develop in the kidneys. The cysts, which sometimes grow very large, can lead to kidney failure and death unless the patient goes on dialysis or receives a kidney transplant.
When doctors at Northwestern Memorial Hospital transplanted a kidney into VanBoden in April, they also transplanted the donor's stem cells into him. That's what makes this procedure unusual.
The operation, part of a clinical trial that began in 2008, is designed to let kidney recipients avoid having to take anti-rejection drugs for the rest of their lives.
The stem cells are engineered to trick the recipient's immune system into thinking the donated organ is the recipient's own, gradually eliminating the need for anti-rejection drugs. Northwestern is the only hospital in the nation doing the procedure.
"We believe it's transformative," said Dr. Joseph Leventhal, a transplant surgeon at Northwestern leading the trial. "One kidney for life would be a huge advance for the field."
Kristi Mullin, 37, of Lakeport, donated her kidney and stem cells to VanBoden. Her family and the VanBodens have been friends since meeting at Abundant Life Christian Center in East Syracuse in 2007.
"It's humbling when someone will go through all that when there's no need for them to, just out of the kindness of their heart," VanBoden said.
Mullin says much the same about VanBoden and his wife, Angelique. "They are sacrificial and selfless people," she said.
In 2011 the VanBodens, who already had four children, adopted four more. Angelique said they decided to adopt after realizing they wanted more children. Their biological children at the time were ages 7, 8, 9 and 11. The adopted kids, all biological siblings, were 3, 4, 5 and 6.
Last year they adopted another child, a 9-year-old girl, who had been in the foster care system five years. Angelique, a former Syracuse city school teacher with a doctorate in education, home schools all of them.
"There are days when we still say, 'What the heck are we doing?' "Lee said. "But we felt God had that as a plan for us to do."
VanBoden said before the adoption he and his wife talked to their biological children and they supported the idea. "They wanted to help these kids," he said.
The four siblings they adopted had been neglected. "They had never been in stores. They had never been to a restaurant. They didn't know how to hold a fork. They didn't know how to take a shower," Lee said. Each one of the VanBoden's biological kids helped out by mentoring their adopted brothers and sisters, and teaching them basic life skills.
The recovery period for the operation VanBoden went through is much longer than a traditional transplant. A traditional transplant recipient goes home three to four days after surgery. VanBoden said doctors told him it will be three to six months before he feels well enough to work and return to normal activities.
A week before the transplant, VanBoden received chemotherapy and radiation to wipe out part of his immune system so the donated stem cells would have more room to grow in his body. He had to stay in Chicago after the operation, heading back to the hospital several times a week for tests that can last three to eight hours. His return date to New York is not known.
When he first left the hospital, VanBoden would get exhausted after walking three feet from his bed to the bathroom, or from eating a half plate of food.
"They told me it would be bad and I would have no energy, but I had no idea how difficult it would be," he said.
He and his family are temporarily living in a house they rented near the Chicago hospital.
"We couldn't see leaving nine kids for three months with one person or splitting them up," Angelique said. The VanBodens feared any separation would be particularly difficult for their newest children.
"I couldn't see having Lee go through this by himself. It was really the only option," Angelique said.
So the VanBodens packed the kids into their 15-seat passenger van in April and drove to Chicago. They split the trip into two days, making an overnight stop in Sandusky, Ohio where they stayed at a waterpark hotel.
Angelique said her family's religious faith is getting them through this tough time.
"Without faith we wouldn't be able to do it," she said. "We are completely trusting this is how Lee is getting healed. God has put everything in place for this exact time."
She continues to home school the children in Chicago. Angelique teaches some subjects like history to all nine kids simultaneously. The younger kids will work on materials geared to their grade levels, while the older ones will work on more challenging assignments. For other subjects like math, the students are broken into different groups. Some learning is done online. The VanBoden's 16-year-old daughter, for example, just finished her first semester of college online.
Sarah Sujkowski, Angelique's cousin, started a fundraising page to help the VanBodens with their expenses. The rent on the VanBoden's house in Chicago is about $20,000 for three months.
"For them to uproot and go to Chicago was a huge deal," Sujkowski said. "This is a homeschooling family that lives out in the country."
In Pompey, the VanBodens live in a house they gutted and remodeled on Brown Gulf Road. It sits on five acres where their kids ride their bikes, climb trees and play in a pond. The rental house in Chicago is about 5,500 square feet with six bedrooms and 4 ½ bathrooms. It has a sidewalk and an 8- by 10-foot yard.
Lee operates his own business, Dents Disappear in Liverpool, which removes small dents from cars. He has not worked since February and is not sure when he will be able to resume working. He has one employee operating the business. VanBoden and one of his daughters are doing all the bookwork and billing for the business remotely on a laptop in Chicago.
VanBoden has known since he was diagnosed with polycystic kidney disease in his early 20s that someday he might need a kidney transplant.
VanBoden's father and grandfather had the disease. His grandfather died of PDK in his early 60s. VanBoden's father, who died in 2010 at age 70, received a kidney transplant, but developed skin cancer and other side effects from the drugs he had to take to prevent his body from rejecting the organ.
The anti-rejection drugs also damage the transplanted kidney over time. Kidneys from living donors last an average of 15 to 20 years. The goal of the experimental operation is to provide a kidney transplant recipient an organ that lasts a lifetime. Patients who get the operation are gradually weaned off anti-rejection drugs.
VanBoden was the 29th patient to receive the combination kidney-stem cell transplant at Northwestern since the trial began in 2008.
Doctors there removed one of his football-sized kidneys that weighed 12 pounds to make way for the transplanted kidney. A healthy kidney is usually the size of an adult fist and weighs about a quarter of a pound.
Doctors will eventually take out VanBoden's other diseased kidney, which also weighs about 12 pounds.
When he had both of the bad kidneys, VanBoden said, he looked like he was pregnant with twins.
VanBoden repeatedly tells Mullin, his donor, "I don't know how to thank you."
Mullin tells VanBoden he can thank her by living a good, long life.