It’s Kind of a Big Deal

Dragon Master Foundation
Wish I knew who to credit for this pic because it is awesome.

Wish I knew who to credit for this pic because it is awesome.

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like  being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

In the end

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I am torn about how to write this, but I feel like I need to shed some light on this beast that is brain cancer and the horrific way it steals our loved ones.

Let me begin by saying that each journey is different and what I am going to share is not from any one particular person, but more a conglomeration of things that a person with brain cancer may suffer through. I want to share it not for the shock value but because I so often hear brain cancer compared to other cancers, and it is so unlike other cancers.

First the simple stuff. Brain cancer patients can lose the function of nearly any part of their body. They may lose bowel and bladder control, the ability to walk, the ability to see and hear. It is terrifying for them to slowly watch their level of function decrease – never knowing what might happen next.

They are usually told at the beginning that brain cancer doesn’t spread to other parts of your body. That isn’t entirely true because it can spread to the spine. Whether or not it spreads to the spine, you could still lose the ability to walk.

Most brain cancer patients suffer through seizures of varying intensity and length. This could be something that happens occasionally or constantly.

Then things get more complex. Where the tumor is growing can make a major difference on how the patient experiences life. Some become irrationally angry. They may not recognize loved ones – to the point of becoming violent toward those loved ones, even if they have been the daily care provider. They can be easily confused, questioning the most basic facts and reality.

When the tumor grows, it frequently causes hydrocephalus, which can be the cause of death. It can also press on the part of their brain that makes them throw up, so that they do so constantly and uncontrollably.

All of the things I’ve talked about here are strictly related to brain cancer itself. Most cancers are treated with some combination of chemo, radiation, and/or surgery, so I didn’t include the various and plentiful side effects and complications from those symptoms.

As I write this, I am mourning for the loss of a brain cancer warrior who was a son, a husband, and a father. He was in the prime of his life with young children who lived with the very harsh reality of brain cancer. As I write this I am praying for others I haven’t dared to count – among them many sweet, innocent children. I am not a doctor or a scientist. I can’t do their jobs, but I can do something to make their lives easier.

We have formed the Dragon Master Foundation to make research faster and more efficient. We are going to need a lot of help, but it can be done. We are eager to partner with other non-profits, hospitals and research institutions that are passionate about finding a cure.

If you are reading this, you CAN make a difference in the fight against brain cancer. Share this post. Like Dragon master Foundation on Facebook. Share it with your friends. Each voice makes the sound louder. Each person who knows about this grim reality puts us one us one step closer to the cure.