How weird are you?

Dragon Master Foundation

This article makes a really good case for big data analytics in medicine. (Which is the heart of what we are working on.) It essentially says that we all have gene mutations making us each much more unique than scientists previously thought. It is really only through compiling vast numbers that we might be able to see some patterns emerge. 
This applies to cancer research, but it can also apply to all sorts of other medical conditions. Have you ever had a doctor tell you that your response to a drug shouldn’t cause the reaction it caused it caused in you? That’s kind of the same thing. A drug might do different things to you than to other people because of your unique genomic composition. If you’ve ever dealt with a reaction like this, you know how frustrating it can be. Now imagine your reaction is the difference between life and death. Pretty important, right?
We are laying the groundwork that will help people navigate these situations. Chances are, it will be you or someone you love that needs the answers. Help us now, so we can help you later.

The Top 9 Things You Need to Know When Your Child is Diagnosed With Cancer

David's Journey, Dragon Master Foundation, Uncategorized

carpeWhen David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

http://abc2.org/guidance/find-care – to find out which hospitals specialize in brain cancer – more on this later.

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.  I don’t think it is practical to expect a doctor that deals with many types of cancer  to stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

What A Rollercoaster!

Dragon Master Foundation

Like a rollercoaster as the last car eases over the top of the hill, we are hurtling forward after what felt like slow movement. The projects that we have been working on for the last three years are picking up speed. We have said all along that the way to change cancer research is through greater collaboration, and that message was loud and clear at this month’s Cancer Moonshot Summit at Howard University. There was an extremely diverse group of cancer research advocates brought together to hear Vice President Biden’s ideas and then work together to share our own ideas for how to bring about 10 years worth of change in the next five years. I think that idea might have scared some people, but we have already seen amazing advances using the Cavatica platform, so we know that kind of rapid improvement is possible. 

I know that there were many events held around the country, and we even hosted an event at WSU in Wichita, but many of you may not have had a chance to really see what happened during the day of the Summit. I wanted to give you my perspective on the day, and I hope it fills you with the kind of hope I have for the future of cancer and disease research. 

We started the morning with American icon Carol Burnett. She was delightful, as always, and the fact that she took the time to be there with us spoke volumes about how amazing this effort really is. Vice President Biden shared some of his frustration with us over costs and lack of progress, and we learned about some of the goals of the Cancer Moonshot initiative from Dr. Danielle Carnival, Chief of Staff and Senior Policy Director of the Cancer Moonshot Task Force. 

There were several other speakers, all of whom underscored the need for this important gathering and continuing effort by the community. We broke into work sessions for the morning, and I was placed in the “Solving the Technical Challenges to Unleash the Power of Data” group. That was no big surprise! 

I was incredibly humbled by the people in my workgroup. From industry veterans who have been working on making genomic data available like Warren Kibbe to bright, young innovators like Daniel Wagner who are challenging the way we look at and access the data. It was a fast-paced discussion that resulted in some great ideas.

We all returned to the general session for lunch where we could share ideas in a less-formatted way. I had the great pleasure of sitting with Dr. Charles Powell from the Icahn School of Medicine at Mount Sinai. Our discussions covered everything from rare forms of Mesothelioma to the latest imaging technologies. There’s nothing quite like watching a doctor get a look at new technology that will help him do his job more effectively, and I had the pleasure of watching that at lunch. It is simply amazing what we are gaining access to through new technologies. We got a great look at how Siemen’s is turning analog scans into digital data that can be used for comparative analytics. That will be great in Cavatica!

After lunch, we heard some great speakers who spoke about collaboration. I think some of these were available on the live broadcasts, and they are available for viewing here:

Then we were off to our afternoon workgroup sessions. My session was on “Data: To What End?” and our insightful speaker to start the session was none other than David Agus. 

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We talked about existing collaborations, and I finally had a chance to mention Cavatica, the sharing platform we have been funding. The attendees seemed a little stunned that we already have 10 hospitals not only sharing digital data, but biosamples as well. There was still some sentiment among event attendees that it would be hard to get scientists to share their pre-publication data, but the doctors at the 10 Cavatica institutions are truly putting children, and indeed all humans, first. This level of collaboration may be unprecedented, but it is the wave of the future and that was evident from the number of people looking to learn more about our platform. I was so honored to be able to share about the many hospitals and nonprofits who have come together to build this amazing resource. I believe it could be the model by which all future research is done. 

After a pretty exhilarating working group, we returned to the main hall to hear Greg Simon, Executive Director of the Cancer Moonshot. Dr. Adam Resnick and I got to speak with him for a few minutes after the event was over, and I felt like he was truly trying to pull together all the resources he can to make the end of cancer a reality in our lifetime. 

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The event ended with Dr. Biden and the VP Biden speaking to the crowd and asking for a prolonged commitment to working together for cures. I believe we have that commitment from everyone that attended this important event. 

We returned home to find out that we have been accepted into the Revlon “Love Is On” Challenge. This is an amazing opportunity, not only to raise much needed funding for the research platform, but also to raise awareness for the platform and explain how it can improve research around the world. You’ll be hearing a lot from us about this, but there are two things you can do right now to make a huge difference:

  1. Sign up for our Thunderclap to announce the contest. We’ve used this before, and it is quick and easy. You give one-time permission to Thunderclap to send out a message on our behalf. The message will ask people to support Dragon Master Foundation in the “Love Is On” Challenge. Sign up here: http://thndr.me/ukBgiJ
  2. Sign up as a fundraiser for the “Love Is On” Challenge. This will give you a fundraising page of your own, which will allow you to easily share the challenge with your friends and family. We are asking that everyone make a minimum $10 donation because that is what is needed to count for the contest. Those $10 donations could easily be turned into ONE MILLION DOLLARS if we win the contest. We’ve won social media contests like this before, so we know with your help we can do it again.

 

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

52 People To Meet Posts

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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