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!)
For most people, trying to navigate the world of new cancer treatments is not easy. The media reports on new discoveries like they are already viable treatments, and patients are often confused as to why they can’t access things they hear about on the news.
We’d like to help brain cancer patients and their families understand these discoveries a little bit better. The first step is really to understand that there is a big difference between what can happen in the lab and what happens in the human body. The lab gives us our first indications that something is worth exploring, but however promising something is in the lab, in the human body that path can lead to many things — from healing to death.
As our first example in what we hope will be an ongoing dialogue, let’s look at the Zika virus news. You’ve probably seen headlines like “Employing Zika Virus to Treat Advanced Brain Cancer” and “Zika Virus Targets and Kills Brain Cancer Stem Cells”. That sounds great, right? Who wouldn’t want to jump on that?
Unfortunately, these are still lab studies, and have a long way to go in proving safe and effective in humans. For some clarification, we reached out to Dr. Cheng-Ying Ho, MD, PhD, at the University of Maryland School of Medicine. Dr. Ho has done some work with both the Zika virus and brain tumors.
Dr. Ho states, “The misconception about Zika originated from the earlier cell culture studies showing Zika preferentially infects neural stem cells. However, the cell culture system is an oversimplified model. It doesn’t have glia or inflammatory cells like human beings.”
She goes on to say, “Mouse models are a lot better, but most of the mice need to have a weakened immune system before they can be infected. Therefore these mice don’t have the immune response against the virus. It is also an artificial system.”
Many times, doctors and researchers are afraid to share preliminary results from studies because the general public may draw the wrong conclusions. Dr. Ho seems to share that concern. She states that her biggest concern about this seemingly promising strategy is the possibility of developing meningoencephalitis. Meningoencephalitis can be fatal and it has occurred in adult Zika patients.
Dr. Ho ended our interactions by saying, “The concept of using Zika virus to treat glioblastoma is very creative but may be difficult to be put into practice due to the possibility of fatal uncontrollable side effects.”
We also talked to Dr. Javad Nazarian of Children’s National Health System because of his work on pediatric brain tumors. He said that the issue is more complicated in children. “A child’s brain is constantly growing and making neuronal connections. It is an active environment and any time we apply drugs that indiscriminately target tumor AND healthy cells, we could potentially do more harm than good. That is why laboratory findings need rigorous testing and multiple validation steps before they have clinical benefits.” He went on to say that this is one reason that discovery and validation of effective treatments takes time.
Obviously, there are labs who are very interested in pursuing Zika as a possible treatment agent. We know that creative measures will be needed to combat GBM and other aggressive brain cancers, so we will continue to hope that one of these creative solutions will turn out to be a viable solution in humans. Will that be Zika? It seems to be too early to say, but for now, patients should not expect this to be a treatment that would be offered soon.
Note: This article is not intended as medical advice and you should always seek the opinion of your physician before starting or stopping any new treatment. Blog post was first published on Medium.com.
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.
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.
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!