It’s Kind of a Big Deal

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: #13 Stacey Gravina

What I wish I knew before my son was diagnosed with brain cancer…

On July 27, 2011, after fifteen days, three hospitals, a CT scan, medically induced coma, intubation, an MRI, a spinal tap, a craniotomy… we received the diagnosis: Brain cancer ~ Gliomatosis Cerebri with Anaplastic characteristics. Gliomatosis Cerebri = a rare brain cancer that is highly aggressive and very resistant to treatment. These malignancies are not lumps like other tumors, but cancerous threads that spread very quickly and infiltrate deep into the surrounding brain tissue, or into multiple parts of the brain simultaneously, making them very difficult to remove with surgery or treat with radiation. Gliomatosis cerebri is extremely rare, with fewer than 100 cases diagnosed in the United States each year. Anaplastic = A term used to describe cancer cells that divide rapidly and have little or no resemblance to normal cells. And the prognosis = 6 months to a year.

One year and four days from that day, my beautiful, energetic, full of life, silly, fun, compassionate, loving 8-year-old little boy was gone. At that point all of that medical jargon really didn’t matter anymore. The 12 months of searching for a cure, trying everything that we came across that we thought might help him even a little bit, traveling across the world to Germany for one final attempt at a cure… none of that mattered.

On Tuesday, he should be turning 10 but instead on Tuesday, it will be 20 months since he went to heaven. Before he was diagnosed with brain cancer, I wish I had known he would never be 10… not even 9…

I wish I knew the value of every moment of every day and how we should have taken advantage of that before and after he was diagnosed. We did celebrate him and share him and our journey with the world… or at least as far as our world reached. But we also spent a ton of time trying to save him. That’s what a mother does, right? We are supposed to protect our children and make it all better… no matter what. I can’t imagine doing it any other way but at times wish we had. I might trade some of the time it took to get him to take his many pills, which included many natural supplements, with some cuddle time (although he took them like a champ). I might play a game instead of trying to get him to drink his “green drink” or eat his Budwig protocol concoction (not so much a champ with those). I might keep him in the comfort of his own home surrounded by his friends and family instead of flying him to Germany because I just couldn’t give up hope that there was a cure out there. Or maybe if given a do-over, I would do it all the exact same way because how can you not do everything you possibly can to try to save your baby? They say hindsight is 20/20 but I’m no clearer now on what happened, or why it did, than I was on July 27, 2011. In fact, I feel more lost than ever. I wish I knew that I would go in circles over things like this and that as soon as I was comfortable with the decisions we made, I would start all over again with questioning everything we did.

I wish I knew how others would deal with my grief. It is true that you find out a lot about people when you go through something like this. It is truly shocking who is there through it all and who disappears. In your greatest hour of need they just disappear… Some people that you never thought would be there, step up to the plate and some people that you expect to be there, just aren’t. We make them feel uncomfortable, they think we need to move on or they just don’t realize how much we still need the support. I am sure I’m guilty of this because I didn’t always know how it feels. And even now that I have faced the worst thing that could happen, I don’t always know what to say to other moms in my position. Through this you definitely see true colors… it is eye-opening and somewhat freeing. I wish I had known.

I wish I knew that people would avoid talking about him. That it would feel awkward to talk about him in front of some and that I would have a need to seek out those who would listen and equally enjoy hearing his name. I wish I knew that most people who will ask how you’re doing won’t really want the truth… especially if it’s more than six months out. I wish I knew I would have to work daily to keep his memory alive, to continue parenting him, to develop my new relationship with him and his with the rest of the world.

I wish I knew that I would start grieving the moment I was told he would die. I lived every day inside a dichotomy… The hope of finding a cure vs. knowing the statistics and that we were facing his death. There is nothing more confusing, nothing more exhausting, nothing more devastating, Decisions to be made every single day about his care, his quality of life, what’s important, what’s not, what will help, what won’t, when should I stop working, when should I stop trying so hard and just enjoy the days we have left. And that was just for Jacob… In the mix of all that you also have other children to consider and make choices for, not only in their every day lives but in how all of this affects them.

I wish I had known what to expect from this beast of a disease: how things would change so quickly after months of “stability”, how much time we had left when we decided to go to Germany, and what the end would look like, because that is what I was seeing after a week in Germany – the beginning of the end. I wish I knew how much having this awful disease eating at his brain would take from him… before it took his life.

I wish I knew how this experience of fighting for my son life’s and then losing him would change me forever. Brain cancer alone is not something you go through and come out of on the other side unchanged… Brain cancer resulting in the loss of your child means a part of you dies with them.

To this day, I wish I knew what was going on in that beautiful little mind of his. What did he know, what did he understand… especially in those last days and hours. I wish I knew… I wish he could tell me.

“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” ― Rose Kennedy