(Official White House Photo by Tia Dufour)

On Wednesday March 20th our son Clay participated in a White House meeting led by Vice President Mike Pence to discuss the unmet needs of kids battling cancer.   Clay, who turned 13 in December, shared the story of his battle with Vice President Pence; Dr. Ned Sharpless, the Director of the National Cancer Institute (soon-to-be FDA Commissioner); and Dr. Doug Lowy, Deputy Director (and soon-to-be Acting Director) of the NCI.  Currently only 4 percent of every cancer research dollar spent by the federal government is invested in pediatric cancer.  But the Trump Administration is trying to do a better, by dedicating an additional $500 million over the next ten years to pediatric cancer.   Clay shared his personal experience battling PLGA brain cancer, which left a very emotional impression with the Vice President.   After the meeting, we spoke to the National Cancer Institute leadership of how this type of cancer faces two large disincentives to research funding:  

  1. There is NO adult variant for this brain cancer. This means that insights developed from more cost effective adult-based research which has broader patient pools does NOT benefit the pediatric disease. 
  2. It is still not possible to mimic this disease in the lab.  Many other pediatric cancers have animal models that allow new and potential therapies to be tested in the lab.  Because there is no model that allows potential therapies for PLGA’s to be tested in the lab. Therapies for PLGA are tested on kids themselves which is length, often toxic, and without known side effects both short and long term.  

We at IAA appreciate Vice President Pence’s kind invitation and the opportunity to advocate in person for federal investment in research infrastructure to help find a cure for this terrible disease. 

This has been a rough year so far for our son Clay. He has been in the hospital, and inpatient rehabilitation, since January. Clay has suffered from anemia, fluid on his lungs as a result of transfusions, ICU-syndrome from this treatment, and off the chart levels of pancreatic enzymes. The testing uncovered several spinal fractures and the chronic pancreatitis has caused an uncontrolled fear of eating. After a few weeks at Children’s National he was tranferred to Kennedy Krieger Institute where he is currently rehabilitating with intensive therapy. He is on yet another chemotherapy.

This Easter Saturday will mark the 10th year of Clay’s battle against brain and spinal cancer.   We are grateful for all of the dedicated talent of the doctors, nurses, techs and researchers; the love and compassion of family, friends, neighbors; and the prayers of the faithful all over the world which have helped us get through to this point.  

As Clay starts his 9th chemotherapy which is untested, we were glad to be included in the White House’s meeting and remind everyone that there is still so much work left to do for Clay and all of the kids like him who suffer from this type of brain cancer.