We often compare our children to warriors - because of the strength and bravery they show, but also because they both face a life and death battle. Some may not find this post appropriate for a pediatric cancer page, but in my mind our children and our service men/women who return from war and suffer from PTSD face the same uphill battle when it comes to getting the care and cures they need. Please read...

This Memoral Day hits particularly hard. This is my former student Edwin Fuentes. Last week he lost his life to circumstances directly related to PTSD.

Edwin was one of those students who become like one of your own children. He was in my class when I taught middle school, and then again in high school when McKenna was diagnosed, and we stayed close through his graduation, his decision to join the Army, and his deployment to Afghanistan. He had always dreamed of joining the service, and was so proud to defend the United States and all that it stood for. But, he struggled with what he saw and what he did while deployed. There were many long phone calls between he and I - he getting back from a mission in Afghanistan, me sitting on my front porch - trying to make sense of what was happening around him. But he never lost his belief that what he was doing for his country was important and that the men and women who served with him were the most honorable people he would ever know.

When Edwin came home from war, he found it difficult to adjust. He lost many friends over there, and suffered from survivors guilt as well as many other effects of PTSD. He sought help, he married the love of his life (also one of my students), went back to school and work, had a little boy who is his spitting image, and still the demons of war followed him. I could always tell when the PTSD was rearing its ugly head, he became a different person, one who was fearful and difficult to reason with, but always he was able to find his way back.

It breaks my heart to think that Edwin survived war, only to come back home and lose his life to circumstances that stemmed directly from PTSD. On this day, please remember those men and women who have given their lives in defense of our country, but please also do something to actively demand that we do more for those that survive but continue the war here at home. We, as a country, do not do enough to make sure that our veterans are taken care of when they return. We owe them more.
Edwin - you will always be in my heart. Thank you for your service to our country, but most of all thank you for trusting in me and allowing me to be a part of your life at a time when we were both struggling.
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An image from our trip to Monje Lab at Stanford this week. Those glimmers of hope continue to shine.
"There was never a night or a problem that could defeat sunrise or hope" - Bernard Williams
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Thank you to DRVER SPG for choosing the McKenna Claire Foundation for Pediatric Brain Cancer Research as your charitable partner at your recent DRIVER SPG partner open house. We are grateful for your support and honored to have you be part of the pediatric brain cancer solution.

Special thank yous go to Matt Moser and Karl Kreutziger of DRIVER SPG for connecting the community dots and supporting so many worthy causes through out the year.
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Sometimes Facebook's "On This Day" has a way of sucker punching you. I wrote this last year on the 5 year anniversary of Party With a Purpose. It's almost inconceivable that another year without our girl has already gone by, but even more unfathomable is the fact that part of the reason our community continues to grow is that we have lost beautiful children like Colin, Brooke, Katherine, Josh, Hollis, Parker, and Gena......and that their parents now have to feel this way......

"This showed up today as a memory from my brother's timeline. The very first Party With a Purpose. 5 years ago today. I've seen this photo hundreds of times, but seeing it with the date attached, seeing undeniably that the 5 year mark of her death is coming, knocked the wind out of me. Followed by sobs......

It's the first photo that I have seen that has appeared on Facebook memories that actually came from that year (we didn't share McKenna's journey publicly on Facebook at the time). And it unleashed so many emotions.

Longing. To hold her one more time and feel her arms around my neck. To braid her hair again. To see her playing in the street. To hear her voice. To hear her sing (which she did all the time). To hear her laughter. To know who she would be, now, as an almost 13 year old.

Anger - That this beautiful force of nature is gone. That what she, and all children with DIPG, have to endure is so incredibly barbaric and painful. That for so long this disease was ignored. That there was nothing, absolutely nothing, we could do to save her life, to save her from suffering.

Pride. Pride in my girl (and her best friend Sophie) as she stood up, even with her compromised abilities and her crooked smile that she hated, and sang Katy Perry's Firework in front of hundreds of people. Because she loved to sing. Because her music teacher, Ms. Nelda, taught her how to conquer her fears and put on a show. Because DIPG was NOT going to steal the things she loved to do. And in Sophie, who hated being the center of attention, standing by her best friend's side joining her voice with McKenna's. Together, those two could conquer anything.

Gratitiude. For our family, friends, and community who surrounded us with love from the day McKenna was diagnosed, and who organized this party in support of our girl, hoping that the funds raised would help find a treatment that would give us more time. Incredibly, those people are still with us today, still coming together to fight in McKenna's name. Our community has adopted the DIPG community, making themselves vulnerable to the heartbreak it brings, but loving the children and families who have come behind us with the same passion and determination they have given us.

This picture, these people, are not only the reason Party with a Purpose exists, they are the roots of our foundation. It is because of them - and all those who have joined us since, who didn't know McKenna but have been moved by her story - that we are able to continue moving forward.

When we have events, or talk about our journey, this is what we want people to know. McKenna Claire Foundation is not one child or one family, it is a community of good and loving people determined to make a difference. And when good people come together for a cause, anything is possible.

Thank you all - not only for loving our girl, but for continuing to be champions of HOPE."
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East Coast to West Coast, families of two angels and a warrior working to fund brain cancer research and provide integrative medicine to give our kids the lives they deserve.

Ty Louis Campbell Foundation, McKenna Claire Foundation, and MaxLove Project. We are #bettertogether
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