Five Reasons Why You Should Join the Fight Against Cancer

Uncategorized

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

Uncategorized

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.

52 People You Need To Meet: #24 Beni Hood Fries

52 People To Meet Posts

I am always intimidated by having to express into written word how I feel. I often feel that my words are inadequate; however, I was deeply honored when asked to share David’s and my story and to contribute to the poignant, powerful and touching blog “52 People You Should Meet”. The question posed to us was,” What I wish I had known?” This is obviously a very thought provoking question and not easy to answer.

David and I were married at the age of 21. I can honestly say that we did not know much at that time in our lives; however, being young, dumb and in love, we were sure that we could conquer the world. We did not exactly conquer the world, but we did build a good life. Over our 27 year marriage, we raised three children, adopted a few pets, learned many lessons (sometimes the hard way), made multiple moves, made many friends, shed a few tears and had many, many good laughs. Although, our life was not perfect, it was more than good, and we were most definitely happy. I knew that we were blessed. In the spring of 2007, our world literally crumbled around us. I do not think that anything could have prepared our family for the road that lay ahead of us.

In early April of 2007, David started to experience an odd warming or tingling sensation in the right corner of his mouth and the pads of his thumb and forefinger of his right hand. They were infrequent in the beginning but over time increased. The first time he told me about it, I actually laughed at him. I wish I had known that something so innocuous and seemingly benign were actually focal seizures. Those sensations were the first known signs of David’s brain tumor. It took until June before we knew what we were dealing with.  I can say with confidence that knowing about the brain tumor earlier would not have changed David’s outcome; however, the complications from surgery may have been less had the tumor been smaller when it was removed.

When David was first diagnosed with the brain tumor, I thought the worst of the worst had happened. I was wrong. In November of 2007, a virus settled in David’s spine and left him paralyzed. Although unusual, this was probably caused by his cancer treatment. He spent the next three months in three different hospitals. I watched horrified as my husband’s dignity was stripped from him. I spent countless nights sleeping in hospital chairs and learning how to care for a paralyzed patient. I was able to bring David home in February of 2008 and did my best to care for him. It was a privilege and honor to be David’s caregiver, but it was the hardest thing I have ever done in my life. I watched helplessly as he lost hope and became weaker each and every day until he died on July 19, 2008. It was gut-wrenching. I have said multiple times that had I known that he was going to spend his last days and months paralyzed and miserable, we would not have done treatment after his surgery. Instead, we would have just enjoyed what little time we had left together. With that said, I am not sure that it is possible to enjoy time with a loved one while waiting for them to die.

So many times, I have asked why? Why did a good man have to get sick and die? The answer has to be, why not? I drove myself crazy trying to understand how a young, vibrant, active and healthy man, could get so sick with brain cancer. Did he eat something? Was he exposed to something?   The truth is we will probably never know those answers. Life is not always fair, and really bad things do happen to really good people. I have also asked more times than I can count, did we do everything we could to save him? And yes, we did. We sought the best treatment from one of the best brain cancer centers in the country. David had Glioblastoma Multiforme which is the deadliest form of brain cancer there is. There was no cure for it then, and sadly, there is still no cure for it.

“What I wish I had known?” After thinking long and hard on that question, the answer is nothing. Life is not meant to have a crystal ball.   I personally think that knowing ahead of time about the wonderful surprises we will experience during our lives, will only dim their joy. And I think knowing ahead of time about the horrible things life will hold for us, will only paralyze us and prevent us from living fully and experiencing all the joy we can. As cheesy as it sounds, life is meant to be lived wholly and completely, and that cannot happen if we know what life will hold for us.

After David had died, it was almost impossible for me to wrap my head around the fact that the world kept going virtually unaltered, and my life was in pieces around me.   The pain was so intense that it literally took my breath away. The visions of that thirteen-month nightmare lived with the kids and I for months and even years. In fact, for a time, I was afraid that I had lost the previous 26 years because all I could see was the nightmare of the last 13 months of David’s life. Thankfully, over time, the good memories did return. I can say that, for the most part (we still have some bad days), the kids and I are doing well now. It has not been an easy road, but we have learned to experience and treasure life’s joys again. We have also learned not to feel guilty about it.

I always knew that David and I were blessed (and I still am) with an amazing family and wonderful friends. I will never be able to pay forward all of the love and kindness that was shown to us during David’s illness and the years following his death. My kids and I were shattered and shut out much of the world around us. Fortunately for us, our family and friends showed a lot of patience and did not give up on us. They were waiting when we were ready to join the world again.

We miss David each and every day, and it is not necessarily worse during holidays or special occasions. Although days like today, Father’s Day, still sting a lot. David was an amazing dad and loved his children tremendously. I have no doubt that David looks down on his adult children with nothing but pride. I see a piece of their wonderful dad in each of them and that brings me tremendous comfort. This is the sixth Father’s Day our children have had to whisper “Happy Father’s Day” to their dad and hope he hears. I know he hears…

With David Always in my Heart,

Beni

Editor’s Note: This post is about David Fries, Beni’s husband. It is not the same David that is mentioned in normal blog posts. David Pearson is my son’s name. Sorry for any confusion. – Amanda

52 People You Need To Meet: Special Edition – Michael Balasek

52 People To Meet Posts

Editor’s note: Heading into Father’s Day, we wanted to bring you a special perspective from a son. This was written a few days ago, but we were just now able to publish.

There are endless things I wish I had known. I wish I had known not to withdraw. I wish I had known to make the most of our time. I wish I had known to make the most of that time for my siblings. I wish I had known that was the last Kwikfish he’d set for me. I wish I had known that was my best shot at a buck with him standing over me. I wish I had known that could be our last car ride, our last conversation. I wish I had known to have a beer with him. I wish I had known what to ask him. I wish I had known how to say goodbye. I wish I had known just to say goodbye. I wish I had found a way to accept it, to allow it to feel more real, to allow myself just to feel it more. I wish I had known that I wanted to feel it more before I couldn’t. I wish I had known the diagnosis and what was to follow would be difficult. I wish I had actually appreciated what those difficulties were. I wish had known how quickly I’d get to this place.

Today marks ten years. Ten years ago to the date that my father passed away from a Glioblastoma. For the last ten years, I’ve used a desk calendar. Some were by Gary Larson, some by Avery. This year’s by Mead. And every new month, I’d write that date on the bottom-left corner. I suppose I never completely understood why, even reflecting now. Perhaps it was to remind myself, or to track those annual milestones, or because it just became habit. Perhaps it was because somewhere in the impending dampness and blurriness I actually always knew this place was close.

There was a time where the emotions were raw. Where anything could get in through the cracks. A gust of wind. A moment alone. The dark. My reflection. Silence. Anything. Their arrival seemed always ill-timed and inconvenient. I hated that I felt that way. I still hate that I felt that way. The emotions came in waves. They would crash and they’d break over everything. I’d feel submerged. I’d feel a growing pressure. I’d feel buried. I’d want to move out of their path. I’d want to swim to the surface. I wanted to push them out of focus, or bring them in to focus. I wanted them just to be anything but what they were. I associated them with grief, and loss, and sadness, and feeling alone, and a helplessness, and with an unknown, and with a resentment from what I knew, and with a resentment from what I had not had the chance to know. Which felt different from the unknown. As if one I was ill-equipped and inevitably stumbling my way toward, regardless of a constant, yet inconsequential, grasping for substance, and awareness, and understanding. And as if the other were fleeting pieces of my being. Pieces of who I was and who I should become. All fleeting from that same grasp. I knew I was losing pieces, but I wasn’t sure which ones, what they were for, how they worked with the ones I’d get to keep. All of it, it all found the cracks. And I couldn’t separate it. I couldn’t distinguish it. I couldn’t bring it into focus, or push it out of view enough. They were piercing. They drowned out and they blurred the edges of all. They would overwhelm me. And then just like that they wouldn’t. And I thought that was how it worked. I assumed the tide would change. But, I wish I had known I’d miss it when it did.

After a while, the emotions became less sharp. The edges still felt blurred, but in a more constant and droning sense. The colors blended. The waves were no longer inconvenient; they were no longer waves at all. They just rippled in and out every so often. They were similar, they were familiar, but they felt like echoes. Sounds, but distant and peripheral. The sparks changed. A sunrise. The bitterness of a pine needle. The sound of an aluminum boat skipping across a lake. A meadow. Wading into a stream. Cool neon-green backing in my fingertips. A contrail. Turbulence. The gleams in the flecks of my siblings’ eyes when they’d smile. The smell of dill. The view from 11,460 feet. My handwriting. A sunset. The smallest things. The closest things. The ripples became welcomed. But over time, those cracks tightened more. The blurriness remained, but the current lessened and what came in and out had slowed and had dulled and had greyed. There was no inconvenience. And the convenience brought guilt. I craved the sharpness. I craved the contrast. I sought it out. Whether from a picture, an envelope, a voicemail I’d saved, or Annie’s Song. I welcomed the tears. I welcomed the feeling. I welcomed the waves. I welcomed the focus

The diagnosis eroded a false sense of control. While that helplessness was uncomfortable, within the uncomfortable nested the comfortable. And rather than accept and live within the disorder, the helplessness stagnated into denial. I did not appreciate the diagnosis as difficult. I did not appreciate the difficulty of what followed. Providence became stationary, and the denial bled, eclipsing the recognition of the imperfect opportunities I still had. Without knowing, I let those opportunities slip by. And I withdrew. I impeded adversity from building character, instead allowing it to build a wall of regret. That wall took years to dismantle. In those years, I not only missed those imperfect opportunities, I missed the embracing their loss.

Ten years today. The cracks seemed filled, the emotions sanded. The memories out of reach, but only just. The blurriness feels too damp. There is no longer provocation in the sparks. And I can’t recall how or when I got to the place. I miss my father. I miss missing my father. I wish I had allowed myself to love more. I wish I had allowed myself to hurt more. I wish had known how quickly I’d get to this place.

 

 

52 People You Need to Meet: #23 Bridgit Fennell

Uncategorized

Leaning In

If I knew that GBM was the monster it is when my husband was diagnosed, I would have done things differently. I am not sure how most life insurance is written, but ours is such that if the doctor puts in the patient’s chart that they are “very seriously ill”, you can get benefits from the moment those words hit the paper. I really wish I had known to request half our life insurance. I didn’t know. The prognosis alone was terminal. Isn’t that, by definition, very seriously ill? If I had only known to ask to read his chart. If only I had known that was a possibility, we might have had more time and finances to dream big dreams. I have always told my children, “money doesn’t matter people do.”

As a family we were in “shock and awe” mode. It was a huge blessing to be a part of and to be across the street from the NIH where we had access to the experts in this field. It was three days after Christmas when he had his biopsy. It was my birthday when we got the diagnosis. As with all of my GBM sisters, there is a battle that never seems to end. It is a battle for life, for treatment to extend life, a battle for quality of life, a battle for time, a battle to find the words, a battle to stay close to keep those who want personal closure from stealing your time and your energy.

I lived in a bubble of “how can I get more time for the children and myself?” If only I knew the written diagnosis of “very seriously ill” could have opened doors to benevolent groups. They could have helped us find a safe way to see Europe – something he really wanted to do. If only I did what the nurse told me prior to the biopsy – take him for a romantic weekend at a posh hotel. I thought she had to be insane. Who could be romantic in the face of this unknown thing in his head? But we could have had just time to hug, sleep in the shape of a spoon, and to cry. We could do none of those things. We had two teenagers, home schooling, one full time job, one part time job, a house, three cats, three fish, a ballerina, and one angry child. If only I had the insurance money, or at least the half I could get at the onset. There was a lot of help out there if the doctors had the strength to write down the truth.

If I had that knowledge, I would have had help to get family and close friends to visit him without any expense to them. That would have helped me not have to dodge all the “whys” and the questions after some found out. If only I had the strength of spirit to put my husband in a tux and my teenage daughter in a gown. To take advantage of the offer to photograph them walking down the aisle in the hospital chapel. If only I had done that, she would have those photos and videos for the day when she actually does get married. If only I had done that. If they had told me he was very seriously ill on paper on his chart. I heard the words and read the internet sites.

If only it wasn’t so unbelievable to hear Glioblastoma Multiforme. It was my birthday after all. We were aware that the diagnosis was coming, and it took weeks longer than estimated. We prayed and hoped but as time passed we began to feel that heavy heart. If only I had the Facebook ladies to walk me through this. If only I knew how many have walked in my shoes. You feel alone in that moment. In a box, where all around you, people are talking, explaining, offering tissues. Time has slowed to a thick, “hard to breath and swallow” pace. Vision is blurred through tears that coat your eyes and fill and fall as they go.

If only I could have gotten my husband to start writing “those” letters early on while his mind was still sharp. If only I could have video taped his messages to the children. If only I could have bagged clothes he had worn in Ziploc bags to preserve his smell. If only I had believed from the beginning that he was passing – each day just one more closer to heaven. I have faith and hope in my Eternal Father. I know His Word is true. I know I will see my husband again.

I have cared for two other cancer patients before this. My grandfather moved in with us as newly weds and died in our home three years later from prostate cancer that metastasized to his bones. Ten years and 13 days later, his daughter, my mom, died in my arms after battling stage four colon cancer. Seven years and seven days from her passing is when we saw the MRI of my husband’s brain. If I had just looked back and pushed aside the shock and pain to know that his diagnosis would have no good outcome.

He was the love of my life. We should have dropped all normalcy and done whatever he wanted for as long as he could. If only I had known …..You can read, you can listen to others in the know….but you have to really know it yourself deep in your core. You need the strength of Samson, the resolve of a warrior, the brain of Einstein with the wit of Ben Franklin.

We are only human and made up of the way we were raised and the faith we have been taught. We hold fast to those truths. I would have done so many things if I had only known. I did the best I could within the parameters of what I was given. I guess my hope is that there was an abundance of love for him and he never lacked for love. I didn’t give him castles in England, Germany or France, but God has his castle in heaven and my love lives there. I will see you one day, my love, and much later our children and theirs…..Happy Anniversary, Ken. 06/08/1991. I will always love you.

Bridgit Fennell hands

52 People You Need To Meet: #22 Richard Haddock

Uncategorized

IMG_1073

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 .