Who’s Really the Enemy Here?

David's Journey, Dragon Master Foundation, Uncategorized

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When someone you love is diagnosed with a terminal illness, the gut reaction is to attack that disease. That’s certainly how we felt when David was diagnosed, and our initial efforts were focused on ending Glioblastoma (GBM) because that was the type of tumor David had. We were not involved in the world of research, and that seemed the most logical  course of action to us. To strike back at the thing that struck at us.

We thought we knew how to help. As we learned more, we realized that we needed to help find cures for brain cancer as a group of cancers because there is a lot that can be learned by studying them together. We also felt like we needed to help that community as a whole because they are so underserved. A broader goal brought us into contact with many more researchers, and many more ideas.

We were energized by some of the sharpest minds in research, and realized that the kind of analytics we wanted to do are really best empowered by studying all types of cancer, and even other diseases, in tandem. The most cutting-edge research points to cancer being mutations in genes and studying the mutations, regardless of the starting point in the body, is leading to new research pathways.
Cancer is a disease that has plagued humanity for generations. In all that time, we have mostly dealt with it as a disease of a particular body part. We now know that it is much more complicated than that, and we need to empower researchers to follow many pathways.
David had a bright and curious mind. For him, helping researchers was never really about helping himself. It was always about helping other people and solving the puzzle of cancer. Brain cancer is the beast that took David from us, and we would love to see that disease wiped out for good. But what if the answer to curing brain cancer lies in pancreatic cancer research? What if the answers we seek lie in the cure for  fibrodysplasia ossificans progressive? (That’s a super interesting rare disease that has been connected to the brain cancer DIPG. You can learn more about that here.)
It’s human nature to strike back at the thing that hits you. But do we really even know what that thing is? Dragon Master Foundation is focused on putting all of a patient’s information into one giant research platform. It’s a database, yes, but it is also a place where researchers can collaborate and gain access to biosamples. It has a patient’s full genomic data, but it also has their treatment path over time. It gives us a more complete picture of what is going on with the patient and what treatments are successful. It can help us understand why certain patients do well on a clinical trial and some don’t. And possibly most important, it looks at patients across many disease types to compare and contrast things like gene mutations. Instead of having one small group of researchers working on a problem, this platform makes it possible for any researcher, anywhere on the planet, to work on high quality data to help find cures.
Tomorrow is #GivingTuesday. It’s a time when people around the world put a few of their hard-earned dollars into the hands of a charity that they hope can change the world. I’m convinced that Dragon Master Foundation is one of the most deserving places you could make your donation. Here are a few of the reasons why:
  • No one at Dragon Master Foundation gets paid.
  • We direct all of our research dollars directly into this one project that is already speeding research. (One doctor said that it shaved a month and a half off of his typical tissue request workflow!)
  • This project has the potential to help patients with cancer as well as a host of other medical conditions.
  • Through this portal, research can be done on both adult and pediatric populations.
  • It was listed as part of Vice President Biden’s Cancer Moonshot Fact Sheet.
  • It is open access – meaning researchers don’t have to be part of a special consortium to access the data.
  • It is cloud based – meaning the researchers don’t have to download petabytes of data that can take days to acquire. It also means they are not dependent on their hospital’s computational power because they can do their work directly in the web.
Dragon Master Foundation isn’t the only foundation funding this. As of right now, there are 13 hospitals and more than twice as many foundations putting resources toward this project. However, many of them have a specific disease focus where they direct their resources. By donating through Dragon Master Foundation, you can be assured that your donation will go to building the infrastructure that will help all patients, all researchers. This isn’t just a gift to help researchers. This is a gift for mankind. This #GivingTuesday, you can  be part of the generation that changes the world.

Working Together for A Brighter Future

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This week I had the great pleasure of speaking with Dr. Peter Adamson, Group Chair of the Children’s Oncology Group (COG). For those of you unfamiliar with COG, more than 90% of  children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer. That matches our mission pretty well, so I was excited to learn where we might be able to collaborate.

COG is currently focused on collecting biospecimens and clinical data. In layman’s terms, they are collecting cancer specimens (tissue, blood, etc) as well ad information on the child’s diagnosis, treatment and outcome. They have collected a massive amount of data over the past 50 years. They have well over a million biospecimens! More than 350,000 patients have shared data with them. They have biorepositories and databases in different parts of the country and work with over 220 hospitals in the US & Canada.

I am very impressed by what they have accomplished, but ultimately, I believe that the infrastructure we are building can improve the work they are doing. Their focus is collecting the specimens and data. Our focus is taking those specimens and data and making them a perpetual resource backed by robust computational power to allow them to collaborate with other researchers and also analyze and visualize the data in new ways.

To give you some idea of the scale of the data, let’s look at the numbers. There are approximately 14,000 children a year diagnosed with cancer in the US. Collecting a biospecimen would cost somewhere in the range of $1,000. (The NIH currently values that at around $500, but the actual institutional cost is thought to be much higher, thus my $1,000 figure.) So just to collect the biospecimens for those patients, you are looking at $140,000 per year. However, that is just scratching the surface of what needs to be done. Those specimens have to be stored (visualize giant freezers with robots to access the individual samples), categorized, and matched with corresponding clinical records.

Traditionally, most hospitals and foundations have been unwilling and/or unable to invest in the infrastructure that it would take to compile this amount of data. COG demonstrated real vision by collecting this data and they have been able to use it to forward science. Dragon Master Foundation believes that additional computational power, or “big data” analytics, will help them find the cures they seek even faster.

Dr. Adamson said he felt Dragon Master Foundation is taking “a sophisticated look at the challenge.” We know that building this type of computational infrastructure will be expensive, but we also know that it will exponentially decrease the amount of time it takes for researchers to collect and query data. Faster answers to their questions means faster cures for us.

There is no doubt in my mind that we are building a resource that will improve cancer research. It ultimately will help cancer researchers throughout the US, and probably throughout the world. It will make the work they have been doing for years more relevant.

To learn more about Dragon Master Foundation, please visit http://www.dragonmasterfoundation.org. To learn more about the Children’s Oncology Group, please visit projecteverychild.org or childrensoncologygroup.org .

People You Need to Meet #38: Clint Murphy

52 People To Meet Posts

What I wish I knew before my mom got brain cancer… the value and limits of time.

Last picture with mom

For me, Friday, September 12 was like any other day in the life of a presidential campaign staffer. Working from dawn to dusk, doing everything and anything to push the ball just a touch forward in the task of getting John McCain elected as the next President of the United States. I lived and worked in Tallahassee, FL and was the Deputy Southeast Regional Campaign Manager for McCain for President.

That night, a few campaign staffers and I headed up to Marietta, GA for a GOP Unity Rally on behalf of Senator Saxby Chambliss and the Georgia Republican Party. Nearly a thousand Republican volunteers from throughout the state would be congregating, and it was a perfect time to sign up volunteers, recruit people for coalitions, and generally show the flag on behalf of Senator McCain. I had arranged for the Senator to call in to the rally and express his thanks for their support.

The night before I had talked with my mom, and I got the impression she wasn’t feeling well. During the day on Saturday, I talked with her and again got the distinct impression that something just wasn’t right. She insisted that I call her when I got back to Tallahassee that evening and that I shouldn’t worry.

The event was a success, and we were all excited about having gotten so many people signed up and engaged in the campaign. In the months before, the Obama campaign had placed staff in Georgia and tried hard to make Georgia competitive. With nothing but volunteers and me and my teams’ efforts from Tallahassee, we organized the state, built coalitions, and flexed our muscle via earned media events and scared the Obama staffers out of Georgia and into North Carolina.

I dropped everyone off at their respective homes and was entering the code to get into my apartment complex while I was on the phone with my mom. The sun was setting on what had, for me, largely been a great day. Up until that point, Saturday, September 13 had been a very successful day, and I was excited about the future. For my mom, it would be an entirely different story.

As I spoke to her, mom seemed so calm as she described to me the events of the night before and then, with what seemed to come out of nowhere, she said, “They found a mass in my head.” I believe my initial response was pure disbelief, and when she confirmed for me what she had just said, I immediately started to have a panic attack. I had to hang up the phone because I just needed to scream as loud as I could, something that I had honestly never done and have never done since.

I called back and spoke with my cousin who walked me through the events of the following day, which lead to this grim discovery. On Friday, my mom had noticed that her tongue felt thick. She called her various doctors and sadly, none of them returned her calls. She called my aunt and they decided to go to the emergency room.

Initially, my mom was told that it was likely an allergic reaction to something and she was given a prescription for an EpiPen. While getting the prescription filled at the store, mom had a full seizure and back to the emergency room she and my aunt went. It is then that they performed the CT scan and found the mass.

I wanted to drive back to Savannah right away, but between crying and already being tired, I couldn’t see clearly to do that. I went back to my apartment and began to research everything and anything as it related to brain tumors. Everything I read made me even more upset. Eventually, I went to sleep as I was crying so much I could barely see the computer screen, let alone make sense of anything I was trying to read.

The mass was large, and it had tentacles forming something like a dumbbell in my mom’s brain. The CT and MRI had suggested a Glioblastoma Multiforme Brain Tumor (GBM). A GBM is one of those diagnosis that, by and large, has had very limited hope for a long time. Innovations in treating, let alone curing, GBM have not been forthcoming. Having been so involved in politics, I knew that Senator Ted Kennedy had been recently diagnosed with the same tumor and had successful surgery to remove the tumor. I went to work researching where he went to have that done.

My mother seemed so calm as we sat in the hospital room the night before her biopsy. She wasn’t crying and showed no sign of even being nervous about what might lie in front of us. I on the other hand was a mess. I tried to keep a brave face, but I couldn’t. I was scared, sad, angry, and just about every other emotion you can imagine.

We scrambled to get all the necessary forms completed in advance of the biopsy because I was informed that if the tumor were operable; they’d likely go ahead and remove it at the same time. Worried about what condition my mom would be in afterwards, I didn’t want to leave anything to chance.

It was random chance that my aunt and I were walking down the hall when the surgeon came out of the operating room. He informed us that the tumor was inoperable and that it very much looked like a GBM, but would need the path report to confirm that diagnosis. Based on what he saw, he said he thought my mom had less than 3 months to live. We were dumbstruck and heartbroken. Even writing this now, I can feel that helpless feeling that I felt that day in the hospital. With everything in my being, I felt that those words just couldn’t be true.

In researching Senator Kennedy’s experience with a GBM, I saw that he went to Duke. He had surgery, was getting treatment, and doing relatively well, all things considered. I called Duke, got all the information to get a second opinion, and camped out in front of the path lab waiting on the slides so I could send the package to away in hopes my mom would be accepted as a patient.

There was no way that I could or would accept that my mom had less than 3 months to live, thus I went on a one man campaign to ensure that she got into to see the same surgeon that worked on Senator Kennedy’s tumor. My goal was to give my mom the best chance that there was to ensure she would survive this diagnosis and disease.

My mom’s 3-month diagnosis turned into an incredible 18-month experience. Through all the ups and downs over those 18 months, you might be surprised to know that, aside from the initial conversation about her possible death just before the biopsy, my mom and I only talked about her death one more time.

In February of 2010, mom and I made our final trip to Duke. It was on this trip that we had the final conversation about her possible death and she laid out for me her thoughts, as best she could, on the experience that she had gone through in fighting this tumor.

The doctors informed us that the tumor had started to grow again and that we were running out of options and were likely at the end of the line. Most people at this point would assume that we would have had Hospice assistance, but we didn’t. Even after returning home, we still did not have Hospice.

On the return home, mom shared with me that she had few regrets in life. She would do a few things differently, but all in all, she was pleased with how her life had turned out. She wasn’t angry that she had this tumor, nor was she angry that God was cutting her life short. She felt that it had all happened for a reason and that she was confident that God would use this experience she was going through for something better. She had a few people that she wanted to talk with before her journey was over and, if possible, wanted to make a trip to Hawaii. Her strength and bravery was just amazing. I was in awe.

On the other hand, I was a mess. I spent every moment of my time not spent working or taking care of mom, researching other treatment options, calling medical centers, and sending medical records to get another opinion. Sometimes those calls were so hard that I had to call back because I couldn’t control my crying. I was not prepared at all to lose my mom. I was not ready.

On February 28, my mom fell down and hit her head. She seemed fine and the doctor from Duke spoke with us and suggested that unless she seemed to be in pain that we wait and take her to her primary doctor in the morning. Mom seemed fine the rest of the day and evening, however the next morning she began to go downhill.

That Monday, I still thought we had more time! I spent the morning with her and then ran errands in the afternoon to go ahead and purchase the cemetery plot, send off yet for another 2nd opinion, and then have a conversation with my mom’s nurse at Duke about a possible hospital to hospital transfer. The nurse from Duke was the one who actually told me that we were at the end, and that there weren’t other options or opinions and that what my mom needed now more than ever was to be given permission to die. To acknowledge how hard she fought, but to let her know that it was okay for her to let go.

I returned to the hospital, and together with my family and a couple of my mom’s best friends, we sat there with her. By this time she was in a coma. I asked everyone not to cry or be sad while we were with her. We talked about my mom’s favorite flowers and a tear shed from her eye. The nurse at the hospital told me that this could last just tonight or could go on for some time, but almost as quick as she said that it seemed to come to an end. I told my mom how much I loved her, and how proud I was of her fight. I assured her that she would be going from my arms to the waiting arms of her mother and father, and that all would be okay.

Without notice, mom woke up and looked right at me. She turned her head to look at her sisters and friends and then took her last breath. Her death was both peaceful and beautiful.

When it was over, then I cried. I cried out how much I wish I had done more. I cried at how sorry I was that I hadn’t done more. I cried because while she was at peace with what she had been through, I was not, nor was I even ready. I felt like I needed more time.

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Mom Hug

Since my mom’s death, I have gotten involved with the National Brain Tumor Society as the Lead Advocate for Georgia. Additionally, I am a brain tumor caregiver mentor with Immerman Angels. I want to use the experience I went through and the lessons learned to help others going through a similar situation and try my best for the experience my mom went through to be used to help benefit others.

It should be noted that when I read Senator Kennedy’s book, True Compass, he referenced his own desire to share his experience with GBM so that he could offer hope to those who faced a similar diagnosis. Knowing Senator Kennedy’s experience showed me the path to hope for my mom, and for that I am grateful.

52 People You Need To Meet: #22 Richard Haddock

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David Pearson is my stepson, who I immediately liked when we first met. He was a very odd kid and loved to be different. Whenever someone told him that he was weird, he would simply smile and say “thank you”. David never cared what anyone thought about him and was always befriending the friendless. He would almost seek out the ones who looked wounded, or in need of a smile, or a joke, or to say something totally unexpected. David treated everyone like his best friend, and they all loved him for it.

David was a stranger to no one, and he is an amazing, wonderful soul. David Pearson was diagnosed with brain cancer, at only 16. This is what I wish I knew before then. Growing up, my parents, especially my mom, taught me that I could be anything, do anything. When David was diagnosed with a GBM (glioblastoma multiforme), my thought was that everything was solvable, that any issue could be analyzed, understood, and fixed, but I was wrong. There is currently no cure for GBM, and the standard of care hasn’t changed much in 30 years.

When we went to the hospital to help David and figure out what to do, we saw that there were lots of children with cancer. One that particularly stood out was a young man named Justin, who had leukemia. His mom, Kathleen was a nurse, and she seemed to know her way around the hospital. She was very kind to us and immediately took an interest in David. Justin and David became hospital buddies and in the short time they were together, became friends. I assumed that Justin would be fine, and that eventually he would be a healthy young man, able to live his life. I naively wished that David had something “curable” like Leukemia.

We weren’t sure what to do, since David was living in Virginia, and we lived in Kansas, but our friends, Jamie and Jennifer offered to let us stay in their house in Virginia while David was going through treatments. We essentially moved into their home, even bringing our dog, Cooper, to stay with them. They were awesome hosts and we could not have done it without them. They continue to help us as well as others.

We weren’t sure what to do with our cats, still in Kansas, and how to look after our home, but our neighbors, Jay and Michelle quickly offered to help with feeding the cats and watching over the house. It was one more thing that just got handled and we didn’t have to worry about. As we worked to help David with his health, we found that there were times that we simply could not get everything done, and that’s when Jay and Teresa stepped in and helped with all sorts of projects. There are so many kids and parents who did little things to help us along the way! Please forgive me for not naming everyone here.

A few months after David’s diagnosis, we got word that Justin had lost his battle with leukemia, and we were stunned. I thought that Justin would be okay,  but the battle had just become too much, and he lost the fight. We went to Justin’s visitation and waited for two hours to pay our respects. When we finally made it to Kathleen, she asked about David. I was heartbroken and amidst her pain, Kathleen was asking about David. Kathleen has been an amazing friend, who continues to fight for cancer research and is a treasured friend.

As we continued working to find a cure for David, we came into contact with many amazing nurses, doctors, researchers and others who are doing their best to make things better for families going through this. Dr. Hwang and Dr. Packer of Children’s Hospital in DC were very vigilant to do everything they could to help us. They were also instrumental in finding a clinical trial for David at Children’s Hospital of Pittsburgh.

Dr. Jakacki treated David in Pittsburgh with a new immunology study that helped him for 10 months until the cancer got smarter and the cancer began to grow. All through our journey, we had the help from many friends, who did things to help that we could never repay. Whatever we needed, friends, and people we didn’t know were our friends yet, helped us in ways that were simply amazing.

David lost his battle at the young age of 18. I think of David every day, and think of what might have been. I miss his sense of humor, his amazing personality, his love of everyone, and his amazing faith. On the day of David’s funeral, a lot of our friends came to pay their respects. I’ve never been one who goes to funerals because they’re uncomfortable. Many people came to show their love of David, including a bunch of his friends from high school. They all wore Hawaiian shirts because David always liked to wear them to be different and stand out.

I was not prepared to see my friends David and Loren show up, as well as Dr. Hwang among many others. My brother, David, also made a point to come and be there for us. It was a very humbling day, and changed my view of funerals. When David’s battle started, I thought that we would be able to fix him, to make the cancer go away. My parents taught me that anything was possible, and even though I’d had various setbacks in my life, I always came through it.

David’s journey, though, was different. Here was this battle with cancer that David lost, but is that it? Is that where it stops? Amanda and I decided that even though David’s battle was over here on earth, that there were many more children and adults who are fighting this battle every day. Many were winning, but too many are losing. After a year or so of thinking about what to do, and trying to “recover” from such a loss, we made a decision to help. The battle for David may be lost, but the war against cancer is certainly not over.

We formed the Dragon Master Foundation in 2013 to bring big data technology to medical research. When we started, we had no idea how many people would offer to help, even though they had no family members who had ever taken on the cancer battle. We’ve been very humbled by all the help from many different people, including Angie, Miles, Kimberly, Roger, David, Linda, Jolee and many others.

I often ask myself what it means to be a Christian, and I think that our friends and family have shown me in many ways what that means. As we struggled with what to do throughout this ordeal, and ultimately our loss, Amanda and I would pray together, and we would feel a sense of calm that I cannot explain nor will I try. Things just happened for us that we can’t explain, I think, because we were connected to something greater than ourselves.

Some days I see David’s picture and just smile. He always made me laugh, and I think of what a privilege it was to have known him and be part of his journey. The picture of David with this article is just a few weeks before his diagnosis. You can see that David was a handsome young man, full of life and laughter and love and promise.

People have told me that it gets easier over time, but it really doesn’t. It makes me sad to think of what might have been. That full life that David had envisioned is gone, and his absence is felt every day. It doesn’t get easier, you just learn to live with it.

Our friends did amazing stuff for us. From all over the country, we have friends who have done so much for us we could never repay them. Even now, we have new friends who have come into our life after David died, and really want to help us with our foundation.

Some days I wonder why they help us so much, but I’m trying to be gracious and just say thank you without question. It hasn’t been easy, but our friends have made it easier for us. I wish I’d known how to be the kind of friend that all of the people who helped us through this journey have been. They figured out what we needed, and then just did it – they didn’t say to call if we needed anything. Friends show up when you’re in need – especially at the funerals of loved ones. I wish I’d known how to be a better friend.

We’re all on a journey that we don’t know the script to, and some days we’re just trying to get through the day. Be gentle, be kind and take care of each other. Life isn’t easy, but with the help of friends and family it’s well worth the ride. Thank you is not enough – but thank you to all the friends who have helped us and continue to help in this journey.

Editor’s note: You can keep track of Dragon Master Foundation at the website: http://www.dragonmasterfoundation.org , on the Facebook page, or on Twitter @DragonMasterFdn .

52 People You Need To Meet: #12 Shawn Ratcliffe

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What I Wish I Knew Before My Son Was Diagnosed with Brain Cancer

I wish I had known how big a role you truly play in the medical care of your loved one. TRUST YOUR INSTINCTS! They are nearly always right and you know your family member much better than the doctors. Also, make friends with the nurses – they can be a huge advocate when you need a different opinion or help in understanding the “system” or even getting past some of the quagmire you encounter with all the different specialists insisting on their unique treatment plan.  Ask to see the “chart” (if they will let you) so that you can better understand just what the doctors might be thinking. If you don’t feel comfortable with the answers you are given, keep asking, don’t be brushed aside as if you are too paranoid (“just being a Mom”), don’t back down, and know that the doctors are doing their best but in the situation of brain tumors their best is still greatly lacking in knowledge and expertise.  Every patient is different, and YOU are the best one to help your loved one. From diagnosis to death is a rollercoaster ride on every possible level, take one day at a time and always look for the positives.

For us, it started out like any other Saturday morning.  Matt and I had breakfast, no one else was up yet. He was off to get his eyes checked as we were sure that was what was causing his headaches. Not long after he arrived at the Dr’s office he sent me a text “They want me to get an MRI”. I was stunned, and in my heart, I knew we were headed for something scary.  Within a few hours, we heard the words that would change our lives forever. “A very large mass on the right front lobe of your brain. It is cancer.” He was 20 years old.  By Sunday afternoon, 24 hours later, the tennis ball size tumor had been removed, or at least 90% of it. Matty bounced back like a true warrior, despite major pain and swelling, and on Thursday afternoon, he and I walked out of the hospital, confident that the worst was behind us.  Naïve, I know.

Within a few weeks, the swelling was so bad that they had to put in a VP shunt.  Within about a month, they removed the shunt as it had caused massive infection.  He was now experiencing Grand Mal seizures, loss of memory and functionality.  Shortly after that, he was fired from his job, and we added major anxiety and depression to our list of issues.    Basically, everything that could go wrong did go wrong.  He continued to focus on school, and within just over a year, he graduated top of his class at ITT Tech. It was truly a highlight of his life.   After 6 weeks of radiation, 11 months of chemo, and 5 stays in the hospital we finally heard the words “no evidence of tumor”, and it looked like we were finally getting a break!

With his confidence at an all-time high, he accepted a job in San Francisco, California, and we moved him out there.  I was, of course, devastated and proud all at the same time.  There were many struggles during the 18 months he was there.  He had just gotten his dream job working for Google when we realized the infection had never really gone away, and two more surgeries would be required.  The first was to remove the infected brain plate and start him on aggressive antibiotics.  Of course, during that time the cancer returned, and by the time they were able to replace the brain plate, the tumor had grown to the size of a fist.  It was stage 4 and angry.  The doctor was so aggressive in the recession of the tumor for the fifth and final surgery that Matty lost half of his eyesight in both eyes, the use of his entire left side, his short term memory, and some of his cognitive skills.  We managed to get him home to Valley Center, Kansas after an extensive stay in the hospital and quickly signed up for a clinical trial through Mayo Clinic.  But to no avail.

Just days after his 24th birthday, we were told there was nothing more they could do.  Matty wanted to go home and party with his family and friends and that is just what we did.  For the 3 weeks and 3 days he was with us, we opened our home to anyone, anytime.  Friends and family came from all over the country to spend time with him, reminisce about the good times and embrace the present, soaking in every moment with him. It was such a difficult time filled with tears, laughter, heartbreak, stress, and always love. Lots of love.

Matthew came into this world on a Sunday morning at 8:53am as a content, happy baby boy and left on a Sunday morning at 8:35am as a peaceful young man ready to let go of this life and seek out new adventures. It was a true privilege to be with my son for both. I cherish the memories that help me never forget, help me learn, help me survive.

During his entire fight my son displayed a kindness and gentleness that I could only watch, I felt none of that.  He always thanked everyone for their assistance and never lost his patience, despite severe pain at times.  He was constantly trying to help people feel comfortable with his cancer, with a ready quip or comeback to make them laugh.  Often times when a nurse finally arrived with pain meds to help with a horrible headache, he would purpose marriage and make them know he appreciated their efforts. I, on the other hand, was tenacious if not demanding when it came to his care and pain management.  His last effort to help others was to donate his body to science.  It was his hope that somehow he just might help find a cure so others would not have to endure what he did.

My wish is for everyone to enjoy today, whatever it brings, and make the most of it.   My son is gone in body, but he lives on in our hearts and our memories.  I am a better person having experienced this pain and heartache, no matter how awful it has seemed at times. It has softened the rough edges, dimmed the harsh blacks and whites and helped me focus more on the moment. I have finally come to a sort of peace with the fact that I’m alive and healthy, despite my desperate pleas that I be allowed to somehow take his place.  Matthew is my hero, and I just hope that I can make him as proud of me as I am of him!  Live, Laugh, Love

 

 

 

 

Signs

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One of the things I’ve learned on this mourning journey is that a lot of people believe that their deceased loved one can send them signs. I respect all views on this, but personally, I believe my son is in Heaven. I have come to believe that someone (David? God?) also has a way of putting little signs in our paths to give us some comfort. Today, we had a sign like that, and I’d like to share it with you.

We are on our first significant trip with Austin and Kinsley since David passed. I think we have all been quite aware of his absence, but we have been enjoying the trip to London and remembering him through stories. We went to lunch at the Hard Rock Cafe, which was something I’ve done many times with David and Austin. It was Kinsley’s first time at a Hard Rock Cafe, so that was special for us. We were talking about collecting and trading pins with a server who came to our table. She was not our main server; she just happened to bring the salads. She held out her pin lanyard, and I saw what looked like a chef pin. I asked her about it, and she said that it was a fundraiser pin that had only been available for employees to purchase. It was for a chef at the Hard Rock Cafe in Rome(!) who had cancer. My heart skipped a beat. In my 20+ years of collecting Hard Rock Cafe pins, I’ve never seen one with a chef on it. To see one that was created especially for a chef with cancer was overwhelming to me.

If you knew him, you probably know that David wanted to be a chef. He also dreamed of going to Italy to study. I told her about David, and couldn’t even get through the story without crying. She immediately took off the pin and gave it to me. I tried to get her to at least let me trade her for it, but she wouldn’t hear of it.

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This is me with Elan after I stopped crying. 😉

So she became the first person outside the US to have a Dragon Master Foundation wristband. And we spend the rest of the day feeling like David was with us in spirit on our trip.

 

It’s A Revolution, I Suppose

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This past weekend I had the opportunity to meet some women I had previously only known through Facebook. We traveled two and a half hours to meet with about 30 ladies who have all been caregivers to a loved one with brain cancer. It was cathartic, energizing, sad and joyous. They are amazing people.

As I was talking to them, I realized that though we talk a lot on Facebook, they didn’t really know what the Dragon Master Foundation is or what we hope to accomplish. They asked, and I told them my vision for the foundation. They all seemed excited and supportive. They told me their stories – some of which made me downright angry.

I can’t share the stories they shared with me. Those are for them to tell, but I can tell you what I told them.

We started Dragon Master Foundation because of one main incident. We heard Dr. Anna Barker speak last October, and she brought up and quickly dismissed her dream to have thousands of genomes in a database where she could compare the data. It’s a ridiculously large dream for “mere mortals”, but that type of technology is already in use by big business and governments. It’s how the NSA tracks all the phone calls and emails they collect. It’s how Google knows what you bought online and how it suggests other products. It exists. It is not being made accessible to these researchers. Why? Well, it is expensive, for starters. A database the size and scope of what they need will cost millions of dollars. And that is just to build the empty database! Collecting the data that they need to go into the database could potentially cost even more… unless…

What if we could find a way for the existing institutions to work together? What if we could compile all the data they have, make it easier for them to access and study, and then also give them access to thousands of other records? So researchers would go from looking at 50-100 records to looking at several thousand. Patterns would be easier to spot.

The technology exists to do that, but the project is so large that no one has had the funding to use it. That’s where we come in. Dragon Master Foundation is going to build a database that will be accessible to member institutions to use. It will have genome data, but it will also be able to house clinical data, and environmental data.

Precious little is known about what might cause brain cancer. The few available drugs work for some people, some of the time. We need more information available to the researches so they can begin to understand why that is the case. Patients and caregivers frequently credit diet, exercise, and other environmental data as the key to longer survival, but that data isn’t being widely studied. There are so many other factors to keep track of, there simply isn’t room to store that kind of stuff, too.

We want to change all that. We want to build the researcher’s dream database. They need the proper tools to fight this beast. And guess what? Once we compile this kind of data, there is no telling what other implications it may have! This is an investment in our future – our children’s future – and we need your help.

If you know someone who wants to build a better world for research (doctors, scientists, programmers, etc), please tell them about our project. We welcome collaboration, and we plan to be the most valuable resource these doctors and researchers have.

And if you are wondering about the title of this post, go listen to “Radioactive” by Imagine Dragons. I could write a whole other post on this song and the inspiration I get from this band. Maybe I’ll do that!