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.

 

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.

Signs, Llamas, and Hallelujahs

David's Journey, Dragon Master Foundation

dancingllama.jpg

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.

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.

The Top 9 Things You Need to Know When Your Child is Diagnosed With Cancer

David's Journey, Dragon Master Foundation, Uncategorized

carpeWhen 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!

One Small Gesture CAN Change the World

Dragon Master Foundation, Uncategorized

Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.

My heart may be broken, but I don’t want yours to be. 

There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.

This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.

You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016

In case “warm fuzzies” aren’t enough

Dragon Master Foundation

We are a few days into the Revlon “Love Is On” Campaign, and I’m super proud of our effort so far. For such a new foundation, we are really holding our own! I know a lot of our supporters are not on Facebook, so I wanted to do an update here on what you can get by helping Dragon Master Foundation in our quest to win a million dollars. You know, in case the warm fuzzies aren’t enough. 🙂

We announced that we will have a special “thank you” bundle for everyone who donates more than $150, and today, I’m going to tell you what that bundle includes:

  1. A Hope, Love, Cure, End Cancer Vinyl Cling  – These are a great way to show that you support cancer research! You can put them on your car, on a dorm window, or the entrance to your business. Show the world you care!

    screen-shot-2016-09-15-at-9-28-31-am

    T-shirt and vinyl cling design

  2. A Snazzy Awareness T-shirt  – Ok, I know “snazzy” isn’t very descriptive, but the t-shirt will be changing each week. The first week’s shirt is a yellow gold with a grey imprint of our Hope, Love, Cure, End cancer design. It’s only available until Tuesday, September 20th, so be on the lookout for the next shirt after that. (Side note: If you donate more than $150 each week of the campaign, you get a new bundle each week!!)screen-shot-2016-09-19-at-8-46-37-am
  3. A CanPlan Planner – These are an awesome resource for people going through cancer treatment! It’s a leather hardcover design that just feels good to carry around, and the patient or caregiver that has it will feel better because they will have the information they need at their fingertips. This beautiful resource is available for purchase for $29.95 on their website (http://store.mycanplan.com/) or you can make a donation and get one as part of your bundle!insert_dmf_front
  4. A Two Pack of Dragon Snappets – This creative toy is a wonderful gift for kids battling cancer – or kids who aren’t battling cancer! Constructed of paper and rubber bands (no scissors or glue needed), the interactive toy lets them make their own dragon hand puppet and then have hours of imaginative fun while the dragon makes a satisfying “snap” sound when you close his mouth. Normally $9.99 (you can purchase extras here) this awesome gift will also be part of your bundle!
  5. The satisfaction of knowing you are making the world a better place. Really, the “stuff” is nice, but when it comes down to it, your donation will be helping us have a chance to talk to Revlon about open access cancer research and the need to break down the research silos that exist. It will be offering hope to patients with rare cancers who are currently told at diagnosis that they are terminal. It will put new and powerful tools into the hands of doctors and scientists who have dedicated their lives to finding cancer cures. That’s the very best gift of all.

You can donate to Dragon Master Foundation for the Love Is On Challenge by going here. You can donate directly to the foundation, or choose one of the team members who are helping us. Better yet, sign up to be on the team and help us spread the word! We need to be in the top 10 group by tomorrow to win the next challenge grant of $5,000, so every little bit today REALLY helps!

 

 

Leaving an impact on the world

Dragon Master Foundation, Uncategorized


Last night we attended the second night of Richard’s class reunion. These are people he’s known for the majority of his life, but I mostly only see them every 5-10 years at these functions. They are a funny, welcoming group, and I enjoy seeing them reminisce. This year, though, one of them told me I was now a “falcon” and referred to Richard as my date.😉  

This group of people has been touched by cancer. We are not the only ones with a child in Heaven because the disease. Countless lives have been ended too soon, and others have fought battles that have left them with deep wounds. We were offered words of encouragement throughout the group, and that always has a buoying effect on me. But more than that, last night we got a significant gift. 

One of the cancer warriors gave a generous $1,000 to our Love Is On team. I know that it was a meaningful gift from her, and it was received with all the tears and hugs you might expect. And while that was an amazing and significant donation, we recognize that a lot of people can’t give at that level. So I wanted to also tell you about some of the other things that happened that are helping us along the way.

The event committee had extra soda and beer from the event that they donated to Dragon Master Foundation so we can offset the cost of an upcoming event.

 A classmate’s wife offered to reach out to her network to tell them about the Love Is On challenge and help us get donations. 

People asked about the challenge and what it could mean for the foundation. They asked about Orlando. And I believe the help from that group will continue to grow as the week goes on. These folks have reached the age where many are retiring and looking back on the contributions they’ve made to the world. Kids, grandkids, service to others, challenges overcome … They have a lot to be proud of. We think being a Dragon Master Foundation supporter is an excellent thing to add to that list.

We have a very urgent need for donations over the next few days. We need to be in the top 10 charities by Tuesday in order to receive a $5,000 grant from Revlon. That boost would really help us get to our $50,000 mark much faster. If you can afford $15, we have a cool window cling we can send you. For donations more than $150, you get a whole bundle of goodies including a great, limited edition awareness t-shirt. Please donate today. Any amount over $10 counts toward the contest and it is significant to us.

Helping Orlando

Dragon Master Foundation, People We've Helped

20160621_145235-1This week has renewed my faith in humanity. It’s so easy to sit by and watch the world slowly spiral out of control, but it’s really not hard to make it stand still, either. when you are told there is nothing more they can do for you loved one, be it your child, your mother or your husband, your world stops. But only for a moment, and then it starts falling. The more time that passes, the faster it goes. You’re hurtling toward an abyss with nothing to slow you down. With a lot of help, this week, we were able to slow that time down for a family who is so desperately looking for a cure.

Orlando is a sweet 11 year old boy who lives in our hometown. He has two sisters and a brother, and a family who loves him very much. And the local doctors told the family it was time for him to go on hospice. No more options. But that wasn’t acceptable to his mom, Lacy. She kept searching for a way to save Orlando. There are no guarantees in the fight against brain cancer, but she found a treatment that offers Orlando some hope. Some more time. But that treatment was half a country away.

Dr. Santosh Kesari has been working with brain cancer patients for his entire career. From Harvard to UCSD, he has gone where the research took him, searching for better treatments for people with brain cancer, specifically glioblastoma multiforme, which is what Orlando has. In the past few years, he’s had some success with a drug called Everolimus. Everolimus (Afinitor Disperz) got accelerated approval for  subependymal giant cell astrocytoma is adults and children in 2012. Afinitor Disperz is the first pediatric formulation to be approved by FDA for the treatment of a tumor that occurs primarily during childhood. (In layman’s terms, astrocytomas turn into glioblastoma multiforme, so that is why this drug is a possibility.)

You can see some of the results Dr. Kesari has had via this article:

http://abc7.com/health/doctor-improves-cancer-teens-health-with-game-changing-approach/1175310/

I know it seems like something that has been FDA approved since 2012 should be common knowledge, but the 5 year study results haven’t been out that long. (Five year study results: http://www.ncbi.nlm.nih.gov/pubmed/26381530With brain cancer, you really need a doctor who is paying attention to the very latest studies to try and gain as much quality time for the patient as possible. Dr. Kesari isn’t just paying attention  – he’s one of the ones paving the way.

But finding a possible treatment is just the first step. Dr. Kesari needs to evaluate Orlando in person to make sure this is indeed a viable treatment option for him. (All other labs and scans would indicate that it is.) 

With brain cancer, the clock is such an enemy, but treatments like this give us real reason for hope. On Orlando’s behalf, we reached out to the community for help to get him and his mom to California to see Dr. Kesari. Thanks to Brad Pistotnik Law and  a very generous offer of the use of a jet, we will be able to get Orlando and his mom to Santa Monica on Monday. We found out yesterday that there is enough room for Orlando’s sister to go, too, and we are so happy that she will be able to be there and give him moral support. They are only 15 months apart, and they are very close. 

There will be additional expenses for this family while they are split up trying to care for Orlando and his siblings. Dad is staying in Kansas with the two youngest children, but he works so they need additional childcare. Orlando’s meals will be at the hospital, but there is no coverage for his mom and sister for food. Also, this is an “out of network” hospital, so there will be higher medical bills.

Dragon Master Foundation recently adopted a change in our bylaws to be able to help families in this situation. A brain cancer patient can be sponsored by a person or community, and donations can be raised to directly help that person. The first person to benefit from this new program is Orlando. If you would like to help the family with expenses, you can text the word “cancer” to 91999.

If you can’t help financially, please share this story and join our Thunderclap, an effort to help win a million dollars for cancer research. You can join the Thunderclap here: https://www.thunderclap.it/projects/44920-love-is-on-to-conquer-cancer