Jen presents Autopsy Barrier study results at APOSW

This year’s Association of Pediatric Oncology Social Workers topic was Exploring Sustainability: Promoting Pediatric Oncology Social Work in the Changing Healthcare Environment. 

   

12 posters were selected for the conference – during the two hours poster presentation many people stopped by and were impressed with our work and the idea of a Legacy Gift, saying that they have many patients whose family could benefit from leaving such a gift. Attendees had a lot of great questions and many asked for further information or planned to check our www.ccurefast.org website for more information on guidelines/how to’s and our handouts. Melissa Hill of the Northwest Sarcoma Foundation joined in the poster presentation of our joint work. 

Other topics of discussion/workshops were: 

  

Sustaining Ourselves: Healing Ourselves While Healing Others

The CARES Program:  Utilizing the Community to Increase Sustainability of Patients and Families

Social Skill Training For Adolescent and Young Adult Brain Tumor Survivors

Establishing Skill Sets:  Staying the Course When Faced With Pediatric End of Life Challenges

   

our thanks as always to Nancy Goodman, the inspiration for study and efforts!

Our thanks to the Faith Fulmer Foundation

We are grateful to JoLayne, Lou and the Medford community supporting the Faith Fulmer Foundation for their advocacy of our personalized therapy clinical trial project for dogs with osteosarcoma.  It is an honor to be part of Faith's rememberance.  

We are so proud of Lance

Congratulations to Lance Burrell, an undergraduate member of our rhabdomyosarcoma research team (back in the Capecchi lab days) who has graduated from Weber State University with a Master of Science in Radiological Sciences, Emphasis in Cardiology.  Lance has always been dedicated to patient care, and to have completed graduate school while working is an impressive accomplishment for Lance and his whole family.

MGH & Stanford

My thanks to hosts David Langenau at Massachusetts General Hospital and Lynn Million & Kristen Ganjoo at Stanford University, respectively, for the opportunities to present our sarcoma research to their Cancer Centers. The MGH talk highlighted exciting work by Jinu and Ken in our lab, whereas the Stanford talk highlighted separate work by Jinu and Lara.  It was a busy week of coast-to-coast travel, but well worth the scientific interactions.  The sarcoma research at each institution is superb.  

Fueling Osteosarcoma Research

Our sincere thanks to the Trey Foote Foundation and the graduating class of the International Air & Hospitality Academy in Vancouver, WA, who have raised funds for a research microscope.  This microscope will be used to study patient-derived primary tumor cell cultures from Vancouver-Portland area children, and dogs, with osteosarcoma.  The ultimate goal of this research is individualized, molecularly-targeted therapy for patients with osteosarcoma.

Trey's remarkable spirit is described here and can be seen tonight at 6:30pm PST on Portland tv station KATU.

[ Watch the KATU video here. ]

COG and AACR

The Children's Oncology Group meeting was March 27 - 30 in Minneapolis.  Presentations were given by Jinu on new targeted therapies for undifferentiated sarcomas, and an update of the DIPG preclinical consortium was given by Charles.  
  
The AACR meeting is now in progress, and beginning yesterday with the session on Modeling Pediatric Malignancy where Charles presented, "integrative biology of rhabdomysarcoma
using genetic murine models" and attended the Pediatric Preclinical Testing Program working meeting.  The Pediatric Cancer Town Hall meeting is tonight.  
  
A key new presentation from the Raabe lab is tomorrow, "High-level activation of the Notch pathway in diffuse intrinsic pontine glioma" by Hutt et al (A Johns Hopkins - NCI consortium).  Also presented by Dr. Ian Pollack are the promising early results of a DIPG vaccine trial (caveats not withstanding).  

(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.