Sorry for the lack of blog posts lately. Lots going on, most of which gets posted to some form of social media or the other, but I wanted to make sure you non-social media folks saw this! We partnered with a class at the University of Alabama to make a video to help explain what Dragon Master Foundation does. We think they did a great job… let me know what you think!
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.
It occurred to me today that I don’t really get to talk to our supporters enough. Working on Dragon Master Foundation has turned into a full-time volunteer job for me, and most of the time, my head is down on one project or another. The work doesn’t stop coming, but I am so thankful to be in this position – doing this on behalf of cancer warriors. I wanted to stop for just a moment today, and let you know what your support has made possible this week. (And yes, it is only Tuesday!)
You helped give encouragement to a researcher who has developed a program around brain tumor tissue donation. We will be sharing a lot of his work over the next few months, but sometimes, they just need to hear that their work matters. As he told me about the extremely sacrificial gift he works with in his lab, I could hear the emotion in his voice. Tears gathered in my own eyes as I thought about the sacrifice our family has made, and I hope you all know that giving families this final way to make a difference is a truly valuable gift.
You helped gather feedback on the recently launched research platform, Cavatica, from a man who has dedicated most of his nearly 70 years on this planet to cancer research. He spoke with wonder in his voice of the things he is able to accomplish with this technology – things he never thought possible!
You helped give hope to a group of innovators who are developing a big data algorithm that can make treatment recommendations based on a patient’s DNA. They had been struggling to find the amount of data needed to test their theories, and now they have a source for their work.
These were conversations filled with hope, and that is what we are funding. When we started Dragon Master Foundation, it was because we had some audacious ideas about how to help researchers. Less than four years in, we have accomplished so many of the goals we set out to achieve. There is a real-time, open access platform where hospitals can share genomic and patient data. As I type, there are more than 15 hospitals sharing that data with agreed upon data standards. That alone is more than most people thought would be possible. Like the movie Field of Dreams, this is a real life “if you build it they will come” situation.
Which leads me to the best kind of problem to have. We can’t seem to fund the progress fast enough. We have delivered a tool to the nation’s top doctors who are eager to use it, but we need to fund the data to go inside. Putting the data into Cavatica means truly empowering precision medicine. It means we will be on our way to saving lives. If you’ve ever faced cancer, for yourself or a loved one, then you know that today matters.
There’s another great quote in Field of Dreams that applies to this situation. Archie Graham says, “We just don’t recognize life’s most significant moments while they’re happening. Back then I thought, “Well, there’ll be other days”. I didn’t realize that that was the only day.” It’s easy to let days slip by without taking action, but one day, there won’t be any more chances. We have to seize the opportunity now! Not because there won’t still be data to add tomorrow, but because there are lives being lost today. Every day is life or death to someone. So let’s work with urgency now to save more lives tomorrow.
When someone you love is diagnosed with a terminal illness, the gut reaction is to attack that disease. That’s certainly how we felt when David was diagnosed, and our initial efforts were focused on ending Glioblastoma (GBM) because that was the type of tumor David had. We were not involved in the world of research, and that seemed the most logical course of action to us. To strike back at the thing that struck at us.
We thought we knew how to help. As we learned more, we realized that we needed to help find cures for brain cancer as a group of cancers because there is a lot that can be learned by studying them together. We also felt like we needed to help that community as a whole because they are so underserved. A broader goal brought us into contact with many more researchers, and many more ideas.
- No one at Dragon Master Foundation gets paid.
- We direct all of our research dollars directly into this one project that is already speeding research. (One doctor said that it shaved a month and a half off of his typical tissue request workflow!)
- This project has the potential to help patients with cancer as well as a host of other medical conditions.
- Through this portal, research can be done on both adult and pediatric populations.
- It was listed as part of Vice President Biden’s Cancer Moonshot Fact Sheet.
- It is open access – meaning researchers don’t have to be part of a special consortium to access the data.
- It is cloud based – meaning the researchers don’t have to download petabytes of data that can take days to acquire. It also means they are not dependent on their hospital’s computational power because they can do their work directly in the web.
When 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!
Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.
There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.
This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.
You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016
I’ve always liked that word. Bliss. Just saying makes me breathe a little deeper. I’ve liked the word, but I don’t think I truly understood the phrase “ignorance is bliss” until David got sick. I had no idea how lucky I was that I hadn’t had to watch a loved one battle cancer. I had no idea that the word “Momcologist” existed. I had no idea that having my child die from cancer would just be the first in a long line of unspeakable tragedies that I would have a front row seat to watch.
Ignorance can be bliss, but it can also be what holds us back. As humans, we are held back because most of us don’t take the time to learn about disease and the obstacles facing medical researchers. I get it. Really. I was not a big fan of science or math in school, and reading anything other than Harry Potter at bedtime was not on my radar. But while I sat there doing my horrible Hagrid impersonation, a disease was lurking that would steal my son’s life. If someone had told me, I think I would have felt helpless. Cancer is a disease that has plagued the world forever. How could I possibly do anything to stop it?
But something happens to you when your child is threatened. Your bliss is shattered, so you start asking questions. You scream out to the world that it isn’t fair, and you get the echoes of countless other parents as your answer. The power to stop cancer lies within us. Ok, not me, most likely, but within someone. Maybe it will be someone in the oncology/cancer research field. Or maybe it will be some computational biologist or mathematician or astrophysicist. But it won’t happen if we sit by, blissfully ignorant that they need our help. THEY NEED OUR HELP. I don’t care what it is that you do, you can make a difference in the war on cancer.
There is an open access platform called Cavatica that will bring top quality cancer data to the people who want to find cures. It is free for them to see because hospitals and foundations are paying to make it that way. But we are spending our money on building infrastructure – not big marketing campaigns. That’s where you come in.
You are a single flame, but you could be the spark that starts the explostion (all props to Rachel Platten). Please tell people about Cavatica. Tell them that there is a new way to make discoveries for cancer research. Tell them that every type of cancer is important and that everyone deserves a chance to defeat cancer. The beta version is open to cancer researchers right now at Cavatica.org. Let’s make your moment of bliss the moment you hear that they have found a cure.
(Side note: couldn’t find a pic that illustrated my point with people, so this is a shot of my cat looking blissful.)
We are a few days into the Revlon “Love Is On” Campaign, and I’m super proud of our effort so far. For such a new foundation, we are really holding our own! I know a lot of our supporters are not on Facebook, so I wanted to do an update here on what you can get by helping Dragon Master Foundation in our quest to win a million dollars. You know, in case the warm fuzzies aren’t enough. 🙂
We announced that we will have a special “thank you” bundle for everyone who donates more than $150, and today, I’m going to tell you what that bundle includes:
- A Hope, Love, Cure, End Cancer Vinyl Cling – These are a great way to show that you support cancer research! You can put them on your car, on a dorm window, or the entrance to your business. Show the world you care!
- A Snazzy Awareness T-shirt – Ok, I know “snazzy” isn’t very descriptive, but the t-shirt will be changing each week. The first week’s shirt is a yellow gold with a grey imprint of our Hope, Love, Cure, End cancer design. It’s only available until Tuesday, September 20th, so be on the lookout for the next shirt after that. (Side note: If you donate more than $150 each week of the campaign, you get a new bundle each week!!)
- A CanPlan Planner – These are an awesome resource for people going through cancer treatment! It’s a leather hardcover design that just feels good to carry around, and the patient or caregiver that has it will feel better because they will have the information they need at their fingertips. This beautiful resource is available for purchase for $29.95 on their website (http://store.mycanplan.com/) or you can make a donation and get one as part of your bundle!
- A Two Pack of Dragon Snappets – This creative toy is a wonderful gift for kids battling cancer – or kids who aren’t battling cancer! Constructed of paper and rubber bands (no scissors or glue needed), the interactive toy lets them make their own dragon hand puppet and then have hours of imaginative fun while the dragon makes a satisfying “snap” sound when you close his mouth. Normally $9.99 (you can purchase extras here) this awesome gift will also be part of your bundle!
- The satisfaction of knowing you are making the world a better place. Really, the “stuff” is nice, but when it comes down to it, your donation will be helping us have a chance to talk to Revlon about open access cancer research and the need to break down the research silos that exist. It will be offering hope to patients with rare cancers who are currently told at diagnosis that they are terminal. It will put new and powerful tools into the hands of doctors and scientists who have dedicated their lives to finding cancer cures. That’s the very best gift of all.
You can donate to Dragon Master Foundation for the Love Is On Challenge by going here. You can donate directly to the foundation, or choose one of the team members who are helping us. Better yet, sign up to be on the team and help us spread the word! We need to be in the top 10 group by tomorrow to win the next challenge grant of $5,000, so every little bit today REALLY helps!
This week has renewed my faith in humanity. It’s so easy to sit by and watch the world slowly spiral out of control, but it’s really not hard to make it stand still, either. when you are told there is nothing more they can do for you loved one, be it your child, your mother or your husband, your world stops. But only for a moment, and then it starts falling. The more time that passes, the faster it goes. You’re hurtling toward an abyss with nothing to slow you down. With a lot of help, this week, we were able to slow that time down for a family who is so desperately looking for a cure.
Orlando is a sweet 11 year old boy who lives in our hometown. He has two sisters and a brother, and a family who loves him very much. And the local doctors told the family it was time for him to go on hospice. No more options. But that wasn’t acceptable to his mom, Lacy. She kept searching for a way to save Orlando. There are no guarantees in the fight against brain cancer, but she found a treatment that offers Orlando some hope. Some more time. But that treatment was half a country away.
Dr. Santosh Kesari has been working with brain cancer patients for his entire career. From Harvard to UCSD, he has gone where the research took him, searching for better treatments for people with brain cancer, specifically glioblastoma multiforme, which is what Orlando has. In the past few years, he’s had some success with a drug called Everolimus. Everolimus (Afinitor Disperz) got accelerated approval for subependymal giant cell astrocytoma is adults and children in 2012. Afinitor Disperz is the first pediatric formulation to be approved by FDA for the treatment of a tumor that occurs primarily during childhood. (In layman’s terms, astrocytomas turn into glioblastoma multiforme, so that is why this drug is a possibility.)
You can see some of the results Dr. Kesari has had via this article:
I know it seems like something that has been FDA approved since 2012 should be common knowledge, but the 5 year study results haven’t been out that long. (Five year study results: http://www.ncbi.nlm.nih.gov/pubmed/26381530) With brain cancer, you really need a doctor who is paying attention to the very latest studies to try and gain as much quality time for the patient as possible. Dr. Kesari isn’t just paying attention – he’s one of the ones paving the way.
But finding a possible treatment is just the first step. Dr. Kesari needs to evaluate Orlando in person to make sure this is indeed a viable treatment option for him. (All other labs and scans would indicate that it is.)
With brain cancer, the clock is such an enemy, but treatments like this give us real reason for hope. On Orlando’s behalf, we reached out to the community for help to get him and his mom to California to see Dr. Kesari. Thanks to Brad Pistotnik Law and a very generous offer of the use of a jet, we will be able to get Orlando and his mom to Santa Monica on Monday. We found out yesterday that there is enough room for Orlando’s sister to go, too, and we are so happy that she will be able to be there and give him moral support. They are only 15 months apart, and they are very close.
There will be additional expenses for this family while they are split up trying to care for Orlando and his siblings. Dad is staying in Kansas with the two youngest children, but he works so they need additional childcare. Orlando’s meals will be at the hospital, but there is no coverage for his mom and sister for food. Also, this is an “out of network” hospital, so there will be higher medical bills.
Dragon Master Foundation recently adopted a change in our bylaws to be able to help families in this situation. A brain cancer patient can be sponsored by a person or community, and donations can be raised to directly help that person. The first person to benefit from this new program is Orlando. If you would like to help the family with expenses, you can text the word “cancer” to 91999.
If you can’t help financially, please share this story and join our Thunderclap, an effort to help win a million dollars for cancer research. You can join the Thunderclap here: https://www.thunderclap.it/projects/44920-love-is-on-to-conquer-cancer
The day is finally here, and I am so excited! Today is the day the beta version of Cavatica launches to the cancer research world. A dream we had almost three years ago is coming true today. It’s not done. Technically, it will never be done. It will always be adding new patients and more information. Putting that aside, it isn’t as “done” as we want it to be. There is more functionality to add. There is plenty of DNA sequencing yet to be completed. But today, there is a pretty awesome database that is already unlike anything else cancer researchers have had access to before.
If you know a doctor or researcher, please tell them about this awesome resource. We will continue to build it out and make it better, but I think they will be blown away – even right now. (Say those last three words in your best Southern accent. That’s the only way to truly give them the emphasis they deserve.)
Here is the official press release:
The Children’s Brain Tumor Tissue Consortium (CBTTC) and the Pacific Pediatric NeuroOncology Consortium (PNOC) conclude Brain Cancer Awareness Month of May with the announcement of the Beta launch of Cavatica, a new cloud-based environment for securely storing, sharing and analyzing large volumes of pediatric brain tumor genomics data.
Cavatica will, for the first time, allow doctors, researchers and data scientists unparalleled access to pediatric brain tumor genomic data paired with a suite of analysis tools in a cloud computing environment that enables scalable, faster and more robust research. Upon its full release, Cavatica will host the largest standardized, integrated, and quality-controlled genomic database of pediatric brain cancer genomic data.
Working with Seven Bridges, a biomedical data analysis company, the eight CBTTC site members and 15 member hospitals of PNOC are further fulfilling their commitment earlier this year to the White House Precision Medicine Initiative (PMI) with the launch of the Beta version of Cavatica being announced today. The Beta release will be open for subscribed end-user input and will be iteratively enhanced by ongoing implementation of advanced platform features and deposition of additional data sets over the coming months. These datasets will include additional pediatric cancer supporting pan-cancer pediatric data analysis in partnership with additional consortia. including the SU2C-St. Baldrick’s Pediatric Cancer Dream Team.
Sign up for access to the Beta release of Cavatica is available for researchers and data scientists by going to cavatica.org.
For more information or to schedule an interview, please contact the CBTTC at CBTTCadmin@email.chop.edu