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!

People You Need To Meet #35: Ellen Grant

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JustinElliot

My son, Justin Elliott, lived 21 years, 3 months, 4 days and 4 and 1/2 hours. He went through a lot during his young life. When he was four, I divorced his father. Three years later, I moved him to a new town when I married Ed. Justin was almost 14 when I had to hold him while his father was taken off life support and immediately passed away.

Despite all this he grew up into an amazing young man. Justin had a plan, and the world was waiting for him. Education was extremely important to him. He decided to go away to college, attending a dual enrollment program, instead of completing his senior year. I was devastated because I wouldn’t get to enjoy being the mom of a senior. Turned out to be one the best decisions Justin made. That fall Justin matured and thrived. He loved college. Loved his professors, and loved being away from home!! He traveled, by himself, not even 18 years old, to interview at NYU. New York City is a far cry from the little town of Ellijay, Georgia. Of course he was accepted. I thought he should go to Georgia, but Justin was determined to be different. I can’t describe how proud I was of my young man. We celebrated his 18th birthday, and a month later the glass of life shattered into a million pieces.

Justin was home for the weekend. He called me, and said he had a horrible headache and was nauseated. I think now that I knew it was brain related. My mother had two aneurysms, and when something goes on in your head you get sick. But that couldn’t be possible. This was my healthy, athletic 18 year old. It must be a migraine, my sister had them. I understand the first one can be really bad. After several hours nothing was helping, and we headed to the emergency room. After a CT scan the doctor told me Justin had an aneurysm. I remember holding on to the bed rail then going to the bathroom so Justin would not see me hysterical. The memory of Justin being strapped into a helicopter at one in the morning is something I will never forget. Then followed several days of excruciating pain, lots of tests, too many different doctors, and no one who could tell us what was wrong. Then, a specialized MRI showed a tumor. Surgery was scheduled. They said the tumor was encapsulated. They would go in, pluck it out and we’d be on our merry way. Not. February 28th around 5:30, a doctor had to tell me and a huge crowd of family and friends that my only child had 6 months to one year to live. Another memory seared on my brain.

I won’t go into all the details but the next 3 years were filled with chemo, radiation, a year of being on a trial drug, more radiation, many other drugs, more surgery and way too many trips to doctors. Despite having to endure all of this Justin lived his life to the fullest, continuing with college, attending sporting events, going on trips and trying live a normal life.

What I wish I knew. I wish I didn’t know any of it. I wish I didn’t know the pain that Justin would go through. I wish I didn’t have to watch his dreams be shattered. I wish I didn’t know that Justin was more concerned about Ed and I watching him die than he was. I wish I didn’t have to bring him home from NYU, and I really wish I didn’t have to watch as those silent tears rolled down his cheeks on our way home from Athens when we were told the tumors had ” exploded with growth” and the end of out journey was near.

I wish I knew how to be the mother of a very independent young man with brain cancer. How can you let your child go to school a thousand miles away with brain cancer? How can you let him be two hours away, getting himself to treatments and doctor appointments, getting prescriptions filled? He was 18 and legally in charge. As hard as it was, I don’t regret letting him go. What if I had insisted that he stay home while everyone else was off going to college or working and definitely not being home with the parents? Justin wouldn’t let me take care of him. He just wanted to be normal, and he didn’t want anything to remind him that he had cancer. I will have to say that his favorite phrase was “fuck cancer”. Justin actually had a shirt with that on it. He wore it to doctor appointments. The only other time he would mention the word was when I asked him to unload the dishwasher. “I can’t, I have cancer!”

I wish I knew what he kept to himself during those years with cancer. I wish he would have talked to me about it. To this day I don’t know if he ever confided in anyone. His “other” mother, as I fondly call my best friend, texted him those last few weeks. She asked him if he was scared. His reply, “we aren’t supposed to talk about that”.

I could write volumes about Justin, the what ifs and the whys. He is my first thought when I wake and the last when I go to sleep. I will miss seeing him fall in love, get married and have children. I won’t get to see him have an amazing career and make his mark on this world. My biggest fear is that his memory will fade. I am so scared he will be forgotten. Ironically, as I have been writing this, I had to stop and attend a memorial service for Justin’s youth leader. It was much harder than I thought. Justin thrived with Leanne and “came into his own” as he grew up in the church with her. He was mentioned at the end of one of the eulogies today.

I am rambling as I have become accustomed to do. So what I really wish I knew:

How lonely I would be when it was all over. I am very social and having a house filled with family, friends and kids was great medicine for me. The house is now too quiet.

I wish I knew how much people really do care.

I wish I knew how much Justin loved me and what I really meant to him.

I wish I knew that I would become involved with some extraordinary women who would understand what I have been through and will for the rest of my life.

And finally, what I know know:

I am forever changed, and in some ways, for the better. There is a definite line in the sand: before diagnosis and after. I view life and make choices differently now. There is so much that just doesn’t matter anymore. And out of the darkness there will be light again.

People You Need To Meet: #16 Kaitlyn Renae

52 People To Meet Posts

What I had wish I had known before my brain was diagnosed with cancer.

Survivor with a Smile

Survivor with a Smile

My senior year of college had just started, and I started getting headaches just about a month in. At first they were seemingly small, like just regular type headaches. Soon I was missing more classes than I could afford, and I was having them every day.  They were intense. I tried everything in the books to get rid of them, nothing worked. People kept telling me that I was overly stressed and probably drinking too much caffeine, though I’m not a huge caffeine drinker. I just assumed I had fallen victim of those “dreaded migraines.” I never bothered to go to the doctor.

I graduated, somehow, on time, but they continued to get worse. Over the summer while I was counseling at camp, I noticed my memory was terrible. I was leaving and forgetting things all over the place, which is so out of my character. Especially being a counselor. I was jumbling power points and going completely blank with many things.

I didn’t really start to think something was wrong until a couple months later. The headaches were through the night and day. I couldn’t escape them, and I was losing my ability to function day to day. A year after I started having headaches, I finally went to the doctor to get migraines meds. She listened and said, “I think you need to have an MRI.”

Five hours later she had called my house phone, but I had missed the call due to my grandparent’s 50th wedding anniversary that weekend. I didn’t get the message that I needed to call her until Sunday night. Little did I know, this was the start of a journey I didn’t think I was ready for. She said I had an abnormal amount of tissue on the brain, along with some lesions on the different lobes, but she couldn’t be the one to diagnose it. I wish I would’ve realized how much the Lord was going to protect me in this journey, that first phone call being one of them. My family was able to gather and enjoy each other without having to worry about what the answer on the other end of the phone would be, until after the weekend festivities were over.

I wish I would’ve known about the journey ahead. We made it to a neurologist, and he hardly looked at the scans and sent me on my way with medicine I said made my headaches worse. On to a new neurologist we went. It wasn’t until a month after my original results that I was officially diagnosed. On October 22, 2013 I was diagnosed with a brainstem glioma, and possibly MS on top of that. This diagnosis rocked my world. I wish the doctor would’ve been clearer in my specific type on the phone, and I wish I would’ve stayed away from the internet in the waiting period to see the doctor. My life was changed, more positive ways than negative, but nonetheless, a mountain had formed in front of me I knew I had to climb.

I didn’t know how this journey was going to change me or the patience and endurance it would require. The seemingly endless poking and prodding of needles, the hospital gowns, the early mornings and late nights. It all seemed unbearable, but I would receive letters stating how inspiring my story was and how I changed their outlook on life, all because of my faith through all of it.

I wish I would’ve known how loved I am. That I matter. I have a wonderful family, friends, and a fantastic church family, but yet I didn’t really understand that I was loved and cherished by so many. I don’t think I even really fully understood HOW MUCH GOD LOVES ME. I matter in this world. As word got out that I had been diagnosed with brain cancer, letters came pouring in. Flowers were being sent, I was getting little goodies in the mail, care packages – and messages on Facebook from people I didn’t even know saying how I inspired them and how I helped them in their walk of faith. I was overwhelmed with love and God had shown me how incredibly blessed I really am.

My value doesn’t come from man, but from God, and I wish I would’ve grasped and understood this without having to have cancer. If I’m honest, growing up I had some very dark moments where I questioned if my life was even worth living. Cancer changed that outlook forever, every day is a gift and a blessing, not a burden.

I wish I would’ve known how God was going to use me through this. I do not believe that God gives people cancer, or other terrible diseases. I truly believe this is a cause from the fall of man that goes back to the Garden of Adam & Eve, the world became broken. What I do believe is that God can take something so horrible and use it for His good.  From the first phone call there were lots of tears, long nights of anxiety and wondering and questioning if I was going to make it. Am I going to live long enough to get married? Let alone get a boyfriend? Am I going to live long enough to go to grad school? Long nights of wondering what I wanted to leave behind to those I love most.

I decided from the beginning that I was giving this to God. That no matter what happens to me, I want God to get the glory, and I want Him to use this in whatever way He wants, even if that means losing my life. I became a better friend, a better daughter, a more forgiving and loving person, and I wish it would’ve happened without cancer.

God has used my cancer to reach and inspire others. I have had relationships repaired and friendships restored. I never thought in a million years my relationships would be where they are today, and I didn’t know God was going to use my diagnosis and softened heart to repair them. I’ve had friends come to me wanting advice on how to talk to friends with a recent diagnosis, I’ve been able to encourage and show compassion to those who have just started the same journey.   I’ve been blessed to be able to shine His light through such a dark and scary illness. God softened and changed my heart and I’ve never had a stronger faith than I do now.

I wish I would’ve known that God does give you more than you can handle. For all of my spiritual life, I believed God didn’t give you more than you can handle. I was even guilty of telling people such things, though I’m not sure I ever believed it, but I thought it was true. After being diagnosed, I realized I was in way over my head. I have to do things that are only in nightmares, and I quickly realized this is too much. I am overwhelmed and I can’t handle this – on my own. The hospital visits, the long days of being in pain, the spinal tap, unable to work at an age where I feel as though I need to be working, all of which is too much. It didn’t come easy, but I learned that in this world we sometimes get more than we can handle, but God will be there to equip us and guide us to get through it. The passage where it says that His yoke is easy and His burden is light is there because God KNOWS that our burdens can be too much to carry, but gently reminds us, He is big enough to handle anything. God has allowed me to carry more than I can handle, but He is always there before me paving the way and holding my hand.

I wish I would’ve known how to live life to the fullest before the diagnosis. I never realized how much I was missing in life until I heard the word cancer. It’s a scary, mean word, and it really makes you step back and look at priorities. I no longer live in the future as much, or go back to the past, but I stay in the moment. Every second counts, every precious breath, every smile, every beautiful sunset, is a blessing. Less worry and more doing. I wish I would’ve been living like this before I was diagnosed, but I wasn’t, and at times I still don’t, but I am learning each day to take it as a gift, a beautiful gift.

I wish I would’ve known how painful this journey really is. I remember vividly my Grandmother’s vicious battle with breast cancer, and mine has not been remotely close to such battle, but it certainly has been far from easy or pain free. I have had horrible headaches for over a year, almost two now. I thought when we figured out what was wrong we could get rid of the headaches, but that was far from the truth.

All of sudden I realized, I really am sick. We tried so many medicines, I can’t even count. Some that made me cry for no reason, some that made my skin crawl, and some that made my head hurt so much worse all I wanted to do was bang it against the wall. My memory was bad enough without medication, but another made my memory absolutely terrible. I have always been someone who can remember all the kids in the classroom’s name after the first day or two, now that is out of my ability. Medicine that made me lose so much weight I literally felt weak. I remember looking in the mirror and telling myself that I hated looking so sick. My appetite was gone, food tasted different. I would try to drive to a place I’ve driven countless times before, and I would get lost. I had to hand my keys over to my friends at times so they could drive for me. Medicine that made me angry and moody. I felt trapped and I knew this wasn’t Kaitlyn, but yet I couldn’t change it. The countless blood work with the many times I almost passed out, the blown veins, the kinked lines, the burning and electrocuting pain of the spinal tap. And nobody ever tells you how exhausting it all is. The bubble in the back of our heads that I could also have MS on top of cancer.

It’s not easy. It’s difficult and trying, but I have hope. I have confidence that God won’t stop working in me and through this. I wish I would’ve known how much strength I had. “You never know how strong you are until being strong is the only choice you have.” Things have been looking up, more answers have been pouring in, and I am finally going to be able to go back to work. I wish I would’ve known how drastically my life was going to change. God is good, and He will continue to orchestrate whatever is best, no matter what the final outcome.