Dragon Master Foundation is on Amazon!

Several of our supporters have asked to support us via Amazon Smile, and we are happy to report we are now one of the official charities listed there. Simply choose us when you shop, and a portion of all your Amazon spending will benefit Dragon Master Foundation!!

Here’s the link:

http://smile.amazon.com/ch/46-2847688

What A Brain Cancer Caregiver Wants You To Know Before You Head to the Polls, aka People You Need to Meet: #45 Kristen Gauly

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What I wish I knew before my Mom was diagnosed with Glioblastoma Multiforme…

When brain cancer entered my life, I couldn’t have processed or understood at that moment that it was the cancer that keeps on stealing. It stole my Mom’s speech, her movement on the left side, her laugh, her smile, her personality, in short, it took all of her. And then, it came for us.

My brother, David, and I have been close my whole life. I’ve been blessed beyond measure in that respect. We endured much growing up; both of us faced major obstacles that required full family support to survive. It was always a comfort to know that my Mom, Dad and David would be there to face whatever challenge showed up next. I wish I knew how to prepare to for the day when crisis would result in the death of the leader of the pack. At thirty-six, it’s very difficult to think about how to face the rest of my life without my Mom.

My Mom’s fight with Glioblastoma Multiforme (GBM) was short. It began on Valentine’s Day of 2013 and ended on the afternoon of May 6, 2013. In those eighty-two days, she endured a resection, a stroke three days post resection, and three weeks of physical therapy which kept her from any sort of chemo or radiation. Mom’s left side was completely paralyzed thanks to the stroke, chemo, radiation, continued physical therapy and finally home hospice.

I wish I’d understood the health care system better. I wish I’d known that lack of funding, lack of research and no new treatment was the stark reality for those facing GBM. That death from GBM is the rule, not the exception. I wish I’d known GBM is considered “rare,” and that because it’s such a low priority, it’s considered an undesirable disease to study. I wish I’d known all of these things so I could’ve been prepared, planned ahead, advocated more effectively. But I didn’t.

I wish I knew before cancer that this… IS IT! Of course I know we only get one life; I wish I’d recognized earlier the importance of each day. I wish I’d taken more pictures throughout her life, that I’d spent more time with just her when she wasn’t sick. I wish a million things had been different, but I understand they simply are not. Mostly, I wish I knew how much the death of one family member can change the dynamic of the entire family. We aren’t the same. My Mom was the glue. She held everyone together, carried the Band-Aids and tissues in her purse for emergencies. No one tells you that cancer will change everything. Forever.

I wish I knew how just plain ugly cancer could be. There’s an unwritten rule among GBM folks: Do not compare any other cancer to this. When anyone does so, it is hard not to cringe. I’ve stood beside my dear friend while her Mom conquered ovarian cancer multiple times. GBM is nothing like that. My close friends, especially those who came to see my Mom, learned quickly this was a whole other beast. My Mom had the reasoning ability of a child post-stroke. She could say things that were cruel, such as when she told a friend that I pushed her out of her wheelchair and tried to kill her. Oh how that stung! Long gone was my sweet, smart Mama who loved others so very much. Nothing is quite as humbling as cleaning your Mom during a Depends change or feeding her soup and wiping her mouth.

I wish I knew how much others cared before cancer. People came out of the woodwork when they find out my Mom had GBM. They cooked, cleaned, prayed non-stop, gave gifts, and struggled for words that could possibly make my family feel better. My work family responded in a way you read about in books. They donated money in my Mom’s name to ABTA, covered my butt, and prayed non-stop. They took care of my cat, cleaned my apartment, gave me hugs, and listened when I needed to just spill my heart. My friends did all of this as well, but to see my work family just jump in without being asked told me quite clearly how they felt about me.

I wish I knew about post-cancer, post-funeral aftershock. I was ill-prepared for the after effects of cancer. I didn’t understand that my brain was processing all of these emotions for months after my Mom was gone. I continuously lost items, I forgot what I was doing, would find my keys in the freezer. I found myself continuing to panic with every incoming call and text, and sleep was hard to come by for months. Sometime around the five month mark, I started having nightmares. There are still days—over a year later— when I cannot remember what I’m doing or sleep through the night. While less frequent, the nightmares still love to resurface at the first sign of stress.

Lastly, I wish I’d known that all the things that fell apart did so for a reason. I’m not referring to my Mom’s death; her death is something I’ll never understand.  It is only now that I begin to recognize that sometimes you have to experience extraordinary pain from loss before you decide to change priorities. My Mom was my biggest cheerleader; her cancer helped me see my life much clearer. She was constantly telling us good things would come from her cancer. I’ve made connections with others fighting GBM, begun working to spread smiles through my charitable project for kids with, Brain Cancer Share Your Shirts, and I’ve strived to make my loved ones my top priority everyday. The more I delve into advocating, the more of those “good things” begin to surface.

Brain cancer has not changed my core values or beliefs. However, some parts of my life have been permanently altered. If you ask me which issues are most important to me at the polls in 2014, you’ll find my answers dramatically shifted from those I would have given a year ago. My first priority is now supporting those politicians, regardless of party, who support brain cancer research. It matters. I wasn’t always a major supporter of brain cancer funding, but then again, I wasn’t always a thirty-six year old living without my Mom courtesy of GBM.

Missing Patricia A. Gauly today, and always.

With Love and Hope,

Kristen Gauly

Editor’s note: If you would like to learn more about what Kristen is doing in her mom’s memory, check out her Facebook page: https://www.facebook.com/pages/Brain-Cancer-Share-Your-Shirts/160672910806397

Working Together for A Brighter Future

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 .

Do you watch The Voice?

Tonight I was watching The Voice and listening to these young people talk about pursuing their dreams. It’s a fun show, and I really get inspired listening to them talk about their goals. But today I got to sit in a room and listen to cancer researchers talk about pursuing their dreams. Talk about inspiring!! I wish that each of you could be there and hear what they have to say about their work.

I wish that the world chose to really get their priorities straight. I wish that instead of rock stars, we were watching cancer researchers. I wish that they got the recognition and the “buzz” that celebrities get. I know that this isn’t a switch that is likely to happen anytime soon, but still, I hope that the folks reading this blog will get excited about what I’m going to share.

In today’s meetings, we were asked to help put together a pilot program for the database they want us to build. Using their data and developing computational power, we want to pilot this program that will allow them to share data and work together toward a cure. They have asked us to start with DIPG and GBM – two of the most deadly brain cancers.

These are some of the smartest people I have ever met, and they are asking us for help. To be more clear, they are asking for YOUR help.

They can’t depend on traditional funding sources for this. Grant funding is very limited, and most grants aren’t structured for programs of this scale. The funding sources they have access to traditionally want to see results before they will fund programs.

So they need us – all of us – to help them find this pilot so they can show some results and get further funding. Every one of us has the power to do something big here. Really big. You may think you don’t have much to offer, but you do!

If you have read this message then you have the power to help us meet our goal. Please share this blog. Then think about ways you can make an impact in your community. Can you hold a bake sale? A car wash? A Zumbathon? Whatever it is you like to do, invite some friends to do it with you and raise a few dollars.

If we all do that, we can make thousands of dollars to help these researchers change the way research is done. This is bigger than me. It is bigger than you. It is the sum of all of us, and together we can change the world!

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There Are No Easy Days

I believe it is the Marine Corps that says, “There are no easy days.” They know what they are talking about. They are either at war or preparing for war. Sometimes it feels that way when you are the parent of a child with cancer. Or when you have lost your child to that disease. There are no easy days.

Yesterday, I watched in awe as my friend, Vashni Nilon, came to a 5k without her sweet daughter, Lucy. She came because they had been building this team for months, and even though Lucy died just a few days ago, Vashni knows this battle is not over.

This team of walkers grew from about 20 to about 150 because of the efforts of two moms and a dedicated staff. There were doctors and hospital staff sprinkled throughout the crowd. Everyone doing their best to make a difference.

One doctor shared with me that he had been up by 4:30 am each day this week so he could work on grant proposals before heading to the hospital. Another’s wife mentioned that not only does he respond to patient needs in the middle of the night, but also was on call for lab equipment failures. (Tumor tissue samples are precious and he takes personal responsibility for their safety.)

A staff member shared that her kids are “regulars” at the hospital because she has been working 7 days a week. There is no lack of passion here, but yet our children are still dying.

So what do they say they need? More computational power. More data storage. More manpower to input the records. What does that really mean? More funding.

We are in a day and age where computational analytics could be a powerful tool, but most researchers don’t really have access to that kind of power. Dragon Master Foundation aims to change that, but we need your help.

We need a nationwide effort to raise money for a research database. There are currently four leading children’s hospitals participating, and we want to add more! Please get involved today, and help us give everyone hope for easier days.

You can make a tax deductible donation to Dragon Master Foundation by clicking here: http://www.dragonmasterfoundation.org/get-involved/#donate

Or by mailing a check to:
Dragon Master Foundation
8201 East 34th Street N., #801
Wichita KS 67226

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People You Need to Meet #44: Stephanie McMillan

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Stephanie’s family

What I wish I knew before my child was diagnosed with brain cancer??

I wish I had known how precious time was. I wish I had realized how little that mess had mattered, how quickly time passes by, how precious every sound from his lips could be.

Though his whole life we were on the go, enjoying life, but it wasn’t until my son was told that he mostly likely wouldn’t survive this that we really began to live. October 4, 2012 will forever be etched in my mind as a day that the world stopped turning at the same rate of speed.   From that day, life became before and after.

Before Richard was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) we spent our weekends going to the park, visiting the local lake, swimming from sun up to sun down. I wish I had known how precious that time with him really was. I wish I had soaked up every minute. The thing is, as parents, we tend to busy ourselves. Even when taking our kids to a park, we use that time to socialize with other parents, or to send those all so important work emails. Looking up every so often to make sure we can spot our child, then right back to what we were up to. How many times did I take my kids to the park only to sit on a bench the entire time?   How many of our trips to the pool or lake did I lay on the side line the entire time working on my tan rather than splashing around with them? Yea, I got up and played with them, when I got too hot to continue lying there, and needed a break from tanning my skin. There were many times that I did this with friends and spent more time laughing and cutting up with them, rather than playing with my kids. If I had known then that my son would die at 9 years old, I have to believe that I wouldn’t have cared one bit about my tan lines, or sending that work email. I have to believe that I would have gotten off my butt and played with my kids. I would have spent every single second soaking them in. I would have let the dishes lay in the sink and played with them before bedtime.

So often in our busy lives we wake up determined to keep ourselves on schedule. We get upset with our children when they take too long to put on their shoes. ‘UGH….get up, I’ve called your name three times… if I have to call your name one more time you’re going to be in trouble.’ I have to believe that had I known that our lives would change completely when my son was 7 years old, I would have spent every morning waking them up slowly with snuggles. Giggling while we played games to get dressed. I have to believe that I would have gotten up earlier to make sure we had time for things to go wrong, or us to fall behind schedule. To enjoy that morning rush with my kids rather than just march them into the day with one …two…. three, let’s go.

As adults we become so consumed with our careers. I wanted to travel every chance I was given with the company I worked for. I was working hard to hopefully become a District Manager some day. Had I known when I was busting my hiney to climb the corporate ladder that my life would change, I would have left work at work. How much money I earned wouldn’t even matter anymore! So often I brought it home with me. After working 12 hours, I’d come home and take calls or send emails, pushing my kids to the side so that they could entertain themselves. I have to believe that if had I know that my son wouldn’t ever turn 10 years old that I would have worked fewer hours, and I would have let work handle itself when I was home with my family.

I ask myself often, why did that matter so much to me? Did they miss me when I left? You see for me, it wasn’t my business I was working to grow. I was working in a corporate job that I loved, but while I want to believe I was a valued employee, I was just a number and quickly replaced. Life moves on, and they needed the job done. Meanwhile, what was waiting on me at home was a position that was irreplaceable. I was the CEO of the most important job in the world. However, I didn’t place that job description high enough in my list of importance. Don’t get me wrong, I needed to earn a living. I needed to pay for the fun I took my kids to enjoy, but I, like so many other parents, put the value of the corporate ladder before the quality of time my family got from me.

Before my son was diagnosed with brain cancer I wish I had realized how little the opinions of others really meant. I’ve always worked hard to be a likeable person and be easy to get along with. When relationships failed, as they often will, it would break my heart. I would spend so much of my energy worrying over what went wrong and how I could have changed the outcome of that relationship. If a “friend” had the wrong idea about who I was or what my agenda was, I spent way too much time trying to get them to see things from my perspective. I wish I had known none of that would matter. You see during my son’s fight for his life, we made his journey public. I wanted people to see what life was like with living with a child with cancer. By doing this I made myself and family vulnerable to the opinions of others. It didn’t take long for people to question my agenda and say hurtful things. I wish I had known then how little those people’s opinions mattered when it was all said and done. People will tell you what you should do, or how you should do it. They may question your every move. What I am glad that I know now, that their opinion of me is none of my business. All that matters is that everything I did/do is for my children.

My son died one week and three days shy of his 23rd month anniversary from being diagnosed with DIPG. He beat the odds and survived much longer than initially expected. From the moment he was diagnosed until the day he died, every ounce of me was poured into him and my other children. I will forever be a person who doesn’t care if there is a mess laying around in my floor, as long as I am taking that time and focusing on what is important….my family. I am thankful Richard’s fight taught me these things. I wish I hadn’t had to experience childhood cancer to learn that lesson. Please, hug your children. Please evaluate your life, and think, if your world was flipped upside down today, what would you forget about in order to be what your family needed? Every minute counts in life, and I promise you, if you’re aligned as you should be, when it’s all said and done all that matters is your family.

People You Need To Meet #43: Karin Forbes

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What do I wish I knew before my husband was diagnosed with brain cancer? I’ll tell you what I’m glad I didn’t know, because these things are too horrible to know in advance, and knowing these things wouldn’t have helped in this horrific journey…

I certainly wouldn’t have wanted to know how quickly he would  lose his ability to talk, to move, and to eat or drink.

I wouldn’t have wanted to know that he may not have been able to see or hear.

I wouldn’t have wanted to know that he would be told no hope, that there was nothing anyone could do.

I wouldn’t have wanted to know he would be suffering seizures, or about the many, many hospital visits.

I wouldn’t have wanted to know that I would have to make life decisions for him that doctors didn’t trust he could make.

I wouldn’t have wanted to know that that my love who didn’t take so much as an aspirin, would be taking long lists of ever changing  medications.

I wouldn’t have wanted to know how this strong man, who took such good care of himself,  would bloat, and have reactions from medications.

I wouldn’t have wanted to know all the nursing skills I would have to perform with on the spot training.

I wouldn’t have wanted to know how my heart would be ripped apart watching the man I loved suffer and wither.

I wouldn’t have wanted to know that I would see his beautiful eyes fill with so much sadness as he knew he was dying.

I wouldn’t have wanted to know that his life would be over long before his death.

I sure wouldn’t have wanted to know I would lose my husband, my children’s father, my best friend, my confidant, my everything, my world, five months from diagnosis.

I wouldn’t have wanted to know we would never hear, see, or feel anything about him,  ever again.

I wouldn’t have wanted to know the enduring pain to my very core.

I wouldn’t have wanted to know that this man who worked hard every day of his life, would never see one day of his retirement, or one of our retirement plans come to be.

I wouldn’t have wanted to know that our family life as we knew it, would be soon be over.

I wouldn’t have wanted to know my children’s pain from the loss of their dad.

I wouldn’t have wanted to know that some would  add to our pain with words or acts or lack of either.

I wouldn’t have wanted to know the greed some would have after the death of my beloved.

I wouldn’t have wanted to know how some would disappear after his death.

I wouldn’t have wanted to know that my future entailed widow fog and being unable to concentrate.

I  wouldn’t have wanted to know that I would lack desires and no longer love life.

I wouldn’t have wanted to know that I would have post traumatic stress.

I wouldn’t have wanted to know that my health would suffer, and I’d be badly hurt in an accident, or that accidents are common among the grieving.

I wouldn’t have wanted to know the long duration of grief,  and depression I would endure.

I wouldn’t have wanted to know because I needed hope to fight for him. If I had known these things, I would have been too distraught  to function. If this horrific  journey had been given to me in black and white print, I still could not have known the depths of this nightmare. I had to believe in a miracle; I had to have hope.

How I wish that I and the others who suffer had never heard of brain cancer because there were no such thing.

There is one thing I wish I knew…
The one thing I wish I knew was that I didn’t have to be so alone with this. There are online groups of people who share this grief, some are now fighting this monster. They give each other encouragement, love, and knowledge that I so needed in this terrible time.

I now belong to a group of women caregivers who are all on,  or have been on this same terrible road brain cancer takes us down. It’s heartbreaking because I know what they are going through.
I also know that unlike me, they aren’t alone because we band together for each other. We are special Warriors who all wish we had never been in this horrific battle.

Did I learn anything on this horrific journey?
I already knew the depths of our love, and that we would die for each other. I knew of his strength and his heart. We had found out long ago that material things just don’t matter. How blessed we were to have each other and such a deep love! We already cherished every day together.
We didn’t need illness to bring that realization.

I learned that GBM is horrific beyond words, not at all rare, and a thief of the very worst kind.

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