No One Left Behind

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May was a whirlwind of activity, and while many exciting things are happening, I think it is important to keep in mind just how very far we have to go. We are at war with cancer, but we are forgetting one of the most important rules of war: protect your children first. If you think about it, in dangerous situations, we always protect our children first, but that isn’t true of battling cancer. Funding for pediatric cancer research only gets 4% of the NIH budget.

At Dragon Master Foundation, we don’t wait for government funding to do the work that we believe in, but we know that our work could be done so much faster if there was government funding behind it. That’s why this message from Kids v Cancer is so important. Take a moment and give it a read.

 

Sometimes Choosing A Cancer Treatment Isn’t The Toughest Decision

52 People To Meet Posts, Uncategorized

 

Addison

Addison Adams

 

Hearing that your child has cancer sends your world into a tailspin. Hearing that they have a lethal form of brain cancer that really has no treatment path is devastating. It’s the kind of thing people carry with them for the rest of their lives.

One form of brain cancer, DIPG, has been had very few treatment advances in decades. A big part of the reason for this is that so little is known about how the cancer develops and grows. Typically, biopsies are not performed because of the tumor’s brainstem location, and what scientists do learn is often from tissue taken after a child has passed away. That is an issue, too, because it is a difficult conversation for most medical practitioners to have with these already vulnerable families.

We reached out to a very generous family who donated their daughter’s tissue to research, and they agreed to share their story. We hope that it will inspire others to think about whole brain tissue donation.

Interview with Kindra Adams, mom to Addison

When did you first start thinking about donating Addison’s tissue? 

Addison’s father and I knew from diagnosis that one way or another Addison would be tumor free.  We learned more about tumor donation after a Facebook page for Katherine The Brave posted about it.

Yes, Katherine the Brave’s page is well known in childhood cancer circles. Did you discuss the donation with people in your family and friends?

Yes, we discussed it with family and friends.  Everyone seemed very supportive of our decision.  We were going to do it no matter what, but it helps to have everyone on board.

Do you wish you had known more about tissue donation sooner?

Yes, it seems like information on donation is pretty hard to find unless you know about it already.  If it wasn’t for Katherine’s page, I’m not sure we would have known anything about it.  I’m also not sure we would have been real receptive to it if someone approached us. That’s what makes it more difficult to get the information out there.

What were your biggest concerns around donating her tissue? My biggest concern was that it wouldn’t grow.  That after it was removed and transported, that would just be the end.  I really wanted it to survive and hopefully help someone.  I know it might sound unusual, but I was also worried about how it would affect her appearance.  We wanted to be able to have an open casket, and it was nice to know that the incision wouldn’t be visible.

As a mom of a child who died from brain cancer, I totally get that. I don’t think it is an uncommon concern at all. Parents want to protect their child in every way, and this is no exception. Who answered your questions about the process? Dr. Monje .  We had been in contact prior to this because I was looking for clinical trials for Addison.  When I finally sent her the e-mail about donation, she set up a time and called me.  She explained everything, and we stayed in contact.  Even to this day, I can send her an e-mail and see how everything is going.

Dr. Monje’s lab contributes data to the open access data platform called Cavatica. Although Dr. Monje’s lab commits to putting 75% of the tumor tissue they receive into this platform, it is possible that Addison would have been part of the 25% that did not get shared. You were able to verify with Dr. Monje that Addison’s tissue was indeed shared, though, which is really cool.

Did you know much specifically about what her tissue might be used for?  Yes and no.  I know at the time of our phone call, Dr. Monje gave me lots of information. Unfortunately, my memory retention hasn’t been the best lately.

Yes, memory retention is frequently a problem during the grieving process. I definitely had some issues with that, too. How does in make you feel knowing her tissue is in the open access database, Cavatica?  Honestly, I’m thrilled that Addison can be a part of something this important.  We have learned that Addison is in the 20% of DIPG kids that are lacking a particular mutation so that makes her part in Cavatica even more important.

As a parent who also has a child with data in Cavatica, I can say that it does give you some comfort to know that their tumor tissue may help save another child’s life one day. 

Cavatica is the platform for data sharing that will be used to empower an upcoming DIPG trial being launched by the Pacific Pediatric Neuro Oncology Consortium. You can read more about that here.

 

 

3 Changes Coming To Clinical Trials

Lessons Learned, Uncategorized

Clinical Trial Changes

If you have a “rare” cancer that doesn’t have a great standard of care, chances are you will be offered a clinical trial. To the general public (which is who we all are before that diagnosis is presented) clinical trials sound like a scary thing. To a cancer patient being told there is no cure, a clinical trial is a lifeline being tossed in a stormy sea. IF you catch it, it MIGHT help save your life.

So how do you pick a clinical trial? Well, first you have to find one that you qualify for. We’re going to assume that you have a doctor who is really helping you and is presenting you with some choices. So you have a couple of clinical trials and the “standard of care” to choose from. How do you decide? Right now, it’s a guessing game, but all of that will be changing rapidly as technology and open access data become more commonplace in the process.

  1. You will have more concrete data to help make decisions. I have seen some pretty impressive technology being developed by Clalit Research Institute in Israel that will help a doctor walk through a list of weighted questions with a patient that will help them make this difficult decision. (That program was developed using data made available from a clinical trial, and as more data becomes open access, I think we can expect to see more applications like this developed.) Each patient will be able to rate a list of possible side effects and based on their feedback, an algorithm will provide guidance on particular trials.
  2. You will know more about what “successful” patients look like. As data begins to become collected in one place, it is easier to compare patients on a genomic level. Researchers will be able to compile profiles of successful patients to help determine who has the greatest chance of success on a trial. My son participated in a clinical trial where one patient was doing really well. We had no idea if David would have the same results because there was very little data to tell us why the first patient was successful.
  3. The system will start to find you. Right now, clinical trials are found largely by patients and doctors sifting through websites like clinicaltrials.gov to find possible trials. In the future, doctors will enter your information into the computer, and then you will be pre-qualified based on your exact diagnosis and personal information. The computer will then present a list of potential trials that you can choose from.

This all might sound a little too good to be true, but the fact is, the infrastructure is already in place. Cavatica.org is an open access research platform that Dragon Master Foundation and others have been funding for more than three years now. It houses a patient’s full genome and biosamples from the patient, and sometimes the patient’s parents. It also links to the patient’s clinical records so we can have a longitudinal view of that patient. I believe it is the single most complete picture of a patient you can get, and we are working hard to make it available to everyone. (At the moment, it is largely working with pediatric brain cancer data, but the platform is built to expand as funding becomes available.)

Data like this can take a lot of the fear and guessing out of treatment, and it should lead us to more successful treatments and cures. We are on the cusp of a meaningful shift in cancer care, and I’m excited for this to start really impacting patients lives.

Commitment vs. Devotion

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UncleJerry&AuntDonnainDoorway

I was a child when my uncle Jerry died. I remember him through that lens… they are all fond memories. He was the jokester in our family, always ready with a harmless prank. And they were harmless, that was part of the appeal. You could trust him. He didn’t go too far.

He was a successful businessman and well loved in the community. He died of a massive heart attack at age 44. His funeral is one of the first I ever went to. Watching my grandmother and aunt (his wife) deal with his loss was my first real lesson in grief. There was no crazy wailing, although I’m sure  they wanted to rage out. My aunt was fairly stoic. Not cold, just stunned. My grandmother cried, and I remember a cousin telling me that she heard our grandmother say, “I just want you to open up those big blue eyes and say, ‘Mama’ “ as she stood over his coffin.

If there was a family member who didn’t cherish him, I was unaware of it. He was my mother’s brother, and I guess in some families my aunt might have drifted away, but not in ours. She was a fixture at my grandmother’s house for decades – until my grandmother died.

When I got a little older, my aunt would often include me and my cousins in trips to her beach house. (She was not the only generous family member who did things like this, but this is a story for her.) I learned how to fold a fitted sheet on one of those trips. I ate cauliflower for the first time. I had a sundae with both chocolate AND caramel on it. The best kind of memories were made.

At some point, years after my uncle had died, I asked my aunt why she wasn’t dating. She was so fun and such a vital person. She told me that my uncle was the only one for her, and then said, “Do you remember his laugh?” She had such a great smile on her face when she said that, and I kind of knew then that what they had couldn’t be replaced. She might find a substitute, but she was content with her memories of him.

As it turns out, she never married again. I think she has been happy. At least she always seems that way to me. Her two daughters gave her lots of grandchildren, and she has always remained as active as her circumstances would allow.

I thought of her this morning. Of her relationship and the example she set with how she has lived her life. And it came to me that she was in a devoted relationship with my uncle. So many settle for “committed”, when we should really wait for devotion.

What’s the difference? Well, the dictionary says that committed means “to pledge (oneself) to a position on an issue or question; express (one’s intention, feeling, etc.)”.

By contrast, devoted means, “zealous or ardent in attachment, loyalty, or affection.” (Don’t confuse this with obsession… that’s a whole other story.)

But to me, devotion is when your unconscious thought leads you to care for someone. It’s the way a good parent feels about their child. I am truly blessed to be in a devoted romantic relationship, and people ask about it all the time. I’m not sure what they see, but they can tell it’s different. I struggle to put into words how it feels because it always sounds arrogant, and it is not a boastful thing. However, so many people settle for committed, that I wanted to try and put it to words for you.

• Love is preferring one person’s laugh to everyone else in the world.
• Love is fun. It’s like seeing a blockbuster summer film that no one else has seen yet. It’s so amazing and awesome that you want everyone else to experience it, too.
• Love is taking care of their needs before your own – not because you are being nice, but because they are the first thing on your mind.
• Love is 100% reciprocal. (I used to think that one person always loved more than another, but I don’t believe that anymore.)

• Love is not Ross and Rachel from “Friends”. If one partner is acting like Ross, there is no way that relationship will work long term without the other person being truly miserable.
• Love is not work. I’m probably going to irritate a lot of people with that statement, but I owe it to the young people I know to be honest about this. When you are with the right person, it really isn’t work. I know it sounds corny, but you really want the other person to be happy so much that you find the compromises pretty easily and quickly.
• Love does not control you. It won’t tell you who to choose as friends or how to spend your time. (“Honey-do” lists not withstanding.)
• Love builds you up. I can list a million reasons why I love Richard, but the most shocking thing about our relationship is that he can also list a million reasons about me. We both tell each other those things all the time. I joke that I have to harass him a little just so his ego won’t be too big, but I adore him and he knows it.
• Love isn’t jealous. Not just of another person, but of anything. We don’t worry about each other’s loyalty. We both have healthy relationships with friends of the opposite sex. Neither of us are worried about those relationships because we are devoted to each other.

There are lots of other things that love is or it isn’t. If you have a doubt in your mind, then that probably isn’t the real thing. I know that is harsh. I’m sorry for that. I  know a lot of people in committed relationships who have built happy lives for themselves, but it isn’t the same as being devoted. If you still have that choice in front of you, my wish for you is that you hold out for devoted.

What is Your Field of Dreams?

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Field of DreamsIt 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.

 

Home Checklist for Long Hospital Stays

Lessons Learned, Uncategorized

plain-white-house

We saw a checklist for things to do while you are on vacation, and it made us think of how many families end up out of town for treatment for long periods of time. If you are like us, those times may come rather unexpectedly! So if you are a friend or neighbor, this list might offer some good tips on things you could offer to do for a family that is gone for medical treatments.

  1. Set up a schedule for lawn maintenance. For families that don’t already hire out this service, setting up a system for them will be a big time saver, and may keep them out of trouble with the homeowners association.
  2. Check on their trash & recycling. These bins may fill up even while they are gone. We had people feeding our cats, taking out the litter, cutting the grass, etc. If those jobs are being done by neighborhood youth, they may not think to take the trash and recycling bins down to the street.
  3. Turn the water heater to vacation mode. Believe me, water heaters are the last thing on your mind when you have a sick loved one, but this could save them on energy costs. Most families facing long-term illnesses are counting pennies, so this is a nice way to help. Just make sure you leave a note in a prominent place to let them know that you changed the setting!
  4. Ask if they would like the water turned off to their house. During the winter, this may make a lot of sense, but not if they have pets that are still in the house. Again, if you do this, make sure to leave a prominent note. Even though they approve the action, they may not remember doing so by the time they make it back home.
  5. Ask if they would like you to randomly check on things. If there are no pets in the house, it may sit empty and quiet for long stretches. Leaving a random light on or parking a car in the driveway can give the appearance of activity that may ward off thieves. If it is winter, shoveling the walk definitely shows activity, and could be a nice touch if the family does get to come home.

Do you have any other tips? Please share them below.

 

Out of Sight, But Not Out of Mind

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outofsight

A long time ago, I had the pleasure of working on some projects with Sid Brooks. Sid was a simple man. He spent decades of his life in service to others, first in the military, then in what many would call a “thankless” job. He was the equipment manager for the San Diego Chargers when I met him. Surrounded by people making millions of dollars a year, Sid quietly did his job, and treated everyone as if they were the most important person in the world. You might expect him to treat the football players that way, but he also treated the receptionist with the same respect. Every person he encountered, from a waitress to the owner of an NFL franchise, was given his full attention, and as a result, he was well loved throughout the NFL.

He came to mind this morning as I was trying to think of ways to enlist the help of folks who might be reading this. You see, Sid made everyone feel important, but all too often, we only take the time to thank the most obvious people in our lives. In the cancer world, the doctors and the nurses get most of the thanks, but what about the folks working in the lab to make sure your samples are handled properly? Or the bioinformatician who makes sure your data is just right so that one day they may find a cure? Or the administrator that keeps everyone on track? What about the janitor who keeps everything spotless so that everyone else can focus on their task at hand? Those people often go unnoticed, and worse yet, unthanked, even though their jobs are pushing the world of science ahead. If not for them, we wouldn’t be in this race to find cancer cures. If not for them, there would be less hope.

So I propose this Valentine’s Day that we all show them some love! Please send those folks a message and let them know you think they are #OutofSight – in a good way! You can send a note directly to someone you may have come into contact with, or you can just use the hashtag and send your message out on the internet. Here are some sample messages:

This #ValentinesDay, I want to give credit to those #OutofSight workers who make my hospital stay go smoothly! You’re the best!

You may be #OutofSight, but I know there are lots of people working to find cancer cures. Thank you!

You may be #OutofSight, but you are still on my mind. Thanks for working behind the scenes to make the world a better place!

You can add other meaningful hashtags, like #btsm (brain tumor social media) or #endcancer or whatever your community normally uses. Maybe more folks will see it and share the positive message.

And for all of you reading this, I want to take a moment to thank YOU. Being an advocate for someone with cancer is sometimes as simple as sharing a message.

Even Now, Life is Good

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copy-of-what-keeps-me-up-at-night

Life is good. I tell myself that each time I put on my son’s way-too-big-for-me sweatshirt with that saying. David wore it all the time – even during his cancer treatments. When he died at age 18 from brain cancer, it was one of the many things I kept. That sweatshirt is part of my living memorial to him. A constant reminder of blessings in spite of hardships.

David was genuinely one of the kindest people I’ve ever known. We didn’t teach him to be that kind. He just was. He always had a smile and a hug for everyone. He made the people he met feel important. He was smart and funny and weird. He was most proud of being weird. He would have turned 23 on January 15th, a day we have dubbed “Hug Like David” day, as a gentle reminder to love the world twice as much in his absence.

It is a rare day that I don’t shed a tear or two over David, but I’m not depressed. Those tears are more often from a happy memory as a sad one. They remind me of how deep and everlasting love is, and that the physical world is merely one place that love can manifest. David no longer has a body on this planet, but I feel his spirit everywhere.

Love that deep can drive a person, and it drives me every day. I can almost hear David’s voice asking me how it’s going. What did I get done today? When I’m sad or sick, it is his voice that pushes me to do just a little bit more. I can’t sit around feeling sorry for myself when David left me such a good example to live by. Throughout his cancer treatment, he greeted the world with a smile. He didn’t complain. He just did what had to be done.

You see, David wanted to help find a cure for cancer. Not for himself, but for others. His type of brain cancer has no cure, and treatments typically only extend life by a few months. David knew that an answer probably wouldn’t be found in time to save his life, but he volunteered for clinical trials because it might help save someone else.

In his memory, we founded Dragon Master Foundation, and we work diligently to bring the world of big data and its analytical power to cancer researchers. We were working on breaking down silos long before the words “cancer moonshot” were uttered. Along with other foundations and hospitals, we helped launch Cavatica.org this past fall. It is a place where researchers can work together and share genomic and clinical data. It is a level of cooperation that is unprecedented in the research world, and I think that is the part David would have liked the most. I can’t say that we have saved any lives yet, but I’m confident that we will.

Life is hard and full of unexpected twists and turns. Life is difficult and bittersweet. It can knock you down, but it will show you a different perspective from your knees. My son died, but he left a legacy that will save others. Life can be very, very short, but yes, life is good.

 

 

Giving Tuesday

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Today is #GivingTuesday, an international day of generosity that empowers individuals to make donations following the shopping frenzies of Black Friday and Cyber Monday. Last year, nonprofit organizations collected more than $116 million from donors around the globe!

One of the most popular components of Giving Tuesday is the #unselfie, a picture people take – not of themselves – but of a message of giving. Usually, the person is in the picture, but they hold up a sign that covers their face. In honor of Cavatica’s launch, our #unselfie picture this year is this:

moonshot-print-1

moonshot-print

You can share the .jpg image on social media, and there is a .pdf at the “moonshot-print” link if you want to print it out. Please invite your friends to share their #Unselfie for Dragon Master Foundation to help us find cancer cures and empower medical research through Cavatica, the open access data sharing and research platform. Driven by a network of top hospitals, Cavatica was just recognized in Vice President Biden’s Cancer Moonshot Fact Sheet and is poised to change the way medical research is done. Your donations will speed the development of what is basically an information superhighway for cancer researchers.

You can donate here via Crowdrise, which will earn you Crowdrise points that can be exchanged for cool t-shirts and gear. It will also give you a brick in the Crowdrise Giving Tower that they are building today to help visualize the giving on #GivingTuesday.

 

 

Who’s Really the Enemy Here?

David's Journey, Dragon Master Foundation, Uncategorized

hawking

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.

We were energized by some of the sharpest minds in research, and realized that the kind of analytics we wanted to do are really best empowered by studying all types of cancer, and even other diseases, in tandem. The most cutting-edge research points to cancer being mutations in genes and studying the mutations, regardless of the starting point in the body, is leading to new research pathways.
Cancer is a disease that has plagued humanity for generations. In all that time, we have mostly dealt with it as a disease of a particular body part. We now know that it is much more complicated than that, and we need to empower researchers to follow many pathways.
David had a bright and curious mind. For him, helping researchers was never really about helping himself. It was always about helping other people and solving the puzzle of cancer. Brain cancer is the beast that took David from us, and we would love to see that disease wiped out for good. But what if the answer to curing brain cancer lies in pancreatic cancer research? What if the answers we seek lie in the cure for  fibrodysplasia ossificans progressive? (That’s a super interesting rare disease that has been connected to the brain cancer DIPG. You can learn more about that here.)
It’s human nature to strike back at the thing that hits you. But do we really even know what that thing is? Dragon Master Foundation is focused on putting all of a patient’s information into one giant research platform. It’s a database, yes, but it is also a place where researchers can collaborate and gain access to biosamples. It has a patient’s full genomic data, but it also has their treatment path over time. It gives us a more complete picture of what is going on with the patient and what treatments are successful. It can help us understand why certain patients do well on a clinical trial and some don’t. And possibly most important, it looks at patients across many disease types to compare and contrast things like gene mutations. Instead of having one small group of researchers working on a problem, this platform makes it possible for any researcher, anywhere on the planet, to work on high quality data to help find cures.
Tomorrow is #GivingTuesday. It’s a time when people around the world put a few of their hard-earned dollars into the hands of a charity that they hope can change the world. I’m convinced that Dragon Master Foundation is one of the most deserving places you could make your donation. Here are a few of the reasons why:
  • 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.
Dragon Master Foundation isn’t the only foundation funding this. As of right now, there are 13 hospitals and more than twice as many foundations putting resources toward this project. However, many of them have a specific disease focus where they direct their resources. By donating through Dragon Master Foundation, you can be assured that your donation will go to building the infrastructure that will help all patients, all researchers. This isn’t just a gift to help researchers. This is a gift for mankind. This #GivingTuesday, you can  be part of the generation that changes the world.