Boy with cancer seeks medical treatment overseas
Searching for a way to help their ailing 8-year-old son, Mike and Gloria Blankenship found hope for the future half a world away from their West Wheatfield Township home. Along the way, they also forged a special friendship in Amsterdam, Netherlands.
Andy Blankenship, who is embarking today on his second trip to Amsterdam with his parents, is traveling overseas to obtain the second of four treatments Tuesday that specialists say can extend his life.
There has already been a marked improvement in the United third-grader who received his first treatment Feb. 13. The treatment relieved the debilitating pain in the boy’s spine and hip caused by the progression of the fatal disease neuroblastoma, a cancer tumor in the adrenal gland, said his mother.
Even with the aid of crutches to help bear his weight, the youngster was sidelined from regular activities and attending school in the weeks before the first treatment. He was back in school after his two-week stay in Amsterdam and last week was snow-tubing with his friends.
‘I didn’t think he would be so active,’ his mother said. ‘I thought he’d still need his crutches. He doesn’t need them. Now that he is pain-free, he’s happier.’
It’s been a tumultuous life for the family, which includes three other children – Russell, 13, Sara, 11, and John, 6, who help operate the family’s 80-acre beef farm near Clyde. Mike Blankenship also works as a lab technician with Monitor Labs in Gibsonia. Andy was diagnosed with the disease in August 1997.
‘His pre-kindergarten checkup was good at the end of July,’ Gloria Blankenship said. ‘He was a little thin. Doctors said he was growing taller. It was two weeks after that checkup that he woke up from a nap and was limping. He got X-rays that were clean but an orthopedist ordered a bone scan that revealed the tumor.’
Andy would rather talk about Pokemon, dinosaurs or the upcoming soccer season than doctors, drugs and treatments.
‘As long as he looks and acts OK, everything is OK with our other children,’ Gloria Blankenship said. ‘They don’t quite understand all of it. Andy is private. He doesn’t like to discuss the medical end of it.’
After a stem cell transplant in 1997, Andy’s condition was in the maintenance stage, his mother said doctors told her. In an effort to stave off a relapse, his family arranged for Andy to undergo experimental vaccinations administered monthly at Maryland Children’s Hospital since last June. It failed to stop the progression of the disease, and Andy’s condition deteriorated a few months ago, said his mother.
‘He had fallen a few times on ice around Thanksgiving time,’ Gloria Blankenship said. ‘He got sore and achy.’
In December, he had an MRI and a bone scan to see if the disease was progressing. The test results were fine.
‘He does not have a bulky tumor,’ his mother said. ‘He has bony lesions present in the bone in his spine and hip. It’s likely these spots have been there since his diagnosis.’
Even with medication, Andy continued to suffer through severe pain. After Andy had a full medical ‘work-up’ at Children’s Hospital of Pittsburgh in January, Blankenship said she was told by Pittsburgh doctors that her son had few lesions, though the location of the lesions on his spine and hip caused the intense pain.
‘His knee was hurting,’ his mother said. ‘He was on crutches. It was hard for him. The motion of being on the hard floor at school hurt too much. He stayed home because of the pain.’
The Blankenships had discovered a different option for treatment through an online group that shares information about neuroblastoma. Gloria Blankenship, who belongs to a computer group of parents whose children have the same disease, found out about a treatment for her son from a woman in Amsterdam she met through the computer group. Through their online communications, Gloria Blankenship and Marian van Wijck forged a friendship. Van Wijck lives in Amsterdam with her husband, Arjan, and their 3-year-old daughter, Nike, who also has neuroblastoma.
The mother from the Netherlands shared information about Metaiodobenzylguanidine (MIBG) and the hyperbaric oxygen treatment with Gloria Blankenship.
The HO treatment delivers oxygen to the diseased bone and reduces the lesions.
Gloria Blankenship said the MIBG treatment, which damages and kills cancer with a radioactive isotope, was also recommended by Andy’s oncologist, Dr. Kim Ritchey, chief of oncology and hematology at Children’s Hospital of Pittsburgh.
‘Our decision to do the MIBG therapy in Amsterdam was partly based on his recommendation,’ Blankenship said. ‘It’s not a cure per se, but it can be. It (the disease) can be inactivated. It may not ever grow again.’
The Blankenships researched the treatments, which have been used in the Netherlands since 1984. They learned that a variation of the treatment also became available in the United States at Children’s Hospital of Philadelphia and at the University of Michigan three years ago.
The treatment was proven effective in the Netherlands with a 43 percent survival rate after three years with at least three treatments, according to Gloria Blankenship.
‘That they have 43 percent at three years for relapse is incredible,’ Gloria Blankship said. ‘We’re thinking double digits. There are children who have lived 10 to 12 years after treatment.’
The Blankenships’ insurance plan will not cover the $12,500 cost for each of the four combined treatments overseas since the hyperbaric oxygen treatment is still under investigation in the United States. ‘They said it was too investigational,’ Gloria Blankenship said. ‘The insurance would cover the treatment in the U.S. but it is a higher dose and done only once.’
In the United States, you can only get a one-time treatment of MIBG or a one-time treatment with a stem cell transplant, Andy’s mother said. Since Andy had already had a transplant, his parents didn’t believe a second transplant would benefit him, and the cancer can become resistant to chemotherapy treatments that go with transplants, Gloria Blankenship said.
‘In Amsterdam, they use a lower dose, which allows you to receive another treatment in four weeks. They have survivorship data,’ Andy’s mother said. ‘The oncologists who do the MIBG in Amsterdam are widely recognized. But here, in the United States, they have to use their own data and trials. We made a conscious choice to do therapy in Amsterdam when we saw the survivorship and the cost. Why would you do anything else?’
Though the Blankenships knew they could not afford to pay the $50,000 needed for the four treatments, they made plans for the first treatment and used their savings to cover the cost.
‘We reserved a slot for the treatment before we knew we would go there,’ Blankenship said. ‘Then we learned about the American programs. We decided that the treatment in the Netherlands would be better for Andy.’
Since the boy’s diagnosis more than three years ago, family and friends have helped the Blankenships by helping to care for the other children during Andy’s hospitalizations. Volunteers also held fund-raisers and several church groups throughout Indiana County conducted prayer chains.
Once the decision was made to travel overseas for the treatment, the Blankenships had only a few days to get ready for the trip, obtain passports and ask others to care for their other children during their two-week stay.’It’s just surreal,’ Gloria Blankenship said about the experience. ‘It has been from the get-go.’
The passports had to be processed quickly with help from U.S. Rep. John Murtha, a Johnstown Democrat, and delivered through overnight mail. Then, Gloria Blankenship discovered her birth certificate was never registered, and she had to go to Pittsburgh to get the copy.
Andy and his parents flew from Pittsburgh to Atlanta and then flew another 9 &*#189; hours to Amsterdam. They were grateful for their new friends, the van Wijcks, who met them at the Amsterdam airport and transported them to the Ronald McDonald House.
‘They were kind enough to help us,’ Blankenship said. ‘They picked us up at the airport, gave us groceries and a cell phone. They rented a wheelchair for Andy, which he used. Our children met and exchanged gifts.’
Andy first receives a radioactive isotope in a lead-lined room. Since he is ‘radioactive,’ he cannot be touched for four days.
‘He was scared,’ his mother said. ‘He was alone in a separate room with a video camera on him and we’re in another room with a video camera on us. We talked to each other through the cameras.’
Andy and his parents, who had to take a liquid thyroid protector, could also visit daily though they were separated by a lead shield.
‘We can visit him three times a day, but we have to wear a mask, gloves and a lab coat,’ Gloria Blankenship said. ‘We have to stand behind a lead shield. We can’t touch him. It’s rough that I can’t hug him. He’s radioactive, his saliva, his skin.’
His third treatment will fall on his birthday, April 14. His parents won’t even be able to hug him that day, when he turns 9 years old.
Two days after receiving the isotope, Andy has the hyperbaric oxygen treatment.
‘He is wheeled through the hospital on a bed,’ his mother explained. ‘There is a special elevator for radioactive children.’
Since only one parent is permitted to be in the chamber where the oxygen treatment is administered, Gloria Blankenship stayed with Andy and played the card game Uno with him.
‘It’s a hyperbaric oxygen chamber like divers use,’ Gloria Blankenship said. ‘It’s like going down in a submarine. They pump more air to increase pressure into the chamber. It brings oxygen to the bones.’
She said that the bony lesions on the diseased bones, which have limited oxygen, are reduced through the treatment.
‘It takes about 10 minutes to get the pressure up,’ Andy’s mother said. ‘They do it slowly so your ears don’t pop. They say, ‘Going down.’ It sounds strange because the pressure is going up, and we’re not going anywhere. … Andy wears an oxygen mask and takes the treatment. I had to wear a mask during the decompression.’
Though the treatment takes effect immediately, it may not show clinically for days. By the fourth day, when the radiation wore off, Andy’s pain had dissipated. The family is elated that the treatment relieved Andy’s pain.
‘The first weekend we were in Amsterdam, the van Wijcks took us to tour the city,’ Blankenship said. ‘Marian and Arjan and their relatives have been kind, generous and helpful. We could not have done this without their help.’
Gloria Blankenship contacted Andy’s oncologist in Pittsburgh upon their return home.
‘He said that while the MIBG and hyperbaric oxygen therapy is not a home run, it should be pursued and pursued vigorously,’ Gloria Blankenship said. ‘He was happy that Andy’s pain was gone. The doctors in Pittsburgh are working in cooperation with the doctors in Amsterdam. The Pittsburgh doctors can’t say much about the hyperbaric treatment because it is so new to them.’
Andy’s improved condition keeps his family and friends optimistic. For updates and diary entries on Andy’s progress, the family maintains a World Wide Web site at www.caringbridge.com/pa/andy.