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!
I found a Facebook post today from before I started this blog. You see, I didn’t know the path that we were headed down. I didn’t know that I would be trying to help others navigate the ugly world of brain cancer. I thought my son had a brain tumor that would require some potentially risky surgery, but that we would get it out and be on our merry way. I didn’t know a lot of things – then.
Fast forward to today, when I know more than I ever wanted to about brain cancer and how devastating it is – even when it is small and they catch it early. You see, this disease isn’t like most cancers. Catching it early doesn’t dramatically improve your chance of survival. It being small doesn’t make it any less aggressive.
Looking back at this post, I am struck by how naive I was. I know that the rest of the world is also that naive. I know that you won’t really understand unless, God forbid, it happens to you or someone you love. And that’s the real kicker. It COULD happen to you or someone you love. We have no idea why David got brain cancer. Most brain cancers can not be traced to a specific cause. He didn’t smoke or drink or even use a cell phone much. He was a healthy, happy 16 year old who didn’t deserve this. No one does.
This post is full of optimism, and though we may not have David with us anymore, we still have his sense of optimism. We know we are on the right track. We know we will help put an end to this disease, and most likely, many others. I wish with all of my heart that it had happened in time to save David, but I move forward everyday with a sense of urgency that it today it could be someone else’s “David”. One day, a mother will get to keep her innocence because of the work you are helping us do.
Here’s the post from September 3, 2010:
David was having really bad headaches so his dad took him to the ER – twice. Second time they did a CT scan and saw something. Turns out he had a small growth with some bleeding. The bleeding was irritating the area & giving him a headache. (We had originally thought the bleeding was an issue, but it seems to have stopped fairly quickly on it’s own.) So the headaches alerted us to a problem (the growth) that might have gone unchecked for a while otherwise.
The growth is a concern because it shouldn’t be there, but as growths go, it seems “good”. It’s small and compact, like a ball – not “reaching out” like an open hand.
Because it is in his head, they want to be very careful how they approach it. Since everything has stabilized so much (a very good thing) they are waiting for the dust to settle (or in this case for the blood that is in the wrong place to be reabsorbed) so they have a nice clear picture when they put their tiny scope camera in.
Now, this may sound intense, but there are some good things working here: 1) they caught it very early and 2) they have time to calmly decide on the best approach to fix it. Since he is doing so well, they can start with the least invasive thing and only use the more invasive stuff as a latter option. (A lot of times the situation is more severe and they have to use the “big guns” right away. And yes, that is just a figure of speech!)
The growth is in his brain, and not in the easiest location to reach, so the doctor is being very cautious about how and where he goes in. It is very likely that David will have to do a little rehab depending on what procedure(s) they have to use.
His headaches have been well under control (sometimes gone) since the day after he came into the hospital, so he’s feeling pretty good. He has been kidding around a lot today and seems pretty comfortable with what’s going on. He does know everything and was able to ask the neurosurgeon questions. (Which, if you know David, you will know that made him happy.)
Please keep praying for him. Things look good for the circumstances, but we have a lot of work to do next week.
Lastly, I’d just like to thank all of you who’ve sent messages of thoughts and prayers. We’ve been fortunate that we’ve never really had to deal with this kind of thing before, so I never really knew how much that meant. We are confident that God is working powerfully for David, and we are so thankful for the prayer warriors out there who are lifting us up. (On a light note, we were visualizing that today as sort of a prayer with a “raise the roof” hand motion. God is good!)
We are so proud to share the announcement that the Center for Data Driven Discovery in Biomedicine (D3b) has been selected to lead the NIH’s Kids First Data Resource Center. D3b is based at Children’s Hospital of Philadelphia, and they along with a number of other partners, including Dragon Master Foundation, will be a integral part of the new, collaborative effort funded by the National Institutes of Health Common Fund to discover the causes of pediatric cancer and structural birth defects through the use of big data. The Center will be known as the “Kids First Pediatric Data Resource Center” (DRC).
This effort goes hand-in-hand with the work we have been doing on Cavatica, and as a liaison to the Children’s Brain Tumor Tissue Consortium’s Scientific Advisory Committee, I will be attending meetings for the next three days related to this and other collaborative efforts to take place in the coming year. We are so excited about the influx of resources from NIH, but it does not take any of the pressure off of the work we are already funding. This means that the project will grow bigger and faster, but there is much work to be done on our own efforts. For example, the clinical trial that we have committed to fund still needs to be funded.
We want to take this opportunity to recognize all of the hospitals, foundations, individual doctors and researchers, and families who have worked together to get us this far. This really is a massive undertaking that we believe will forever change the way we conduct medical research. Please take a moment to read the full press release here.
This post is a guest post by Alexander Moore. Graphic created by Laurel Jackson.
It saddened me deeply to hear that American hero John McCain was diagnosed with Glioblastoma or GBM, the most common and most malignant of brain tumors. It is simply not fair for someone who has already suffered the unimaginable horrors of war and captivity to now have to endure the pain of Brain Cancer. Senator McCain will be 1 of nearly 24,000 people diagnosed with primary brain cancer this year in the U.S. Not a lot in the grand scheme, but for almost 24,000 people and their families, it’s devastating. The median survival is 16 months and the effects of the disease and treatment deeply impact quality of life.
Senator McCain has already had surgery to have as much of the tumor removed as possible, but he will most likely go through a treatment regimen which combines radiation and an oral form of chemotherapy. For most who suffer from GBM, treatment only really prolongs life because the tumor is almost guaranteed to grow back even after chemotherapy and radiation. Through the next few weeks, the McCain family will learn all about Brain Cancer and the devastating effects it has on those who have to endure it, just like another political powerhouse family, the Bidens did a couple years ago.
Former Vice President Biden lost his son Beau to Brain Cancer in 2015, and since then has made it his mission to radically change the way that cancer research and treatments are done with the Cancer Moonshot initiative. The Cancer Moonshot initiative has been a point we can all rally around, and hopefully, these additional efforts will speed new treatments for patients everywhere.
There are big changes happening in cancer research, and there is every reason to hope that discoveries will be made faster than ever before. Initiatives like Cavatica.org, funded in part by Dragon Master Foundation, make cancer research data open to researchers around the world. Additionally, researchers are willing to push their work into new frontiers, like the Children’s Brain Tumor Tissue Consortium (CBTTC) and Pacific Pediatric Neuro Oncology Consortium (PNOC) hospitals who have agreed to share data live during a clinical trial that is set to start later this summer. We are working closely with these initiatives, both through idea sharing and funding. Patient, family and foundation input is being heard more than ever before, and I am optimistic that Senator McCain will be a strong advocate for both himself and other patients facing a similar diagnosis.
I’m confident that Mr. McCain has the fortitude to take this disease on full steam, and everyone at Dragon Master Foundation wishes him well.
Editor’s note: The odds of getting brain cancer is about 1 in 140 for men and 1 in 180 for women. The odds of being elected to Congress are 1 in 600,000. Let’s all hope Senator McCain continues to beat the odds!
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.
A lot of people I know believe that their loved one can send signs from Heaven. I’ve always been a bit of a skeptic about this, but I can’t deny that things happen in quirky and unexpected ways that certainly bring David front and center for me.
Today, I was listening to Ben Rector’s Brand New. It’s a song I really connect with – usually in a very happy way. Today, though, it happened to play as I was doing some work on kids with brain cancer. I listened to the lyrics in a different way because of that. Normally, I think of my husband when I hear it, but today, I thought of David. He had this crazy dance thing he would do in middle school called the Llama dance. It was silly and pointless and that was the whole point. It was just to make people laugh. The lyrics for the song say this,
“Like when I close my eyes and don’t even care if anyone sees me dancing
Like I can fly, and don’t even think of touching the ground
Like a heartbeat skip, like an open page
Like a one way trip on an aeroplane
It’s the way that I feel when I’m with you, brand new”
I miss the fresh and happy way that David looked at things. He saw the good. He saw the possibilities. A lot of what we are trying to do is because David believed that REALLY good things were possible. The work we are doing is not easy. It is hard. It is expensive. Half of my days are spent alternating between people who have trouble connecting with the cause because they haven’t lost a loved one to a “rare” disease, and the other half is dealing with people whose lives have been shattered by it. The real message isn’t about rare disease, though. It’s about the human condition, and how we can improve life for everyone if we do this one hard thing.
“Brand New” normally makes me very happy, but today, it just made me sad. It made me miss the way I got to feel when I was with David. I can tell you that it feels a little strange to be crying buckets while such an upbeat song plays, but there I was. The song ended, and the next song to play was
Andy Grammer’s “Good To Be Alive”.
If you aren’t familiar, some of the key lyrics for this song are
“I’ve been grinding so long, been trying this shit for years
And I got nothing to show, just climbing this rope right here
And if there’s a man upstairs, he kept bringing me rain
But I’ve been sending up prayers and something’s changed
I think I finally found my hallelujah
I’ve been waiting for this moment all my life
Now all my dreams are coming true, ya
I’ve been waiting for this moment
And it’s good to be alive right about now
Good, good, good, good to be alive right about now”
If you don’t really listen, it just sounds like a typical happy song, but when you listen to the lyrics, you understand that the joy he feels is because he has spent years trying to get to this point. The struggle to achieve your dreams makes attaining the dream euphoric. On paper, we have a lot to be proud of, but in reality, we’re still climbing that rope. We’re putting hand over hand, making progress. The doors are opening, but it will take a lot more money to really get us where we need to go.
I think this song came on to remind me that we will have our “hallelujah” moment. We will see the day when we can truly deliver people from the grips of brain cancer. I believe that the course we are on will also help find cures for lots of other diseases and medical conditions. But we really do need your help. We have all been given the gift of life TODAY. And what we do with that gift can make our collective world a better place. Will you join us?
We need to people who will help us raise money in the Macy’s Charity Challenge. It doesn’t start until July 11th, but you can sign up now. You may not think it will make a big difference, but it does. Because if you take a step forward, other people will step forward, too. It doesn’t matter if you aren’t online much or if you hate fundraising. In fact, it means so much more if those things are true. By signing up, you are saying you believe in David’s vision. You’re saying you believe we can create a better world. It only takes a few minutes to sign up, and you could help us have that “Hallelujah” moment.
Sign up here: https://www.crowdrise.com/fundraise-and-volunteer/the-team/dragon-master-foundation
(If you see an image that says “test team”, don’t worry – it should still take you to the Fired Up For A Cure/Dragon Master Foundation Page.
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.
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.
- 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.
- 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.
- 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.
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.
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.)