The Keller Laboratory at cc-TDI: (guest entry) Our Hope: “No Curative Measures” Ends Here

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.

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You Can Participate in our Novel Therapeutics Studies !

One would like to think that tangibly better treatments for rhabdomyosarcoma, medulloblastoma and other childhood cancers can be found in a matter of years, instead of tens of years. Finding new treatments starts with research, perhaps even a new research approach to identifying effective new treatments. The Children's Cancer Therapy Development Institute focuses on finding molecules in childhood cancers that can be directly turned off or on by drugs so that the tumor stops growing. Behind our novel approach is the use of genetically-engineered mice. Our Pediatric Preclinical Testing Initiative uses mice modified from before birth so that at a certain age, and in a certain tissue, the same mutations found in a child’s cancer are activated in the mouse. These special mouse models of childhood cancer can be used to test a treatment to see whether the tumor growth and spread (metastasis) can be reversed. The specific aspect of these mice having normal immune systems is a real plus, too, because white blood cells play an important role in how tumors evolve and respond to therapy.

Our program is designed around community participation. Through the Children's Cancer Therapy Development Institute, you can contribute directly to this grass-roots initiative. Donations through small gifts or grants will assist in studying compounds that may be effective in treating such childhood cancers as alveolar rhabdomyosarcoma, embryonal rhabdomyosarcoma, or medulloblastoma (the alveolar rhabdomyosarcoma model was featured by Dr. Keller's long time collaborator and former mentor, 2007 Nobel laureate Mario Capecchi, in his Nobel Prize lecture {see 16 minutes onward}.)

For additional information regarding supporting this program please contact Charles Keller at charles@cc-tdi.org. Results obtained through these studies will be shared with the National Cancer Institute’s Cancer Therapy Evaluation Program, as well as the Children’s Oncology Group, which designs clinical trials for childhood cancer.