What’s Really Important: 52 Blog Series Update

If you have been paying close attention, you know that we have missed a couple of weeks in the 52 Blog series. From January through June, I posted one  story a week, usually on Sunday. If I’m being honest, getting those stories published on time was probably the only thing I was doing with great regularity.

This past month, I have been VERY busy. The “day” job has been busy, and Dragon Master Foundation has also been demanding a lot of my time. I haven’t been pestering my writers like I had been, and there have also been some personal issues with a few of the writers that have kept them from participating. It seemed that it all came to a head in July and the blog has suffered.

But you know what? It’s just a blog. The point is to share stories that will help others down this path and to raise awareness among those who we hope will never travel this way. It’s important, but it is secondary to the real world. The real world demands our time and energy, and rightly so. I hope that you will stick with us through this rough patch, and I believe that we have some wonderful stories yet to share with you this year.

In the meanwhile, I wanted to share Danny’s story with you guys. Danny is a brain cancer warrior who is having a birthday on July 25th. You may have seen his story on the news or on Facebook. He has DIPG, which is a particularly nasty brain cancer. Making his day a little brighter will make your soul smile.  In case you missed it, here is his address:

Danny Nickerson
PO Box 212
Foxboro, MA 02035

If you mail a card tomorrow, it would still make it there in time for his birthday.

 

Shocking Donation From A Teen Should Have Everyone’s Attention

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This young man did something shocking on January 15, 2010. This story caught my eye because it was about a kid with brain cancer. A kid who liked soccer and cooking. A kid who died on my son’s birthday in 2010 – the year my son would be diagnosed with the exact same kind of tumor. But none of those are the reason that I’m sharing this with you.

Here’s his story if you want to read the whole article: http://m.michiganradio.org/?utm_referrer=https%3A%2F%2Fm.facebook.com#mobile/10466

The shocking thing about Laurance Carolin is that he was the FIRST “child” to donate his brain to this hospital for research. That is significant to me, and it should be to you, too. Here’s why:

1. The C.S. Mott Children’s Hospital at the University of Michigan has been around since 1905. So in more than a hundred years, no one had made the decision to let researchers study their child’s brain after death. Laurence and his parents made the heart-wrenching decision to donate his tissue to help others. It isn’t like organ donation. They knew it wasn’t going to directly save a person’s life. They had the VISION to understand that it could save thousands of lives down the road.

2. Tissue donation is rare. I’m working on this issue every day, and even I didn’t realize it was this rare. It is dependent on people being generous in one of the scariest times in their lives. I don’t know about you, but when I’m scared, I’m usually only thinking about myself and my family. Having the presence of mind to think beyond your current situation takes courage.

3. Brain tumor biopsies only yield very small samples. Because of the location, surgeons have to be particularly careful with tissue removal, and the result is frequently tiny pieces of tissue that are not useful for research. Having access to the brain post-mortem means that they can take larger pieces of tissue for study.

4. This hospital took the tissue to use for research. That might not sound significant to you, but it is. They could have said, “Sorry, we don’t have a program to do that.” I’ve heard of other hospitals saying, “Sorry we don’t have room to store it.” The C.S. Mott Children’s Hospital at the University of Michigan found a way to make Laurence’s donation matter, and it may not have been easy for them.

5. You have the power to make donations like Laurence’s more significant. The whole point to Dragon Master Foundation is to build an infrastructure that multiple hospitals can use to collect, store and analyze this type of tissue. There are still places where the tissue not needed for diagnosis is simply discarded. And yet, at the same time, there are researchers who don’t have the tissue they need to do research.

It is a significant problem that we are just now able to solve. Technology is just getting to a place where it is somewhat affordable to build the type of infrastructure that researchers need. This database will help researchers at multiple institutions. They will have far greater access to the data they need to find better treatments, and ultimately cures.

I believe with all of my heart that this database will help researchers cure cancer. I can’t do the research, but I can help raise the money for them to have this resource. If you want to help, too, please get in touch with me. Everyone can play a part!

What Are You Doing To Cure Cancer? You May Be Surprised At How Much Power You Have In This Battle.

This morning I woke with a start and was completely wide awake. I am not a morning person, so this was very unusual for me. I had been awakened by my dream. In my dream, I was able to think a little more freely about some questions as they relate to cancer research, and I woke up super excited to put those questions down on paper.

The timing is perfect as four board members from Dragon Master Foundation are traveling to Philadelphia this week to meet with the Childhood Brain Tumor Tissue Consortium. This is the second meeting for Richard and I, but the first time we are able to take other board members. It is significant because the progress we can make in person is more collaborative than what we can discover over the phone. Rapport has been built, and I believe both teams are eager to forge a bond that will help us move this big data project forward.

I can’t really share every thing that is going through my mind, but there is a central issue that I think is key for all of us to understand. It starts with Ted Kennedy.

Ted Kennedy was diagnosed with GBM in 2008. He went to the best doctors money could buy, and he died anyway. There is much to be learned about brain cancer. My son, David, was diagnosed in 2010, and he died in 2012. He also had amazing doctors, and unlike Mr. Kennedy, David had great health and youth on his side. It didn’t help. The doctors and researchers didn’t have any new information to work with that might make a difference. There has been little progress in brain cancer research in the last few decades. However, in the last couple of years, scientists have discovered that GBM is not just one disease. There are at least four subtypes. It is easy to understand that these subtypes might all react differently to different treatments. Right?

And now for the really important part. If there are four subtypes of GBM that have just recently been discovered, what other things might we have been missing in the “big picture”? You see, we are in a revolutionary time in both science and technology. And one can barely keep up with the other. Researchers are pushing to the edge of their worlds – eager to go farther, faster. Data engineers are using bigger sets of data in new and innovative ways – eager to go farther, faster. But there are precious few resources being given to bring these two sets of people together. Imagine a researcher writing out all the questions he or she is trying to answer. There may be hundreds of possible scenarios they want to investigate. It would take a whole lab full of people months, or maybe even years, to answer all the questions. They might not ever be able to answer the questions because they simply don’t have access to enough data.

That is where the data engineers come in. They can take the data and program the computer to find similarities and differences, greatly reducing the number of man hours needed to get answers. The questions are hard, but the answers could be easy.

However, before any of that can happen, we have to build the database. The exciting thing for us is that the team at CBTTC has already begun doing that. They have started “small”, with childhood brain tumor patients, but their vision is big. We believe it is going to be able to scale quickly to include adult tumors and then even beyond brain cancer. This is the way research will be done in the future, and we are poised to make it happen now. NOW. And the faster this database is built, the faster they can save lives.

To say we are working with a sense of urgency is an understatement. It woke me up this morning. I think about it every day. I truly believe the only thing standing between us and a cure for cancer is this lack of a database. So we are going to build it, but we truly, desperately need your help.

Everyone can do something, and right now the thing we are going to need most is resources to build the database. We need citizens like you to care about a cure for cancer right now. You need to ask your hospitals if they are sharing data. Don’t accept no for an answer. We need to build this database big enough that they can all share -which is going to take a lot of money. The good news is that the major expense is in building the database. Once the resource is built, ongoing expenses will be a fraction of the start-up costs. So the help we need in the beginning will diminish over time. When the database is fully functional, it will save money elsewhere that could be re-allocated to fund the database.

Please share this story with everyone you know. It is so important that we get this database built. It is too late for my son, but there are so many other lives at stake. We can’t afford to wait for someone else to fix this problem. We have to do it ourselves. Now.

If you’d like to donate to the project, you can make a tax-deductible donation here:

http://www.dragonmasterfoundation.org/get-involved/

If you would like to plan a fundraiser in your area, please let me know and we can help you get started. We CAN do this!

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You Can Create Your Own Good Day

Today started badly. Like, no sleep all night and bad feelings heavy on my mind kind of badly. As I was getting ready for my day, I looked in the mirror and was kind of shocked at my reflection. The weight was clearly written in my face. I could have easily taken a mug shot and looked like I was in a police lineup.

The issues on my mind were big. Grief is always mixed up in there somewhere, and today had some extra issues. Grief and the other issues are all mostly beyond my control. I can’t control circumstances or how other people will react to them. What I can control is my reaction.

So, today I chose to use the old adage “fake it ’til you make it.” And the world – for the most part – didn’t let me down. From some positive messages from friends to really awesome co-workers to family that always has my back, I made it through the day one encounter at a time. My first encounter was an opportunity to bend a rule and help someone in need. I told them that I was having a bad day and so I was going to do something to make their day brighter. It was a big step toward turning my day toward the positive. And when I went to wash my face tonight, I could see the difference on my face.

After a long day, I actually looked better at the end of the day than I did at the beginning. My eyes were brighter. My face had more color. I looked like someone I could recognize. I like that person far better than the person from this morning.

I thought I’d share this observation about morning me vs. evening me because I know a lot of you struggle with difficult days. It may not work for everyone, but I challenge you to give it a shot.

Five Reasons Why You Should Join the Fight Against Cancer

20140629-230537-83137451.jpgWhen we first announced the name of our foundation, people thought we were a little crazy. I understand that the name is unconventional, but so is our goal. It is different. Some might say impossible. So our name reflects not only the enormity of the task, but also that we plan to be successful.

Scientists have been fighting cancer for decades. We have made some advances to be sure, but we are a long way from declaring victory. There are many warriors in this battle, but no united force bringing them together. We live in the Information Age, but research information is in silos that are hard to access. We need the power of the data in every researcher’s hand.

I believe that most people believe, like I did, that there are vast resources available to cancer researchers. That is not the case. There are excellent pockets of data out there, but they are kept at institutions that have limited abilities to share the data with others.

From the National Institute of Health to St. Jude to your local hospital, information is being gathered. It may or may not, ever make it beyond the walls of that particular institution, though. We need a revolution in our healthcare system. That is why we formed Dragon Master Foundation, and that is why we need you to get involved.

Reason #1-
However small we are, we should always fight for what we believe to be right. And I don’t mean fight with the power of our fists or the power of our swords…I mean the power of our brains and our thoughts and our dreams.” – Cressida Cowell
We have to imagine a world where the cure for cancer is found. What will that world look like? We believe that this is an exciting time where data can be truly harnessed by a new generation of computers. Where a researcher’s theory can be tested, enhanced, and modified within the confines of a database, sparing thousands of manhours of research.

#2. “The Alpha protects them all.” – from How To Train Your Dragon 2
I take this quote two different ways. The first is that the largest cancer research organizations should lead the way for us all. I believe they are trying, but they haven’t found a way to bring it all together. The movie this quote is taken from shows a new “alpha” coming to power. The new Alpha isn’t bigger, but it brings together the power of the group. Above all else, it wanted to protect those it loved. Anyone who has watched a loved one fight cancer can understand this need to protect. Some of us have been powerless in the fight. There was no alpha to bring the group together. Dragon Master Foundation wants to change that.

#3. “I’ve coulda gave up then, but then again I couldn’t have ’cause, I’ve traveled all this way for something.” – from the song “On Top of the World” by Imagine Dragons
Cancer has taken it’s toll on my family’s life. It is a horrible and devastating reality, and it will strike one in three Americans. How many people are there in your family? Those aren’t great odds, are they? I was ignorant about cancer before my son was diagnosed. We travelled through Hell, and it would be the easiest thing in the world to run and not look back. But I’ve travelled down this road for some reason, and I believe the reason is to rally the troops. You may choose to wait until this battle comes to your door, but I’m praying you won’t.

#4. “To have a child is the greatest honor and responsibility that can be bestowed upon any living being.” – Christopher Paolini in Eragon
It’s a popular saying that “it takes a village to raise a child”, and if that is the case, then we are all parents – whether or not you have a biological child. We are all stewards of the Earth and those who walk upon it. There are many worthy causes to fight for, but among them, cancer is one of the most deadly to the most innocent among us. There are few things to compare with cutting a life short. We ruthlessly pursue murderers and terrorists, but we are not pursuing cancer with the same vigor. Cancer killed my child. I’m fighting so that we can stop it from killing yours, too.

#5. “He doesn’t understand that he’s the one that has the power to stop it. He simply can’t imagine that one little boy could be that important.” – from the Neverending Story
It is hard to imagine how you make a difference in the fight against cancer, but you do!! With every person that stands up in the fight, a researcher is more energized in their work. With each person who commits their meager donation to the cause, we inch toward our goal. With every share of a blog post or Tweet or status, you tell the story for people who can no longer advocate for themselves.

The fact is that you do make a difference. Your voice, your time, and your resources matter a lot in the fight against cancer. We appreciate each and every one of you who have joined in this fight with us. And if you would like to learn more, read about our goals at http://www.dragonmasterfoundation.org

 

People You Need To Meet #35: Ellen Grant

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.

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