A Significant First

Wilson's happy cookie

You make note of many firsts. Baby’s first steps. First day of school. First job. First anniversary. They are almost always happy occasions. But today I am trying to find a way to  honor a first that is not happy. It’s heartbreaking and yet it means so much that I can not let it go by without acknowledgement.

Yesterday, I found out about a brain cancer warrior that has moved on from this world. His family and friends will have to learn to live without his sweet presence every day. It is a first for me because they have asked that memorial donations be made to Dragon Master Foundation. This is the first time that I’m aware of this happening, and I don’t know what to say. How do you thank someone for such a selfless gift? They’ve wrapped up all their love and lifted it as an offering in honor of Wilson. They believe in us enough to put it out there to the world that they want his life honored through contributions to an effort to save others.

This is such a significant thing to me. I’m humbled. I’m in tears. And I’m so very determined to put an end to cancer. For Wilson. For David. For all the warriors still in this fight. We won’t let you down.

For Auld Lang Syne

I have an app on my phone called “Time Hop”. It goes back in time to year’s past and pulls out photos from your phone or Facebook to show you a little of your personal history. Today, one of the photos it showed me was of my Facebook statuses from 2010. What struck me was how happy they all were. How thankful. How EARLY in the year. You see, all of the statuses in the picture were from the first eight months of the year. David was diagnosed with cancer in month 9.

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In hindsight, I always wonder if I was thankful enough before cancer entered our world. If I appreciated my kids enough. If I knew how blessed we were in spite of our hardships. Then today I saw this recap of my year before cancer. There’s no doubt that I knew what my blessings were. It wasn’t all sunshine and rainbows, but I reveled in them when they appeared.

What really struck me, though, was how blissfully unaware we were. We had “normal” problems. The kind that you can pull yourself up by your bootstraps and get through. And then, David got an excruciating headache that led to three weeks in ICU and brain surgery. All the while, we believed that we would just pull together as a family and get through it.

But cancer isn’t always like that. Yes, being positive and fighting hard is important. I believe that it can make a huge difference in treatment and survival, but it is no guarantee. Cancer sneaks in unexpectedly and steals away your normal. To me, that is the most alarming thing. There was no warning.

In some ways life is just like that. You never know what’s around that next curve. The end of the year seems like a good time to look back over those curves and smile where you can, and cry when you must. More importantly, it’s time to look ahead to see what you can do to smooth the curves in the coming year, both for yourself and for those around you.

For me, looking ahead means finding innovative ways to fight cancer. I know David is looking down on us urging us forward. I know that he would see each life as precious and worthy of the fight. As we enter 2015, I hope that you will join us to make a positive change in the world of cancer research.

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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