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.

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!

Letting Go

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I’ve put off writing this all day because somehow committing the words to page makes it more real. Late last night, our darling young man was called home to Jesus.

In the last few days, David had been less and less with us, slowly withdrawing into the world beyond this one. I thought he would just drift away from us without a real goodbye, and I was trying to come to grips with that. I should have known that David wouldn’t go out “quietly”.

Yesterday morning, after a few days of little, if any response, David started communicating with us again. He couldn’t really talk, but he could make sounds, and because his personality was always larger than life, we could easily identify a lot of what he was trying to tell us. He had a moment with each of his visitors yesterday, which included my parents, Austin, and his step sister.

His final moments were spent in the company of all four of his parents, surrounded by words of love. We had Celtic Women playing softly in the background in an effort to make him happy and relaxed.

There’s a lot I’d still like to share with the world about David. His earthly life may be over but his message still needs to be told. I’m afraid I’m a little too upset right now to be able to even attempt to do him justice, so I’m not going to try.

There have been many sweet notes posted on Facebook today, including one from Austin that spoke to their sweet relationship. I ask that prayers continue for her and his step siblings as they grapple with the loss of their brother. We know he is in a better place, but it is so sad to be the ones left behind.

For those of you who would like the details, the viewing will be Monday, May 14th from 5-8 pm. The funeral service will be outside at 3pm on Tuesday, May 15th at Laurel Hill Funeral Home.

In lieu of flowers, memorial donations can be made to:
Accelerate Brain Cancer Cure

Please note that it is in memory of David Pearson. It is Brain Cancer Awareness Month, and I think there is no better way to get the word out than by celebrating the life of David.

No Easy Days

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Today was a difficult day, in a line of difficult days. Cancer tends to make life much harder than it should be.

To go into details would be hurtful to those I love, so let me just relate the lessons learned – or that should be learned:

1. People speak far more with their actions than they do their words.

2. One (or even a few) hurtful interactions should not erase thousands of truly loving ones.

3. You need all the love you can get in this world, but not if it comes with conditions. If someone really loves you, there are no strings.

4. If you really love someone, you will get joy from being with them in the good times. And if you abandon them in the rough times, it wasn’t really love.

5. You can feel more love from a person you have never met (that would be you, Jeanne & Alex) than from people who have known you half your life.

Be kind. And if you can’t be kind, be quiet. If you have to vent, do it to a person who can keep their mouth shut.

My heart hurts today for a number of reasons. Some can’t be fixed by any human, but some could. It’s just that those people chose to make the situation worse and not better.