See also our related blog for the Pediatric Preclinical Testing Initiative.

Wednesday, March 14, 2012

(guest entry) Our Hope: “No Curative Measures” Ends Here

by Nettie Boivin
The Team Julian Foundation
I had never in my life heard the term “glioma” until this monster swept into our lives and threatened the life of our son. Julian was a healthy, handsome and fun-loving 4-year-old with huge eyes and an even bigger imagination. It was Nov. 29, 2010, that our beautiful boy was, seemingly overnight and out of nowhere, diagnosed with an inoperable brain stem glioma. Gripped by fear but determined to beat the odds, we researched the best doctors in the country and brought him under the care of top pediatric oncologists at St. Jude Children’s Research Hospital in Memphis.
Our diagnosis happened to be the deadliest of all brain tumors with “no known cause or cure.” It was unimaginable and impossible to process that we’d most likely lose our first-born within 18 months. Throughout Julian’s treatment, doctors used terms like “palliative measures” and “grim prognosis.” With every blow, we kept waiting for that next line - some promising shred of a breakthrough that may halt the heartbreak to come.  But much to our dismay, we discovered that little research was currently underway for pediatric gliomas and cures were still years away.
In only 7 intense months, filled with beautiful and bittersweet moments,  the incurable disease proved too much. We lost our sweet boy, Julian Bradley Boivin, on July 3, 2011, just three weeks after his 5th birthday.
Last March while at St. Jude, Julian met a little girl who also had a DIPG, and together they forged a friendship as two 4-year-olds discussing bravery techniques before daily radiation treatments. This girl's mother and I desperately hoped and prayed these two would be exceptions to this dreaded diagnosis. Now, only months after having to say goodbye to both children, we are committed to making sure our two angels help turn the tide on this incurable disease.
An autopsy to resect and study Julian’s tumor wasn't possible when he died over the 4th of July holiday weekend. However the little girl's doctors were able to remove her entire tumor after she passed on in late 2011. Through The Team Julian Foundation’s support of CureSearch for Children’s Cancer, we were told about an important opportunity to partner with Dr. Keller’s Lab and the DIPG Consortium to find chemo agents that would finally combat this sly disease. So, between funding through Julian's foundation and the donation of this little girl's tumor sample, we believe this is Julian’s and the little girl's way of having a big impact on a world they were a part of for such a short but wonderful time.
By supporting the DIPG Consortium, we hope to see a day very soon when other children and their families facing this disease won’t ever have to hear the words “no curative measures” again.