Those of you who saw the Mckenna Claire Foundation’s (MCF) cryptic Facebook post on Friday morning may have been wondering where we spent our weekend. Early Friday morning, Dave and I, accompanied by a few of our board members and a generous friend Ryan (our cinematographer), flew to the Bay Area. Once there, we traveled to Stanford University to meet with Dr. Michelle Monje. Dr. Monje’s lab is dedicated to finding a cure for DIPG and it is where the biopsy of McKenna’s tumor was sent after she lost her battle in July. Our goal was threefold:
- To interview Dr. Monje and learn more about her research;
- To view Dr. Monje’s lab and see McKenna’s cells in action; and
- To present our first gift of $30,000 from the Mckenna Claire Foundation towards Dr. Monje’s continued research efforts.
To say Dr. Monje was gracious is an understatement. She is a brilliant scientist with a compassionate heart, someone who cares deeply about the work to which she has committed her professional life. She patiently sat for an interview, answering our questions in laymen’s terms, helping us better understand this horrific and complex disease, as well as shed light on funding and research issues. The interview will be used at future MCF events, featured as a cornerstone of our website, and also be available through other public forums such as Youtube. We think you will find it as enlightening as we did.
Next it was on to the lab itself. One of the reasons that so little progress has been made on behalf of this disease is that the location of the tumor makes biopsies on living patients dangerous. In addition, broaching the subject of donation of a child’s brain and tumor tissue is delicate and heart wrenching. For these reasons , there have not been cell lines available to conduct research on DIPG until very recently. Dr. Monje currently has four viable cell lines that can, or will be, used for genetic and molecular coding and/or drug screenings. McKenna’s tissue created one of these four lines.
Dr. Monje allowed us to see McKenna’s tumor cells in various stages of growth. As a mother, I cannot tell you how painful this was for me. I had not felt that depth of pain since the day we lost McKenna. To know that the part of my daughter that survives is the very thing that killed her is the cruelest of ironies. To see it thriving was heart-wrenching. It took my breath away. And yet, it is McKenna’s legacy. A piece of her is still alive and, true to form, she is still fighting the good fight on behalf of others. To know that these cells may help researchers find an answer to this disease is the only thing that gives some meaning to our most painful and senseless loss. To have hope that one day we may spare a child or another family from this pain is the very thing that keeps Dave and me going and is the inspiration behind the McKenna Claire Foundation.
The financial donation made by the McKenna Claire Foundation will go towards a lab clinician whose purpose is to propagate and disseminate these cell lines. This will allow researchers such as Dr. Monje, and others around the world, to decode this disease and search for drugs that will effectively fight it. Already, through the first viable cell lines, researchers have been able to isolate the genome where they believe the cancer originates. Since there has been no progress made in treatment in over 30 years, and no sign of a cure, this is a tremendous first step in the battle against DIPG.
We hope you will join us as we continue to raise money to fund our fight for a cure for DIPG and other pediatric brain cancers.
Kristine and Dave Wetzel
Mckenna Claire Foundation
See more photos from this incredible day: McKenna Claire Foundation Visits Stanford And Dr. Monje