Blindsided

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Here’s the thing about grief, it doesn’t care what you’re trying to do. You can be walking along, living your life, pretending things are nearly as good as they used to be, when it just comes around a corner and blindsides you. You think you can manage and then, wham! It brings you to your knees.

Today, I flew to Pittsburgh for meetings tomorrow with doctors who are sharing their data. I’m excited about it because it gives me an inside look at how the CBTTC member hospitals collect and send in their data. There’s just one little problem. It’s also the hospital where we were told the clinical trial wasn’t working for David. It was the beginning of the end, and we all knew it.

I thought it would be ok. After all, when we left Pittsburgh, David felt great. We were still in that crazy world where they tell you your child is dying but he looked fine, felt fine. And as long as you have a treatment plan, you feel like you might beat the odds. And then comes the smack down.

In many ways, we are so appreciative of Children’s Hospital of Pittsburgh. We’ve told them that – at meetings that were far from the building I’m going to tomorrow. I know that we had more quality time with David because of the work they did. But somehow, being back on the streets that we traveled with him, it felt like he should still be here. I mean, every day, it feels like he should still be here, but somehow it was just so much more overwhelming being back here.

It made me think of the many friends I have who spend their days in hospitals where their children died. They get up each day with the resolve that they will make the day a little brighter for a family traveling the path they know too well.

When I think of that, it makes my days seem easy. When I think of that, I know I can face tomorrow with a smile for those who have dedicated their lives to trying to save our children. The truth is, none of us want to be in that room tomorrow. None of us want to be dealing with the reality of childhood cancer, but we lift each other up and do what we need to do to try and save lives. Until there are cures for all.

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!

#MomentsofMagic

Dragon Master Foundation, Uncategorized

Cancer can be one of life’s most difficult challenges. It has brought more pain to my life than I care to remember, but it has also given me great awareness of the little moments in life. I think it teaches a lot of people about gratitude, frequently in ways we wouldn’t imagine. I know trying to imagine what it is like to live with a cancer diagnosis can be overwhelming, especially if you think about it being your child or other loved one. It’s sad and scary, and well, I don’t want to think about it either. But I do want to bring attention to the need for research. I want you to think about ways we can cure cancer. I want you to think about it all the time – like those of us who have been faced with it in our daily lives.

But how can we think about it, and act on it, without being overwhelmed by it? After talking with a lot of folks, I think I found a way to shed some positive light on the issue. We’re going to start a sort of gratitude journal, where we can focus on those little moments that are good, that are special because they are so normal. We want you to see how grateful cancer patients and their families are for those little things.

So here’s what I need from you. I need you to start sharing those moments with me, so that Dragon Master Foundation can share them with the world. We’re going to call them #MomentsofMagic . They can be anything you want – as long as it was a moment that was special to you as a cancer warrior, caregiver, loved one or friend. We’d love to share pictures with the stories as well, so send whatever you would like to share to amanda.haddock (at)dragonmasterfoundation.org.

Together, we can focus on the positive. As Dumbledore would say, “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

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Brain Cancer Awareness Month Needs You!

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DavidWearGray

Brain Cancer Awareness Month is, at best, bittersweet. A time for us to bring awareness to a disease that takes a devastating toll on families. It is a time for us to celebrate the victories of those who are living with this disease and at time for us to remember those who were taken by it.

I will be posting a lot this month about the brain cancer warriors who have crossed my path, and I will try to bring awareness to the disease and to events happening around the country. Everyone can wear grey and talk about brain cancer awareness month, but hopefully, by posting this list, you may also be able to find an event near you to attend. Please also consider changing your social media images to a grey awareness picture. If you Tweet, I’d love to connect with you on Twitter. Tweet me at @AmandaHaddock and you can use hashtags #btam (for brain tumor awareness month) and #BrainTumorThursday – a day each week throughout the year that we raise awareness.

If you know of an event that isn’t on the list, please message me so I can add it. I’m pretty sure I’ll be adding events all month, so please bookmark this list and check back!

Anywhere
May 8 – Go Grey for a Day – Make sure you wear grey on this day and tell people that you are doing it for brain tumor/cancer awareness

May 15 – Webinar to learn about the latest in collaborative brain cancer research – http://bit.ly/1dLwolc

Tune in to Catch The Brain Wave each Friday from 6-7pm EST on WESS 90.3 FM LIVE in Pennsylvania!! Listen on the web here: http://tunein.com/radio/WESS-903-s28605/

Look for ways you can contribute to your favorite organizations every day. There are too many organizations to list all the possibilities, but here are some ways you could help Dragon Master Foundation:
– Following us on FacebookTwitter, or Pinterest
– Choosing us when you shop on AmazonSmile
– Recycling for us with our free shipping program
– Register your Dillons card using our #11547 – a lot of grocery stores have this option. If you don’t see your favorite foundation listed, tell them, so they can get signed up!
– Do your intent shopping with iGive

Also, check your favorite foundation’s website for other promotions that may be happening. For example, Dragon Master Foundation has the opportunity to win a unique piece of dragon art created just for the foundation! Check it out here.

Ok, now for a state by state listing of activities you can participate in:

California
May 2 – Bay Area Brain Tumor Walk – http://events.braintumor.org/bay-area-brain-tumor-walk/
May 3 – Los Angeles Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1980&pg=entry#.VUMDZ2TBzGc
May 8 – Striking out Pediatric Brain Cancer with the Los Angeles Angels – http://www.eventbrite.com/e/striking-out-pediatric-brain-cancer-with-the-angels-maxlove-project-and-the-mckenna-claire-tickets-16325952363
May 16 – Come Fly With Me Party with a Purpose – http://mckennaclairefoundation.org/events/come-fly-with-me-5th-annual-party-with-a-purpose-051615/
May 30 – San Diego Brain Tumor Walk – http://events.braintumor.org/san-diego-brain-tumor-walk/

Connecticut
Sharing Hope Walk the Walk Talk the Talk – http://hope.abta.org/site/TR?fr_id=3330&pg=entry

Florida
May 2 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-fl/
May 9 – Prohibition Gala – http://btagala.com/

Georgia
May 5 – 11 Annual JSL Charity Classic – http://www.jslcharityclassic.com/
May 31 – Bowl for the Bull – http://www.gofundme.com/bowlforthebull

Illinois
May 9 – 17th Annual Vernon Hills Brain Tumor Walk – http://www.abta.org/get-involved/events/17th-annual-vernon-hills.html

May 13 – Dine out at Kouri’s in Pekin – https://www.facebook.com/events/840909205993896/
May 15 – 3rd Annual Act for Alan Fundraiser – http://www.abta.org/get-involved/events/3rd-annual-act-for-alan.html
May 17 – Join the Voices 5K in Chicago – http://www.voicesinmotion.org/site/TR?fr_id=1291&pg=entry

May 30 – Cocktails for a Cause – https://myab.co/events/EC/

Iowa
May 1-3 – Lambda Chi Alpha Teeter Totter – https://www.indiegogo.com/projects/lambda-chi-alpha-teeter-totter-a-thon-for-abta
May 9 – Race for Hope Des Moines – http://www.raceforhopedsm.org/

Kansas
May 3 – Avengers Age of Ultron Movie Screening – http://www.dragonmasterfoundation.org/events/

Massachusetts
May 2 – Brain Tumor Alliance 5k – http://events.braintumoralliance.org/site/TR?fr_id=1160&pg=entry
May 17 – Boston Brain Tumor Ride – http://events.braintumor.org/boston-brain-tumor-ride/

Michigan
May 2 – BT5K – http://hope.abta.org/site/TR?fr_id=3183&pg=entry

Minnesota
May 17 – MN Brain Tumor 5k – http://mnbraintumor5k.com/

Mississippi
May 2 – North Mississippi Kilt Walk & Fun Run – http://www.kiltedforbraintumors.com/

Nevada
May 16 – Desert Gray Matters – http://wizathon.com/walktoendbraintumors-nv/

New Jersey
May 30 – National Walk to End Brain Tumors – http://www.wizathon.com/walktoendbraintumors-nj

New York
May 17 – 11th Annual Team Billy Ride & Walk for Research – http://www.braintumorcommunity.org/site/PageServer?pagename=BTR_SS_Homepage

North Carolina
May 3 – NC Triangle Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1990&pg=entry#.VUMC6mTBzGc

North Dakota
May 24 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-nd/

Ohio

May 18 & 19 – Joggin for the Noggin Benefit Dinner – https://www.facebook.com/events/350866698444089/

Pennsylvania

May 1 – Brews for Brains – https://www.facebook.com/events/1377664142561766/

May 2 – Avengers Age of Ultron Movie Screening – https://www.eventbrite.com/e/the-avengers-age-of-ultron-2015-3d-private-movie-screening-at-king-of-prussia-imax-and-stadium-16-tickets-15957153275

May 24 – BRAINFEST – https://secure2.convio.net/abta/site/Donation2;jsessionid=0C748EA3B0B8BED03111BA4D4F56B5A0.app274b?df_id=6720&6720.donation=landing

Utah
May 25 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-utah/

Virginia
May 29 – 3rd Annual Lambda Chi Alumni Clay’s Day – http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=515

Washington DC
May 3 – Race for Hope Washington, DC – http://www.braintumorcommunity.org/site/TR?fr_id=2360&pg=entry

Washington
May 3 – Seattle Brain Cancer Walk – http://www.braincancerwalk.org/
May 16 – BT5K – http://hope.abta.org/site/TR?fr_id=3182&pg=entry

May 30 – Bellingham Brain Cancer Walk – http://braincancerwalk.org/bellingham

It is my hope that these events will inspire you to get involved in awareness events throughout the year – not just in May.

A Significant First

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Wilson's happy cookie

You make note of many firsts. Baby’s first steps. First day of school. First job. First anniversary. They are almost always happy occasions. But today I am trying to find a way to  honor a first that is not happy. It’s heartbreaking and yet it means so much that I can not let it go by without acknowledgement.

Yesterday, I found out about a brain cancer warrior that has moved on from this world. His family and friends will have to learn to live without his sweet presence every day. It is a first for me because they have asked that memorial donations be made to Dragon Master Foundation. This is the first time that I’m aware of this happening, and I don’t know what to say. How do you thank someone for such a selfless gift? They’ve wrapped up all their love and lifted it as an offering in honor of Wilson. They believe in us enough to put it out there to the world that they want his life honored through contributions to an effort to save others.

This is such a significant thing to me. I’m humbled. I’m in tears. And I’m so very determined to put an end to cancer. For Wilson. For David. For all the warriors still in this fight. We won’t let you down.

For Auld Lang Syne

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I have an app on my phone called “Time Hop”. It goes back in time to year’s past and pulls out photos from your phone or Facebook to show you a little of your personal history. Today, one of the photos it showed me was of my Facebook statuses from 2010. What struck me was how happy they all were. How thankful. How EARLY in the year. You see, all of the statuses in the picture were from the first eight months of the year. David was diagnosed with cancer in month 9.

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In hindsight, I always wonder if I was thankful enough before cancer entered our world. If I appreciated my kids enough. If I knew how blessed we were in spite of our hardships. Then today I saw this recap of my year before cancer. There’s no doubt that I knew what my blessings were. It wasn’t all sunshine and rainbows, but I reveled in them when they appeared.

What really struck me, though, was how blissfully unaware we were. We had “normal” problems. The kind that you can pull yourself up by your bootstraps and get through. And then, David got an excruciating headache that led to three weeks in ICU and brain surgery. All the while, we believed that we would just pull together as a family and get through it.

But cancer isn’t always like that. Yes, being positive and fighting hard is important. I believe that it can make a huge difference in treatment and survival, but it is no guarantee. Cancer sneaks in unexpectedly and steals away your normal. To me, that is the most alarming thing. There was no warning.

In some ways life is just like that. You never know what’s around that next curve. The end of the year seems like a good time to look back over those curves and smile where you can, and cry when you must. More importantly, it’s time to look ahead to see what you can do to smooth the curves in the coming year, both for yourself and for those around you.

For me, looking ahead means finding innovative ways to fight cancer. I know David is looking down on us urging us forward. I know that he would see each life as precious and worthy of the fight. As we enter 2015, I hope that you will join us to make a positive change in the world of cancer research.

People You Need To Meet #39: Andie McConnell

52 People To Meet Posts

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What I wish I knew before my friends’ son got brain cancer… This may seem a strange twist on the theme of these blog posts but I wish I knew my friends before their son got brain cancer. When I met them, their son had been in remission for a couple of years, but the pain over what they experienced was still raw. As I got to know the couple, she spoke of the experience of facing cancer with a child and the disappointment in the friends who disappeared during this difficult time. So in addition to the fears and grief that come with a child facing cancer, she spoke of the loneliness and the struggles as a family. She talked of how people they believed would stick by their sides did not, and that some people they didn’t expect to help, did.

Her words really resonated with me, as did her talk of the pain of watching a child go through cancer treatment. Hearing their struggles made me wish that I had known them and had been able to be there for them during their journey because I knew I would have been one of the ones who stayed around to help. I thought of ways I would’ve helped to lighten the load on them, how I would have been there to listen, to help with meals, their house and anything else they couldn’t quite find the time to do. Years later, I met a family with a child with a new cancer diagnosis, and my friend’s words about the loneliness of pediatric cancer rang in my ears.

I decided to make an effort to help them through fundraising and emotional support. Looking back , in some ways I realize I did it to make up for not knowing my friends before their child got cancer. As this family’s child reached the end of treatment, I realized there just might be a real need for support of other families facing pediatric cancer. I surveyed families and found there certainly was a need. I brainstormed how best to provide this support, and it evolved into what is now a nonprofit based in Fredericksburg, VA that focuses on the needs of the parents rather than the child. We provide meals, house cleaning, lawn care, hair cuts, gas cards, a financial relief fund and emotional support to the parents in order to relieve some of their stress and to provide them with more time to focus on their family. I wasn’t able to support those friends during such a difficult time because I didn’t know them, but now my organization provides support to families in parts of VA and MD with similar struggles. We fill the void of the friends who, for whatever reason, are unable to help and for the friends they have yet to meet who will wish they had been there in such a difficult time.

Editor’s note: You can learn more about Andrea’s nonprofit, the Fairy Godmother Project, by checking out her website: http://www.fairygodmotherproject.org/

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: #22 Richard Haddock

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David Pearson is my stepson, who I immediately liked when we first met. He was a very odd kid and loved to be different. Whenever someone told him that he was weird, he would simply smile and say “thank you”. David never cared what anyone thought about him and was always befriending the friendless. He would almost seek out the ones who looked wounded, or in need of a smile, or a joke, or to say something totally unexpected. David treated everyone like his best friend, and they all loved him for it.

David was a stranger to no one, and he is an amazing, wonderful soul. David Pearson was diagnosed with brain cancer, at only 16. This is what I wish I knew before then. Growing up, my parents, especially my mom, taught me that I could be anything, do anything. When David was diagnosed with a GBM (glioblastoma multiforme), my thought was that everything was solvable, that any issue could be analyzed, understood, and fixed, but I was wrong. There is currently no cure for GBM, and the standard of care hasn’t changed much in 30 years.

When we went to the hospital to help David and figure out what to do, we saw that there were lots of children with cancer. One that particularly stood out was a young man named Justin, who had leukemia. His mom, Kathleen was a nurse, and she seemed to know her way around the hospital. She was very kind to us and immediately took an interest in David. Justin and David became hospital buddies and in the short time they were together, became friends. I assumed that Justin would be fine, and that eventually he would be a healthy young man, able to live his life. I naively wished that David had something “curable” like Leukemia.

We weren’t sure what to do, since David was living in Virginia, and we lived in Kansas, but our friends, Jamie and Jennifer offered to let us stay in their house in Virginia while David was going through treatments. We essentially moved into their home, even bringing our dog, Cooper, to stay with them. They were awesome hosts and we could not have done it without them. They continue to help us as well as others.

We weren’t sure what to do with our cats, still in Kansas, and how to look after our home, but our neighbors, Jay and Michelle quickly offered to help with feeding the cats and watching over the house. It was one more thing that just got handled and we didn’t have to worry about. As we worked to help David with his health, we found that there were times that we simply could not get everything done, and that’s when Jay and Teresa stepped in and helped with all sorts of projects. There are so many kids and parents who did little things to help us along the way! Please forgive me for not naming everyone here.

A few months after David’s diagnosis, we got word that Justin had lost his battle with leukemia, and we were stunned. I thought that Justin would be okay,  but the battle had just become too much, and he lost the fight. We went to Justin’s visitation and waited for two hours to pay our respects. When we finally made it to Kathleen, she asked about David. I was heartbroken and amidst her pain, Kathleen was asking about David. Kathleen has been an amazing friend, who continues to fight for cancer research and is a treasured friend.

As we continued working to find a cure for David, we came into contact with many amazing nurses, doctors, researchers and others who are doing their best to make things better for families going through this. Dr. Hwang and Dr. Packer of Children’s Hospital in DC were very vigilant to do everything they could to help us. They were also instrumental in finding a clinical trial for David at Children’s Hospital of Pittsburgh.

Dr. Jakacki treated David in Pittsburgh with a new immunology study that helped him for 10 months until the cancer got smarter and the cancer began to grow. All through our journey, we had the help from many friends, who did things to help that we could never repay. Whatever we needed, friends, and people we didn’t know were our friends yet, helped us in ways that were simply amazing.

David lost his battle at the young age of 18. I think of David every day, and think of what might have been. I miss his sense of humor, his amazing personality, his love of everyone, and his amazing faith. On the day of David’s funeral, a lot of our friends came to pay their respects. I’ve never been one who goes to funerals because they’re uncomfortable. Many people came to show their love of David, including a bunch of his friends from high school. They all wore Hawaiian shirts because David always liked to wear them to be different and stand out.

I was not prepared to see my friends David and Loren show up, as well as Dr. Hwang among many others. My brother, David, also made a point to come and be there for us. It was a very humbling day, and changed my view of funerals. When David’s battle started, I thought that we would be able to fix him, to make the cancer go away. My parents taught me that anything was possible, and even though I’d had various setbacks in my life, I always came through it.

David’s journey, though, was different. Here was this battle with cancer that David lost, but is that it? Is that where it stops? Amanda and I decided that even though David’s battle was over here on earth, that there were many more children and adults who are fighting this battle every day. Many were winning, but too many are losing. After a year or so of thinking about what to do, and trying to “recover” from such a loss, we made a decision to help. The battle for David may be lost, but the war against cancer is certainly not over.

We formed the Dragon Master Foundation in 2013 to bring big data technology to medical research. When we started, we had no idea how many people would offer to help, even though they had no family members who had ever taken on the cancer battle. We’ve been very humbled by all the help from many different people, including Angie, Miles, Kimberly, Roger, David, Linda, Jolee and many others.

I often ask myself what it means to be a Christian, and I think that our friends and family have shown me in many ways what that means. As we struggled with what to do throughout this ordeal, and ultimately our loss, Amanda and I would pray together, and we would feel a sense of calm that I cannot explain nor will I try. Things just happened for us that we can’t explain, I think, because we were connected to something greater than ourselves.

Some days I see David’s picture and just smile. He always made me laugh, and I think of what a privilege it was to have known him and be part of his journey. The picture of David with this article is just a few weeks before his diagnosis. You can see that David was a handsome young man, full of life and laughter and love and promise.

People have told me that it gets easier over time, but it really doesn’t. It makes me sad to think of what might have been. That full life that David had envisioned is gone, and his absence is felt every day. It doesn’t get easier, you just learn to live with it.

Our friends did amazing stuff for us. From all over the country, we have friends who have done so much for us we could never repay them. Even now, we have new friends who have come into our life after David died, and really want to help us with our foundation.

Some days I wonder why they help us so much, but I’m trying to be gracious and just say thank you without question. It hasn’t been easy, but our friends have made it easier for us. I wish I’d known how to be the kind of friend that all of the people who helped us through this journey have been. They figured out what we needed, and then just did it – they didn’t say to call if we needed anything. Friends show up when you’re in need – especially at the funerals of loved ones. I wish I’d known how to be a better friend.

We’re all on a journey that we don’t know the script to, and some days we’re just trying to get through the day. Be gentle, be kind and take care of each other. Life isn’t easy, but with the help of friends and family it’s well worth the ride. Thank you is not enough – but thank you to all the friends who have helped us and continue to help in this journey.

Editor’s note: You can keep track of Dragon Master Foundation at the website: http://www.dragonmasterfoundation.org , on the Facebook page, or on Twitter @DragonMasterFdn .

Cancer is a Completely Solvable Problem

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This is a completely shameless photo of our dog, Cooper. Because everyone reads stuff on the internet that has a cute animal pic.

Do we have your attention now? (This is a completely shameless photo of our dog, Cooper, because everyone reads stuff on the internet that has a cute animal pic.)

Did that headline get your attention? It certainly got my attention when a researcher said those words to me a few days ago. As a lot of you know, we have formed Dragon Master Foundation to build a database that will make cancer research easier, faster, and more effective.

As part of our research into what exists already, we identified a large public resource called canSAR which aims to support cancer research and drug discovery by bringing large volumes of different data together. I have spoken with the leader of the canSAR project, Bissan Al-Lazikani, who agreed with the importance of building a global clinical database to support clinicians and have more immediate return for the patients in the clinic. As canSAR is an open public resource, there are ample opportunities for future links and collaborations with Dragon Master Foundation which we will aim to pursue.

We are still in the very early stages of development, so some would say I shouldn’t be sharing this information with you. I believe, however, that we need all of you to understand what is lacking in the world of research today so that you can help fight for these tools that the researchers need.

There are a lot of really good causes out there. I have friends who are committed to helping the homeless, rescuing animals, or fighting for research dollars for a variety of diseases. I’m asking all of you to put those goals aside for one moment. What if you could really do something that would cure cancer? Not one type of cancer, or one group of patients. But cancer. Period. I think that this database can do that. And there are some pretty respectable researchers who also believe that.

So here’s what I need you to do. Tell people about the Dragon Master Foundation. Share our Facebook page (https://www.facebook.com/DragonMasterFoundation). Follow us on Twitter (https://twitter.com/DragonMasterFdn). Share our vision.

If you are in the medical profession, give us a quote we can use about how this type of database is important.

If you are a patient or caregiver who experienced a “well-oiled” communication machine during treatment, or conversely, a lack of communication between hospitals, please tell us what you witnessed. And please share our vision with any of the doctors on your team.

If you can give, please consider donating toward our database. It is a massive need, and we will need massive funding. But wouldn’t you like to have some small part in bringing about a cure for cancer?

At this point, we are run completely by dedicated volunteers. However, the time is fast approaching when we will need to bring on a project coordinator who can take our project to the next level. Foundation funding is key to making this happen.

Lastly, I’d like to thank all of you who participate in the blog, social media, or other efforts that support Dragon Master Foundation. This is a wild, amazing ride for me and I want all of you to come along. Dr. Anna Barker told me, “Changing the world is hard, but it can be done.” Let’s do this!