Childhood Cancer Awareness Month- Avery Still Making an Impact
Inverted eye. Fatigue. Dizziness. Loss of mobility. Loss of independence. Full right-side paralysis. Incontinence. Severe steroid-induced weight gain. Mood swings. Body changes. Severe, debilitating headaches. Experimental drugs. Vomiting. Needles and pokes. Countless MRIs and CT scans. Hospital stays. Constant nausea. Brain surgeries. Head shaves and patches of lost hair. Softening of the voice. Stretch marks and thinning skin. Hearing loss. Inability to move eyes side to side. Drooling. Full body paralysis. Loss of swallowing. Loss of eating. Loss of speaking. Loss of breathing. Loss of living. Loss of…everything…
These are just some of the symptoms of DIPG (Diffuse Intrinsic Pontine Glioma), all of which our Avery experienced in her fight. In fact, she never saw any improvement with radiation, no “honeymoon period,” just a growing list of rapidly increasing symptoms. We could see the level of severity of her tumor for ourselves as we painfully watched her rapid decline over a 7.5-month period.
Last week we received more information on Avery’s tumor donation and her progress in medical research. We found out that her tumor has been shared with 20 research labs in five different countries. Research, tumor donation, funding. It’s what will lead us to a cure. In fact, it’s what we fight for every day at Avery Huffman Defeat DIPG Foundation: Funding DIPG medical research.
In a recent study recap out of Stanford University, headed by Dr. Michelle Monje, Avery’s tumor played a significant role. The complete study researched the cellular and molecular mechanisms that enable tumor growth outside of the pons into the sub-ventricular zone, or SVZ (a common place for tumor growth among DIPG patients and often frequent among other forms of pediatric and adult gliomas as well). Out of all the study samples (unique child and adult donated tumors), Avery’s tumor indicated having the highest level of invading cells. She is noted in the figure as letter “I” or SU-DIPG-XXIV (or DIPG patient 24). Even out of all the others in the study, to see your “child” (or tumor) as the one with the highest level of invading cells, it officially tells us how severe her specific tumor was. It also confirms how lethal and rapidly growing it was, despite any of our attempts to slow it down…especially comparative with others.
The results of this study provides researchers with a useful start into figuring out a way to reduce the spread of the main pons tumor into the sub-ventricular zone (SVZ). We hope these findings can lead to future effective treatments that reduce tumor growth and spreading. Our hope is also that this research, coupled with future research, will aid us in a cure for DIPG.
Avery, keep making us proud. We’ll keep doing our part to make a difference and Defeat DIPG.
To see the full study report go to:
To read more about Dr. Monje and her lab at Stanford University, please visit: https://med.stanford.edu/monje-lab.html