"Here, It's Different" Book | Page 24

THE NEW POSSIBILITY of Surviving a Brainstem Ganglioglioma

In October 2012 , doctors found a tumor in then 5-year-old Cash McCandless ’ brain . He was quickly referred to Children ’ s Hospital Colorado , where he underwent an intense 15-hour surgery to remove his ganglioglioma tumor .
Six months later , a metastatic tumor returned and was found to have a BRAF V600E mutation , which , until recently , was an untreatable form of cancer .
That was in spring 2013 , when Nick Foreman , MD , founder of the Neuro-Oncology Program at Children ’ s Colorado , had just published a new treatment for this type of pediatric ganglioglioma .
In 2010 , Dr . Foreman encountered a 16-year-old patient who had the BRAF V600E ganglioglioma of the brainstem . Conventional therapy had not worked for her — or for anyone with this kind of tumor . But Dr . Foreman knew that for adults who had metastatic melanomas caused by the same mutation , they ’ d seen successful treatment with vemurafenib , a BRAF enzyme inhibitor . Though it had never been studied before in children , or for a ganglioglioma , he wondered if it might work .
It did , and she became the first person with the BRAF V600E brainstem ganglioglioma to survive ( she is now in college ).
Dr . Foreman and his colleagues published this single success in the Journal of Clinical Oncology in 2013 , which opened the door to study the treatment in other children with a similar mutation .
Jean Mulcahy-Levy , MD , one of Dr . Foreman ’ s fellow pediatric neuro-oncologists at Children ’ s Colorado , took Dr . Foreman ’ s successful experience in treating the brainstem ganglioglioma and began studying it in additional patients , including Cash , whose cancer returned just as she began her study . He was only 6 years old at that time , and would be the youngest patient treated with this new drug for this condition . Because Children ’ s Colorado was first to publish on this experience , Dr . Mulcahy-Levy felt confident treating Cash with what could be considered a risky new treatment .
“ Mom was a go because it was his only true chance ,” Dr . Foreman says . “ If he hadn ’ t come here he wouldn ’ t have had the option .”
Cash had therapy with vemurafenib and vinblastine for one year . He finished therapy in May 2014 and remains cancer-free .
“ I can ’ t tell you how blessed I am that Children ’ s Colorado is 15 minutes from my house ,” says Cash ’ s mom , Shelly McCandless . “ There ’ s something amazing about the fact that Drs . Foreman and Mulcahy-Levy were here and offered what we needed . And the fact that we liked them was even better .”
“ If this had happened a year or two before , Dr . Mulcahy-Levy would have told us it was end of life ,” Shelly continues . “ Instead , we have this thriving young kid .”
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CANCER