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:

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: 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:

Does Cancer Make You Sad?


That’s not a rhetorical question. I want you to stop and think for a moment about how cancer has impacted your life. Did it attack you personally? Maybe it stole away a loved one? Perhaps you haven’t lost someone close to the disease, but it still attacked them. It made them miserable for months, and filled their life with worry and dread. Will it come back? Who will it strike next? Maybe you’ll comment below with the answer, maybe just thinking about it will just help you understand what I’m about to say.

Cancer makes me sad every day. I’ve never had it. But my son, David, did. My handsome, happy, quirky son was struck with brain cancer at only 16. He was positive, we had thousands praying, we had the best doctors, and he still died. There won’t be a day of my life that isn’t tinged with sadness because of that, but that is not my story. It is not my son’s story. People think that we work on cancer research because it makes us feel like we are keeping David’s memory alive. That’s wrong. David’s memory would live on in our minds and hearts no matter what we did. If I never forced myself out of bed in the morning, David would still be there. Just like our other children, he is still everything to us.

The reason we work so hard for cancer research is because David isn’t here to do it. Cancer took one of the best people I’ve ever met, and I know he wouldn’t have stopped trying to help people. He isn’t here, so I have to work twice as hard. That was my motivation in the beginning, but even that has changed. Like a person who has glimpsed Heaven, I’ve had a peek at what the future holds for us if we collaborate, and I’m hooked. It’s the most powerful feeling — to know that you might be able to play some small part in helping others be spared the pain that you have known.

I’ve lost track of the number of researchers we’ve talked to over the last six years. The recurring theme was that they needed better technology, more open access data, and faster access to biosamples and electronic records. We’ve found partnerships with these visionaries who want to break down the data silos and really speed cancer research. The ball is starting to roll, but there is no smooth path to follow. There are bumps and obstacles along the way. But the thing about balls is, they are more likely to keep rolling. These researchers are the same way. So are the administrators and the doctors and the patients who are all working together on this effort. It’s hard to put a number on how many are a part of this effort, but it involves top children’s hospitals all around the U.S. and is beginning to stretch beyond our borders. (Thank you, Italy!)

We want to smooth the path by giving collaborative scientists a place to work where they can share their data and make faster discoveries. The beta version of this project is called Cavatica, and it is live now. Today. It is real, and an alpha user of the platform said that it shaved a month and a half off of a process that would normally take two months. From two months to two weeks! We’ve started, but the platform needs to be so much bigger to help us find the answers we seek. So this is an appeal.

If you believe that open access data is important for clinical research…

If you believe that we need to be able to track patients through multiple trials to learn why treatments work or they fail…

If you believe that we might learn something by comparing adults and children in the same database…

If you believe we might learn something by comparing brain cancer to fibrodysplasia ossificans progressiva or other rare diseases…

If you believe that big data analytics can save valuable research time and help us narrow down causes and treatments faster…

Then please get involved today. Dragon Master Foundation has a chance to win a million dollars for cancer research in the Revlon Love Is On Challenge starting on September 14th. If you haven’t heard of us before, don’t panic. We’re only 3 years old, but we’ve already won a White House award and been invited to participate in Vice President Biden’s Cancer Moonshot Summit. Dragon Master Foundation is a 501(c)(3) with no paid staff. We are just a group of volunteers trying to give researchers what they need to find the cures we all want so desperately. Here’s how you can help:

People literally laughed at us when we told them that we wanted to build a research platform where cancer researchers could share data and work together. No one is laughing now. Cancer could have just made us sad. Instead, it motivated us to help others. We hope you will join us.