So Much For “Catching It Early”

David's Journey, Lessons Learned
David & Rachel

Does this look like a kid waiting on brain surgery?

I found a Facebook post today from before I started this blog. You see, I didn’t know the path that we were headed down. I didn’t know that I would be trying to help others navigate the ugly world of brain cancer. I thought my son had a brain tumor that would require some potentially risky surgery, but that we would get it out and be on our merry way. I didn’t know a lot of things – then.

Fast forward to today, when I know more than I ever wanted to about brain cancer and how devastating it is – even when it is small and they catch it early. You see, this disease isn’t like most cancers. Catching it early doesn’t dramatically improve your chance of survival. It being small doesn’t make it any less aggressive.

Looking back at this post, I am struck by how naive I was. I know that the rest of the world is also that naive. I know that you won’t really understand unless, God forbid, it happens to you or someone you love. And that’s the real kicker. It COULD happen to you or someone you love. We have no idea why David got brain cancer. Most brain cancers can not be traced to a specific cause. He didn’t smoke or drink or even use a cell phone much. He was a healthy, happy 16 year old who didn’t deserve this. No one does.

This post is full of optimism, and though we may not have David with us anymore, we still have his sense of optimism. We know we are on the right track. We know we will help put an end to this disease, and most likely, many others. I wish with all of my heart that it had happened in time to save David, but I move forward everyday with a sense of urgency that it today it could be someone else’s “David”. One day, a mother will get to keep her innocence because of the work you are helping us do.

Here’s the post from September 3, 2010:

David was having really bad headaches so his dad took him to the ER – twice. Second time they did a CT scan and saw something. Turns out he had a small growth with some bleeding. The bleeding was irritating the area & giving him a headache. (We had originally thought the bleeding was an issue, but it seems to have stopped fairly quickly on it’s own.) So the headaches alerted us to a problem (the growth) that might have gone unchecked for a while otherwise.

The growth is a concern because it shouldn’t be there, but as growths go, it seems “good”. It’s small and compact, like a ball – not “reaching out” like an open hand.

Because it is in his head, they want to be very careful how they approach it. Since everything has stabilized so much (a very good thing) they are waiting for the dust to settle (or in this case for the blood that is in the wrong place to be reabsorbed) so they have a nice clear picture when they put their tiny scope camera in.

Now, this may sound intense, but there are some good things working here: 1) they caught it very early and 2) they have time to calmly decide on the best approach to fix it. Since he is doing so well, they can start with the least invasive thing and only use the more invasive stuff as a latter option. (A lot of times the situation is more severe and they have to use the “big guns” right away. And yes, that is just a figure of speech!)

The growth is in his brain, and not in the easiest location to reach, so the doctor is being very cautious about how and where he goes in. It is very likely that David will have to do a little rehab depending on what procedure(s) they have to use.

His headaches have been well under control (sometimes gone) since the day after he came into the hospital, so he’s feeling pretty good. He has been kidding around a lot today and seems pretty comfortable with what’s going on. He does know everything and was able to ask the neurosurgeon questions. (Which, if you know David, you will know that made him happy.)

Please keep praying for him. Things look good for the circumstances, but we have a lot of work to do next week.

Lastly, I’d just like to thank all of you who’ve sent messages of thoughts and prayers. We’ve been fortunate that we’ve never really had to deal with this kind of thing before, so I never really knew how much that meant. We are confident that God is working powerfully for David, and we are so thankful for the prayer warriors out there who are lifting us up. (On a light note, we were visualizing that today as sort of a prayer with a “raise the roof” hand motion. God is good!)

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!

Apologies for the extra posts!

Uncategorized

Wow, my phone apparently had a different idea than I did yesterday. I thought I was sharing a single post from another person’s blog, and instead, it reposted nearly everything I read. The good news is: I didn’t read anything embarrassing. The bad news is: some of you may have gotten a ton of notifications about posts that you weren’t interested in at all.

I’m really sorry. I’m still not exactly sure what happened, but I’ll be much more careful before hitting the “reblog” button in the future.

In the meanwhile, the blog I was trying to share didn’t get posted, so I’m copying the link here:

http://alexandamymoore.wordpress.com/2012/01/27/with-all-due-respect-sir-i-believe-this-is-gonna-be-our-finest-hour/

I haven’t read their entire blog, but it appears Alex also has brain cancer. In any case, his post based on this quote from Apoolo 13 really sums up the attitude that Richard and I have about how to fight brain cancer. We’re on a mission.

I haven’t heard from David yet this morning, but we are anxiously waiting to hear what course of treatment he has decided on. I will fill you in when we know something.