Brain Cancer Action Month 2016

Dragon Master Foundation, Uncategorized

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I had big plans to be super organized heading into May this year, but for various reasons, it just didn’t happen. So here we are, on May 4th (Star Wars Day!), and I’m just now making a post about all the ways you can get involved this month. There was a big event on May 1st in DC, Race for Hope, so I’m sorry for not getting word out to all of you in time to participate in that. It was only the first of many events this month, though, so without further delay, here are some ways you can get involved:

Wear gray. It’s the most simple way to show your support. Grey is a pretty bland color, though, so to really get people’s attention, you might need to draw some attention to yourself. Maybe some crazy hair, or a Hawaiian shirt on top of your grey… something te get people wondering what’s going on with you. 😉 You can even take a gray selfie and enter to win a prize!

Change your profile picture. Make your profile image go gray this month. Need some inspiration? Check out our Pinterest board.

Support on online fundraiser. Maybe you’re busy. We get that. So skip coffee or drinks for one day and donate that money to an online fundraiser. You can find some worthy places to donate at these links:

Sponsor a runner in California here , here , here or here

Sponsor Runners in Iowa

Sponsor a runner in Kansas here or here

Sponsor a runner in Pennsylvania here

Sponsor a runner in Virginia

Go to an event! This one is a little bit trickier because the events are in specific geographic locations, but if you can make it to one, please do! The folks that organize these events put a lot of hard work into them, and it physical events can be a real boost for survivors. I’m listing the ones I could find by date and then location.

May 14th

4th Annual Race for Hope DSM – Des Moines, IA

San Diego Brain Tumor Walk – The Waterfront Park, San Diego, CA –

May 15th

Comedy Night – Hollywood, CA

12th Annual Team Billy Ride & Walk for Research – Saratoga Springs, NY

Boston Brain Tumor Ride – Waltham, MA

May 21st

CureFest 2016 – Humble, TX

Bay Area Brain Tumor Walk  – Crissy Field, San Francisco, CA

Charleston Brain Tumor Walk – Mount Pleasant, SC

I am sure I’ve missed a lot of events for the month due to lack of research time. Do you have an event or activity to share? Please add it in the comments!

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!

52 People You Need to Meet: #37 Sue Jarvis

52 People To Meet Posts

Sue & Megan Jarvis

Our daughter, Megan, had suffered from headaches for years which doctors said were migraines. However, on December 1, 2004, an MRI revealed our worst nightmare. We got the news no parent wants to hear – “your daughter has a brain tumor.” Our lives would be changed forever that day.

A biopsy revealed a grade two Oligoastrocytoma.   After three surgeries and years of chemo, fast-forward to August 2009, her tumor had now progressed to a grade four Glioblastoma.   This time treatment would be radiation and more chemo. Fast-forward to February 2012, more words no parent wants to hear – “Megan’s tumor is growing, and we have run out of options. “ Basically, nothing more we can do for your daughter, and then I asked the dreaded question – how much time does she have, and the dreaded answer – six months. So we took that special trip, had fun with family and friends, ate good food and we didn’t focus on what was going to happen tomorrow.

On August 10, 2012, Megan passed away from this terrible disease. It was a long journey of so many ups and downs that Megan handled with such grace and dignity – never complaining. She had a beautiful spirit that shined through in how to live day-by-day with the challenges of a terminal illness.

Six months after Megan’s death, I found the following paper she wrote for an English class at Old Dominion University. The paper was a hidden gift to us, as Megan was very private about her illness. It gives such an insight as to what life is like with a brain tumor. Megan just wanted to live a normal life like any young adult.

“English 101
Megan Jarvis
March 6, 2008

I believe that life is something that should never be taken for granted. In my first year at college I have met many people who do this every single day, not thinking anything will happen to them; that they are untouchable. I, like any young healthy person, thought that I would be fine forever, but realized that disease does not discriminate. It can affect anyone at any time, no matter how perfect they think their life is.

When I was sixteen years old I found out I had a brain tumor. I had three major surgeries, each setting me back physically and mentally. I had to deal with pain, speech therapy, seizures, chemotherapy and radiation. It has been hard, but it has helped me understand how precious every little thing in one’s life is. Since the surgeries it has been hard for me to remember my friend’s name, drink a cup of coffee, drive a car, swim, or play my piano. It is even more difficult to take a piece of paper and write my thoughts into words. Another thing that is different is all of the medication I am on. Before this I never took any medicine, and now I can’t go a day without it. It is a lot to remember and also come many side effects. The worst is when I become toxic, which has happened many times. This hurts me the most by having to miss important things, like school. I had to be home-schooled part of my senior year. I have lost almost all of my short-term memory and have trouble finding words. This can be very frustrating.

With things being the way they are, it is distressing for me to see people act in ways that are so perilous and think nothing of it. They won’t wear their seatbelt in their car; they don’t need it. They start smoking cigarettes; it makes them look cool. Lying out in the sun all day is smart and makes them look better. And after all of these things, they believe they are so healthy that they have no need for medical insurance. Then they start with their complaints – I’m not getting paid enough, I don’t like my car, I’m not tall enough, my clothes aren’t pretty enough. I want to tell them to stop wasting their time complaining about these petty things that don’t mean anything. Start appreciating things that do matter. Volunteering in a hospital I have met many elderly people with terminal diseases. When talking to them, almost all say that their sickness is due to decisions they made when they were young.

I met a person at school and when I told him about my situation, he was surprised at the way I was living my life. He said with something like this I needed to carpe diem, or “seize the day”. That was the motto by which he lived. And I did agree with him. Eat, drink, and be merry is something everyone should do; live a happy life. But don’t lose concern for the future. I told him my saying is memento mori, “remember that you are mortal”. Life is something that’s value should not be underestimated.

I know what I have experienced is more than significant. It has completely changed my life. Everything now is opposite of what I had planned it to be. It did have some good with it though. I was able to meet so many great people, people who have gone through much more than me. It showed me that I have more friends than I ever thought I did. It showed me how kind people are, but unfortunately how unkind others can be.

I am strong inside, not fearful of my future. I don’t look ahead, just the present. I don’t even know what I am doing tomorrow. I was never scared of what was going to happen to me, and I was the one holding up my family through the ordeal. I don’t know what I want for the immediate future. I think my goal is to just get through another day and see what happens from there.

My life is nowhere close to where it was before any of this happened, but I wouldn’t change anything.”

Megan had wisdom beyond her years like so many children and young adults who have to deal with cancer. Their lives remind us that it’s not the number of years we are given, but how we use them.

The question of what I wish I knew before Megan was diagnosed. I wish this were all a bad dream! I wish I wasn’t in the grieving parent club that I didn’t ask to join. Someone I knew who had also passed away from a brain tumor last words still stay etched in my mind.   Confront reality, confront the end.

I thought I knew what life would be like after Megan was gone. I thought I would be prepared. But no one can be prepared for death, let alone the death of their own child. I knew how this story would end.  After all, you don’t read of too many people living a long, full-life with a GBM. Sometimes statistics don’t lie. But that’s not to say we ever gave up hope. I grieved for many years being her mother and primary caregiver and watching her go through so much pain and suffering. That grief journey is over and now I’m on a new journey. Learning to live with the loneliness and emptiness. Learning to live with the reality that my hopes, dreams and future for Megan – gone. All the thoughts of what could have been, should have been, would have been – gone. From the time Megan was little, she always wanted to be a doctor – ironically, a Neurosurgeon.

So for my future – I will strive to live my life with Megan’s positive attitude, courage, perseverance, compassion, faith and living for today like there may be no tomorrow on this earth. I do believe there is hope that each day can get better – it’s a minute-by-minute process that may take me a lifetime to achieve.

Megan, may the wind be always at your back, and may the sun shine warm upon your face. And until we meet again, may God hold you in the palm of his hand.

Love Mom