Kids Helping Kids – Four Pennies at a Time

Dragon Master Foundation

Y O U R S P O T F O R L U X U R YIf you follow me on social media, then you have probably seen some mention of the Four Pennies project. There is a unique opportunity with the Four Pennies project to involve the population that stands to benefit the most: children. The money and awareness being raised through Four Pennies will help children with pediatric brain cancer, and by extension children with other types of cancer due to the expansion of collaboration among cancer researchers, but this project does more than that. It also provides young people with a unique, immersive opportunity to learn how they can help make a difference in their world, and among their peers.

Often children feel powerless to impact change on the world around them, and with all the negative news they are faced with, it can be overwhelming. The story of Four Pennies and Eric Montgomery is a powerful image of a young man who chose to make a positive change in the world and is inviting the rest of us to follow along.

You may be wondering why the project is called four pennies. There is more detail about that on the website (link at the bottom of the page), but here’s the way I put it when I’m talking to kids:

Eric decided to ask people to donate for pennies for every step he takes along this long trail. He picked four pennies because that’s the amount of every government cancer research dollar that goes to kids’ cancer research. So for every dollar that the government spends on cancer research only four cents goes to pediatric cancers. ( I usually pause here to see if they think that is fair. Spoiler alert: they don’t.)

Now four cents a step may not seem like very much, but the trail goes all the way from Mexico into Canada, so it’s a lot of steps. We are trying to help Eric reach his goal of getting four cents donated for every step that he takes by going out and telling people in our community about this amazing thing that he’s doing.

Eric began hiking the Pacific Crest Trail on Sunday, March 18th, but don’t worry! You haven’t missed much yet! The Trail goes from Mexico to Canada, so it will take quite a while for him to complete it – about 4 months, in fact! Eric estimates that it will take him about 4.6 MILLION steps to traverse the trail in its entirety. All along the way he will be giving us updates via social media, so it is a great chance for kids to see some educational principles in action.

Here are a few learning opportunities for classrooms who are following along:

• Geography/Geology – Eric will go through 6 of 7 eco-regions in the US. It’s a great opportunity for some real-world map reading and projections of how long it will take him to travel certain distances. Sample questions to ask: What kinds of things might slow Eric down on the trail? What kinds of terrain will he go through? Will he encounter the same type of terrain more than once?

• Goal Setting – Trips like this require a lot of planning and personal motivation. Eric has been planning his trip for months, taking into account that he won’t have access to  resources (food, water, shelter) along many parts of the trail. He will also need to motivate himself while on the trail for that many days by himself. Sample questions to ask: What kinds of things do you think Eric would need to pack for his trip? How much weight would those things weigh? Can he carry everything he would need for the entire trek?

• Preservation/History/Government – In order for trails like this to exist, they had to be commissioned and protected. The Pacific Crest Trail passes by National Monuments, through State & National parks, national forests and federal wilderness areas. It was one of the first two national trails, and was designated as such by President Johnson. Sample questions to ask: Why would the government need to be involved in protecting the trail? What circumstances make it ok to allocate space for public use? What could the positive effects of this be? Could there be negative effects?

• Math – So many possibilities for math! Students can calculating steps for a given distance, estimate how many steps Eric will take in a day, calculate the potential amounts of money raised based on various distances, etc.

• Biology – Six different ecosystems means the potential to encounter a number of native plants and a variety of species along the path. Students could research the most probably plants and animals that Eric may encounter. They could also talk about the ways the animals and plants differ based on the environments they live in. Sample question to ask: How would you expect the plants and animals to differ between ecosystems? Why would they be different?

• Engineering – land management, maintenance and restoration, construction, motorized vs nonmotorized trails. Sample question to ask: How can modern engineering protect nature?

• Language arts – reporting on Eric’s journey, imagining what could happen along the way, and reading about others who have taken the journey are all ways to engage more with Eric’s path along the trail.

If you are interested in learning more about the project, you can check out fourpennies.org or just send me a message! I can pass questions along to Eric out on the trail, and I’m happy to set up a Skype session with your classroom to help them learn more. If you want to make a donation, you can do that here.

 

Gut punched

Uncategorized

I sat with a family today. People think that I do that a lot, but I don’t. Mostly I don’t because the families we help are spread far and wide. But the other reason I don’t is because it is hard. It is really, freaking hard to go sit in a hospital room and act like the world somehow makes sense.

Whenever I have the opportunity and muster the coverage, I’m equally terrified and honored. It triggers every bad memory I have, but I feel so honored that I am even a blip on this person’s journey.

Today, the journey is for a six year old. He is beautiful. I mean, he is cute, but there is something about his spirit that is just beautiful. His mom is open and honest and it tore my heart to shreds. It is 2018, and we have only inched forward with research progress since David died. I truly believed we would be saving lives by now, but we aren’t. We just aren’t.

I feel the shifts underfoot. I can see the change on the horizon. But it isn’t coming in time for this family today. And that is heartbreaking. And I’m asking you, please, if you want to help speed cancer research, STOP DOING THINGS THE SAME WAY!!!

Innovation is coming from collaborative science, and that is NOT what most institutions are funding. Please don’t just blindly make a donation. Your money has power!! Even if it is only $5, it has a voice! Your donation is a vote, and we need more people to pay attention. Vote for what matters.

We have 17 hospitals who are sharing data, but the funding for the sharing doesn’t come from those hospitals. It comes from foundations like Dragon Master Foundation. It comes from passionate people like you, who are tired of the marketing hype and want to see results. It comes from people like me who work daily to bring about this change.

We might not get answers in time for this child. That is not ok. We need your help to do better.

P.S. I don’t really have a polished ending for this. This isn’t a marketing piece. It’s my blog, where I try to give you a real glimpse of life in brain tumor world. Sometimes it’s just raw.

The Force Is Stronger Now

Dragon Master Foundation, Uncategorized

NoahsLightGoldRibbon

Sometimes on this cancer mom path, you meet people who are on a similar journey. When I first met Amber Larkin, and saw the work she was doing, I knew that I wanted to be a part of that effort. My daughter and I volunteered with Noah’s Light Foundation, even after we had started Dragon Master Foundation. Our missions were so similar, and our boys had so much in common, that working with them just felt right.

Recently Amber came to me and told me that she has a different path in mind for Noah’s Light, and she asked if Dragon Master Foundation would be willing to take on some of the work she had started with their foundation. What a very special request that was! To say I was honored would be an understatement. I have a lot of respect for what Noah’s Light has accomplished, and like the Jedis that Noah and David loved, they are passing their knowledge and wisdom on to us.

Amber tells the story best so I’ll let you read all about it here:

http://www.noahslight.com/the-new-light-a-note-from-amber/

Thank you for being part of our journey so far, and we are excited about all the new things in store for 2018.

How is Cancer Research Like Playing “Go Fish”?

Dragon Master Foundation

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!

So Much For “Catching It Early”

David's Journey, Lessons Learned
David & Rachel

Does this look like a kid waiting on brain surgery?

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!)

Can Zika Really Cure GBM? Experts Weigh In

Lessons Learned, Uncategorized

3D Image of the Zika Virus from WikiMedia

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.

 

Recognition for “Putting Kids First”

Dragon Master Foundation, Uncategorized

Gabriella Miller Kids First Pediatric Kids First Research Program

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.

 

Finding the Poetry

52 People To Meet Posts, Lessons Learned, People We've Helped

IMG_7611A long time ago, I wrote a poem for my coworkers. I really had a lot of admiration for them, and they taught me a lot of life lessons. They worked hard, played hard, and made the most of every day. They were paralyzed veterans, and as much as I could, I tried to learn from the lessons they shared. Their strength amazed me, and they made me re-think one of my favorite pastimes – complaining. 😉

I think in a lot of ways, I met those men and women to prepare me for what life had in store. It isn’t always easy. It most certainly isn’t fair. But what you choose to do with the pieces you have left after your life explodes… well, that can make all the difference.

Today was supposed to be an “office” day for me. A day to tackle the mountains of paperwork I’m behind on. Instead, it turned into a day to go out into the world and see what it had to share. A lot of what I do is try to raise money for cancer research, and today I had the opportunity to get a check from one of our loyal supporters. That’s a really good thing!! But the reason they are supporters is because their daughter, Addison, died from brain cancer. That really sucks. I get to know them a little better each time we meet, and our conversations nearly always include laughter along with the tears. Today the check came with a hug, and I’m not sure if it felt better to be able to hug them as a thank you or to be hugged in return. Hugging is like that, I guess.

I also had a chance to go visit their daughter’s grave. They picked an amazing spot for her, and I could just feel the love there. Still… it just sucks to visit a child’s grave. I sat and talked with her for a minute about what her parents are doing so that other kids might not have to suffer the way she did. Addison was a fighter that defied the odds. I think she would be happy to know that her tumor got taken out, and hopefully what we learn from it will be used to fight some other child’s tumor.

As I visited with Addison, I listened to her wind chimes and the other sounds of nature there. I thought about how the world shows us poetry if we just stop to see it. Sometimes it is given to us in words, but many more times it is just the feeling you have inside. There aren’t always words to express the feelings we have. The love and the grief are just too big for words.

Addison’s parents let us us her as the “sponsor” for the first child to go on the upcoming clinical trial we are sponsoring, and because of their generous matching gift, we actually funded the first two kids onto the trial. That left me with coming up with a second sponsor person – someone that we can visualize as we fund the third spot on the trial for this unknown child.

And that’s when the day took a turn. You see, there are just so many families we know that have been touched by this disease. So I tried to narrow it down based on significant days to that family, and even that didn’t help! There was the anniversary of Ethan’s passing yesterday, Carter’s birthday today, and the anniversary of Jake’s passing today/tomorrow. (Yes, Jake is special and gets two days. More about that later. )

Most of these kids I never got to meet except through the broken-hearted words of their moms and dads. It’s the same for the adults with brain cancer. They leave behind shattered families who ache to have someone say their name. To know that they mattered and continue to matter.

We are funding this clinical trial to try and save lives, and for me, it is so special to connect the spots on the trial to these special brain cancer warriors. I hope it is special for their families, too.

We post about the progress pretty regularly on Facebook, so please join us there to see pictures of our sponsors and help us fund all 200 spots on the clinical trial. There are some really great stories to share with you as we go, and if you would like your loved one to be part of this movement, just let me know.

P.S. As for the rest of my day, I hope I got to spread a little sunshine into Carter’s family’s world, and I know that my brother and daughter spread a little into mine. I may have more to share on that later, too.

Survivor Offers Words of Hope to Senator McCain

Dragon Master Foundation

electioncancergraphic

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!

How weird are you?

Dragon Master Foundation

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