Parents of children with pediatric cancers find hope provide inspiration

July 8, 2011
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Will Lacey was just 7 months old when his parents learned in 2004 that he had neuroblastoma, a deadly cancer of the nervous system that accounts for 15 percent of all pediatric cancer deaths in the United States. Will’s early years were spent in endless rounds of chemotherapy and consultations with doctors in four states who declared his condition hopeless.

“As a parent, to be told ‘there is no hope for your child’ is unacceptable,” said Will’s father, Pat Lacey. “Initially, we felt that we were stranded on a desert island sending up smoke signals.”

On June 23, Pat Lacey joined 125 other parents, patient advocates, researchers and children’s cancer physicians at Van Andel Institute to discuss the latest research advances for neuroblastoma and medulloblastoma, a catastrophic form of brain cancer that most often strikes young children. These guests, participants in the 2011 Developments in Neuroblastoma Research Symposium, had important stories to share — stories of pain and frustration, hope and joy, but all too often stories of profound, unimaginable loss.

Most of these parents have spent years at the bedsides of their child, helping them through chemotherapy and other treatments that often have robbed these youngsters and their exhausted families of the vitality and quality of life they so richly deserve.

But despite this, many of the parents have dedicated themselves to establishing and leading patient advocacy groups and foundations that have helped to grow and sustain the Neuroblastoma and Medulloblastoma Translational Research Consortium and to support the groundbreaking work of its chair, pediatric oncologist Giselle Sholler, M.D., who was recruited in May to co-direct Van Andel Research Institute’s new Pediatric Cancer Translational Research Program along with VAI’s Craig Webb, Ph.D.

And this year, many of those who travelled to Grand Rapids and visited the Medical Mile for the first time also found something that has long eluded them: new strategies utilizing the latest breakthroughs in personalized medicine, and the most important weapon in any fight against catastrophic disease: hope.

Pat Lacey is director of business development for Thomson Reuters Corp. in his native Boston, where he also serves as president of the Friends of Will Cancer Foundation. On his first visit to Grand Rapids, he was impressed by what he saw, and he was also the bearer of inspiring news.

Under Dr. Sholler’s care since 2008, Will Lacey is now an active first-grader who plays baseball and is crazy about hockey. Though his tumors have not shrunk, neither have they grown substantially since he started his latest treatment regimen. In a video shown at the symposium, Will can be seen whooping it up at the victory parade celebrating his beloved Boston Bruins’ recent Stanley Cup victory.

“We choose to think of Will’s condition now as that of a chronic, but manageable disease like diabetes,” said Lacey.

Through his efforts with the Friends of Will Foundation and with the Neuroblastoma Alliance, Lacey has helped raise more than $1 million to fund neuroblastoma research — trying to fill in the funding gaps of the National Institutes of Health that allots only 6 percent of its research budget to pediatric cancers.

When he describes himself and his accomplishments, however, he sums it all up by saying, “I’m a dad. Everything else that I’ve done springs from the concern that a father has for his son.”

Naturally, Lacey said he would prefer that the national focus of neuroblastoma research be centered in Boston where it would be more convenient for Will’s treatment, but he said that he and Will are more than willing to travel to West Michigan if that’s what it takes.

“The day we got the call from Dr. Sholler that she was moving to West Michigan, we were able to know that someone sees the value of that work,” said Lacey. “West Michigan is where it’s going to happen, and I’m hoping that it’s going to happen in my son’s lifetime.”

“It is very rare to find a clinical and research group so focused on the individual patient and the outcome of that patient. That’s what makes the ‘personalized medicine’ approach of this program so unique.”

I’ll repeat something I said last month when we announced that Dr. Sholler was bringing her talents to Grand Rapids: This new initiative is undertaken with the best objective that I can possibly imagine — the goal of curing children with cancer.

At Van Andel Institute, we have no other objective that is more urgent or important than this one. We share these parents’ passion — and hope that they will serve as our ambassadors and colleagues so that together we can make a difference in the lives of children suffering the devastating effects of these two diseases.

When we opened the VAI Phase II expansion in December 2009, I promised that we would recruit the very best minds and most motivated scientists to our new facility, and that we would work night and day to impact human health, to spare this and future generations from debilitating disease, and to end the pain and suffering that has too often touched our lives.

I have faith that through Dr. Sholler and Dr. Webb’s continuing research efforts, and through the efforts of Dr. Deanna Mitchell and other pediatric oncologists at Helen DeVos Children’s Hospital, through the efforts of physicians throughout the entire national network of NMTRC clinical partners, and through the continuing support of these inspiring parents, children and families, the rest of this promise will be fulfilled.

David Van Andel is chairman and CEO of Van Andel Institute in Grand Rapids.

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