About This Grey Matters

Hi, I’m Amanda, and this is my page to blog about life after learning of my son’s brain tumor diagnosis. Well, that’s what it started out as, anyway. It was a way for me to update family and friends who lived far away. It changed, though, for a few reasons, and I hope if you are a new reader, you will still find it relevant.

These days we are very busy with the Dragon Master Foundation, which is arming researchers with better tools to fight cancer. Our immediate goal is a database where genomic and clinical data can be stored side by side. We have partnered with four leading children’s hospitals to start, and we plan to expand into adult cancers as well. This is an unprecedented project, and we are so eager to share it! You will find posts about Dragon Master Foundation mixed into the blog, but here’s how we got started down this path:

David was a very loveable, funny, sweet, intelligent and weird 16 year old boy. He would be mad if I didn’t include the word weird because he prided himself on that most of all. He had blond hair and blue eyes, and I think he was incredibly handsome, but since I’m his mom, I guess you’d expect me to think that. 🙂

David’s dad & I are divorced, which mean he and his sister, Austin spent time traveling between our homes. At first, that was across town, and then it was across country. Well, half the country… Virginia to Kansas. David and Austin had just been back at their dad’s a few days after our summer visit, when David was struck with a debilitating headache. A trip to the emergency room and some powerful drugs got him back home. The next day, however, the headache was much worse, and he seemed to be having some memory loss. His dad took him back to the hospital, and a CT scan showed a mass and blood in his brain. His dad rode with him in the ambulance (lights and sirens blaring) to a larger regional hospital, while I frantically tried to get a flight there. I’ve never – ever – been more scared in my life. I was so worried that he might die before I ever even got there.  Meanwhile, his sister, Austin, was traveling back from a day at an amusement park. She passed the ambulance going the opposite direction! It was a crazy day.

The hospital decided that David was stable enough to let the blood clear, so they put him on pain meds and waited. It was about 2 weeks before they decided to do surgery – a couple of days after my 40th birthday. Seeing him come out of brain surgery was a pretty awesome birthday present. However, we soon found out that he had Glioblastoma Multiforme (GBM), one of the deadliest of malignant brain cancers.

I was a little daunted by the fact that Ted Kennedy and baseball player Tug McGraw had both been brought down by this same cancer, but David was a fighter. We were going to fight. I began researching along with most of the adults in David’s life, looking for answers. Things to prolong his life until they could find a cure. We all switched to an organic diet. We took him on long walks. We took him to what turned out to be four different hospitals and talked to several others from Alabama to New York to DC. We read everything we could get our hands on.

David seemed to be handling treatment remarkably well. After surgery he bounced back to almost normal after just a few days. He was plagued with memory issues, but for the most part, he could overcome them. His personality was almost the same as normal… he was a teenager coming into manhood, so it’s really hard to define “normal”, but he didn’t seem sick.

The doctors he met with were always amazed that he was doing as well as he was. His spirit was unflagging. But he was dying. They kept telling us this, but we all believed we could put it off. Buy more time until we could save him. He entered a clinical trial and for a time he was their “star” patient. His results were presented at a conference, and we thought, “we’ve got this!” And then, it spiraled out of control. The trial vaccine stopped working, and in a whirlwind, his body betrayed him. What was a shrinking tumor had spread into multiple tumor sites that further morphed into what the doctors called a “sugar coating” throughout his brain and spine. It was in too many places to fight. We still tried, but ultimately, cancer took David from us on May 11, 2012.

He was more concerned about others than himself up until the last moment he was able to express himself. I’m not sure you can really grasp the magnitude of that. He had just turned 18 in January, and he would not allow himself to be the center of attention. Other kids with cancer, his friends, his siblings – everyone was more important and more in need of help.

I read this great book, The Fault in Our Stars by John Green. In it he says that people only remember the best about people after they die. That all kids with cancer are made out to be angels, but it isn’t really true. I’m not trying to say that David was perfect. He could get angry and he didn’t always want to do what he was supposed to as it related to school or chores. But he never complained about having cancer or the treatments. Not once. He hated cancer, but he said he would rather it have happened to him than to his siblings.

We didn’t have this big online community for him because he didn’t want that. He wanted to be normal. But I wish now, we had been able to talk him into being a little more in the spotlight. The world would have loved him as much as we did.

Since he’s been gone, we’ve worked hard to try to further research in his honor. His friends and family have rallied in some really awesome ways and it is a movement that is just now gaining momentum. We are determined to make a difference, and we would love for you to join us. Hopefully, this blog will be a place where people who are standing up in the fight against brain cancer can find the information they need to make a difference.

Post log: In 2013, we started the Dragon Master Foundation in memory of David. This foundation will seek to use technology to innovate cancer research. You can learn more at http://www.dragonmasterfoundation.org.

2 thoughts on “About This Grey Matters

  1. Thank you for having this blog. I am a momma on her own mourning journey of having lost my 2 year old son to GBM March 2013 after a short 7 month battle. Through it all he was so brave and courageous. He had 2 craniotomies with the last being less the a week from our return from his make a wish trip and 6 days later the angels carried him off to heaven with both my husband and I cuddled with him one last time. These stories are truly touching and it’s nice to know I am not alone in this world of GBM….his page is Prayers for Cash on facebook. thank you again. Jen Friesen

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    1. Jen,
      I’m so sorry to hear about your son. Brain cancer can be a very isolating disease, and one of the things I’m hoping to accomplish with this blog is to show that this isn’t really a “rare” disease. There are many people affected and in the fight. Thank you for reaching out.

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