Plan Ahead in Honor of World Cancer Day

Lessons Learned

Screen Shot 2016-02-04 at 5.35.40 PMIt’s World Cancer Day, a time when lots of people are thinking about prevention and cures. I think it is a very hopeful day, when we can rally together and bring awareness to a disease that plagues our society. I’m completely convinced that we could rid the planet of this disease within our lifetime, and I’m heartened to hear more and more people uttering similar beliefs.

At the moment, though, the disease is at large. We never know who might get it or when. My son was 16 at diagnosis but became an adult (18) while fighting brain cancer. He went from a child that we made decisions for to a young man who should have made his own decisions. But cancer was undermining his decision making process. He struggled to make sense out of things that would have been simple for him a few months earlier. He was smart, but cancer robbed him of his confidence. His own mind played tricks on him, and he wasn’t sure of himself. It was a scary time for all of us, and though he was a technically an adult, we still made decisions for him to the best of our abilities. It’s hard to know what another person truly thinks – even if it is your child or your spouse. You do your best, but it is hard to keep the doubts at bay. The best step to avoid this situation is to be proactive. Make a plan before you need it, and you can be more at ease during life’s most difficult times.

I think most of us have the best of intentions when it comes to getting organized. We even take steps toward doing it. Some sort of filing system for your tax papers. Maybe a safe deposit box for important papers. But there are a lot of legal documents that most of us avoid. Wills. Advance Directives. Stuff that means not only are you an adult, but an adult who might one day die. Scary stuff. But it doesn’t have to be.

I found this really cool article from Everplan that walks you through a lot of those important adult things. It’s relatively painless, and it is super important. I talk to families all the time who spend grueling hours trying to decide what their loved one would have wanted if they could have decided for themselves. Brain cancer frequently steals away the ability to make good decisions – and it happens long before most people are prepared for it. So take a few minutes now, and check out this list. Make it a priority to work on it steadily for a few weeks, and before you know it, you’ll have all those “adult” things behind you.

Here’s the link:

https://www.everplans.com/articles/an-encouraging-to-do-list-for-getting-organized-in-2016?utm_source=Everplans+Newsletter&utm_campaign=11a47ed0c9-Cash_Windfall_Non_Members_1_15_2016&utm_medium=email&utm_term=0_fdb52c78d8-11a47ed0c9-147163513

By the way, I am not endorsing Everplan’s service and this is not an ad for them. I have not tried their service, so you’ll have to make your own decisions about that.

 

Choose Hope

Uncategorized

hope sign

This human existence is a strange thing. Full of ups and downs, it seems like we should all get an equal shot at playing the game. But we don’t. For some of us, the journey ends just as it should be beginning. Bright and shining stars extinguished before their light touches everyone. But what about those of us given the gift of time? What do we do with it?

I want to take a moment today, as sweet Jackson is laid to rest, to talk about hope. For if ever there was a family that knows what it means to hope, it is the Jackson/Beezhold family. Articulate and caring, I met them first online through some Facebook support groups. They knew Jack’s odds, which were not good, but they lived with hope every day. In big and small ways, they filled Jack’s years with life –a lifetime of happiness. It was an unbearably short lifetime, but we could all wish to be loved that much.

It makes me reflect on my blessings – among them, this family that I’ve come to know. It takes true faith to find hope after you are dealt a blow like childhood cancer. To know that life is not perfect, but there are gifts – even in the times of imperfection. Today, I grieve with Jack’s family, but I also hope for everyone still fighting. I hope that they will have great joy in as many moments as they can. I hope that those of us not personally battling disease will see what a gift that is. I hope that we will all be empowered with the knowledge that we can make a major difference in this world – through our attitude and actions. I hope that we will all have the vision to see the blessings instead of the curses.

I hope that we will all take moments for ourselves, but that we will take more moments in service of others. We have been given time to play this game of life. And I think one of the secrets to “winning” is teamwork. I’m sad that we didn’t find a cure in time to help Jackson. But I’m not giving up. I choose hope. We have a great big team of warriors depending on us. The bigger our team, the better our odds of winning. I want to give everyone the chance to play the game for as long as possible. I want us all to die as old people who have been given every chance to grow old gracefully. Some will do amazing things. Some won’t. But wouldn’t it be cool if we were all given the same odds?

Is Empathy Better than Apathy?

Dragon Master Foundation

Apathy

Let me just start this post by saying I just got bad news. I’ve come to know a family very well through their son’s GBM battle, and I just found out they are sending him home on hospice. No more options. He’s just a little boy. His Caring Bridge page has a rocket ship. He likes Legos and Star Wars. And they don’t have any other treatments for him. He is struggling to breathe, as many warriors do, because the tumor is pressing on critical parts of his brain. I’ve sat beside my son’s bed and watched that all happen. I’m horrified that they will have to do the same.

With each new family I meet, I think to myself, “I hope this is the one we save.” And I believe each time that it might be that person. That dad, that daughter. When I express my frustration in the timeline to those around me, they are always quick to say, “but look how far you’ve come!” That may be true, but it isn’t far enough, fast enough. We’ve made amazing headway. But it isn’t saving Jack.

When I post on Facebook or Twitter about these kids, people are quick to offer prayer. They are even quicker to send a birthday card or gift to the sick child. That gives peace for a moment, but I want more. I want the same kind of action and passion toward curing these warriors so that we don’t feel the need to make their birthday special because it is probably their last. Which brings me around to my question. Is empathy better than apathy?  Are we really helping anyone by feeling sorry for them? When you read those stories and posts and think, “oh how sad”, does it incite you to action?

Today I read some of the comments on VP Biden’s Cancer Moonshot post. At that time, there had only been 125 people who had shared their cancer stories. My story is near the top with only 10 likes. Are you kidding me?!? The Vice President of our country is finally making cancer research an issue and only 125 people could be bothered to respond? I get that not everyone likes to write about that stuff, but everyone could go click like on a story that resonates with them. Is cancer research important to you or not?

I’ll be perfectly honest. Six years ago it wasn’t a priority for me. I thought most cancers were curable, and that the ones that weren’t were extremely rare. I was wrong. Cancer is still a devastating disease that takes many forms – quite a few of which are virtually untreatable. Oh, they will do some form of treatment for everyone, but in cases like brain cancer, they know it most likely won’t do much good. May God bless the folks who go through these treatments knowing it may not help them, but it might help someone else down the road. David did that. And that’s why I am so passionate about this. If I had gotten passionate about it 10 years ago, maybe we could have saved him. But I’ll be damned if I sit by and let other people die when I know that science is capable of better treatments, and yes, maybe even cures.

When I was reading those posts, several people asked what they could do. No one had responded to them, so I did. I told them to volunteer with groups who are looking to change the status quo. Post on social media in support of those groups, and financially support them whenever you can. If we want change, we have to make it happen. Today the bad news went to Jack’s family. It could be anyone else tomorrow. Seven more children will be diagnosed tomorrow. Three of them will lose their battles. Every day. To me, that means we have absolutely no time to lose. What does it mean to you?

 

Imagine

David's Journey, Dragon Master Foundation

IMG_3572Imagine for a moment that you were diagnosed with cancer. (I pray this is never real for you.) You are sitting with your doctor, and he gives you your treatment options based on what they think might work for you. You’re given the odds based on every other person who has ever had that type of cancer. What would you think?

I have not been diagnosed with cancer, but my son, David, was. As his parent, it was my job (along with his other parents) to choose a course of treatment to give him the best chance at survival and the best quality of life. They told us the odds – that he would probably die within the year. We chose to believe in a better outcome, and so did David. We studied everything we could get our hands on to improve his odds. And we did, but only for a while. David died 20 months after being diagnosed.

His odds were based on every other person who ever had that disease. He should have lived longer because he was young – just 16 at diagnosis. But I know others who were much older and lived much longer. Why? If you were diagnosed, wouldn’t you want to know why some people live longer?

In essence, that is what Dragon Master Foundation is trying to do. We are helping fund a database that will help researchers discover why some patients respond well to a drug and why some don’t. The answers are there…in our DNA. The problem is, most hospitals only have access to a relatively small number of patient records. One hospital alone will never accumulate enough data for true “big data” analytics. Because of the multitude of cancer types and subtypes, even most consortiums don’t really have enough data to see the big picture. And yet, you will see and hear about more consortiums formed all the time. More efforts to amass that kind of data.

You might think that we are just one more effort, but let me tell you why we are different. We aren’t just a consortium. Yes, we do have certain hospitals who have agreed to the strict standards for data collection and sharing. But unlike a traditional consortium, the records being collected are available for researchers at other institutions. Virtually anyone with need can access this data. At this point, there are over 1,400 subjects in the database, but that number is growing every day because more people are diagnosed every day.

When a diagnosis comes in your world, do you want statistics based on every other person, or do you want to know what treatment will work for you? Help us build the resource today so that we all have a better chance at survival tomorrow.

P.S.

I am honored to share this picture of Jonny with you all again. You may know that he is on hospice care now. If you would like to send a kind word to his family, you can do so here: https://www.facebook.com/projectteamjonny

Why You Should Care About Research BEFORE You Are Diagnosed

Uncategorized

Cancer Research

I’m still a relative newcomer to the world of cancer. Prior to my son’s diagnosis in 2010, our family had not been affected a lot by cancer, and I thought it was mostly treatable/curable these days. There is certainly a lot of media that would make us think that. Lots of big cancer groups touting the cure rates that have improved over the years. And it’s true, cancer rates have improved, but the treatments are still toxic and cause life-threatening complications during treatment and for years to come. And the most deadly cancers have seen very little, if any, improvement in the last few decades. DIPG, the cancer that killed Neil Armstrong’s daughter in 1962, is still taking the lives of our children every day, and we have virtually no way of stopping it.

So what happens to a patient who has a disease like DIPG, with no known cure or effective treatment? There is usually some treatment – given mostly to aid their comfort. They may choose a clinical trial, but so little is known about this disease that those trials are largely ineffectual so far. How do we bring about change for the children and adults who get a “rare” cancer or disease? This question used to keep me up at night. For the 20 months that my son fought brain cancer, I did everything I could think of to try and push research along faster. Friends and family did fundraisers for those big cancer groups. We visited Senators and Representatives in DC. For the last five years, we’ve continued to work in those same avenues, all while also starting to work on something entirely different.

How do we speed results? Researchers will tell you they need greater access to high quality data. Simple, right? Well, not really. You see most hospital/university systems are not willing to invest in any infrastructure beyond their own. It boils down to a return on the investment. How do they justify spending money on an infrastructure that helps what is, in essence, their competitors?

When this idea first came to us, we thought we would literally be building a server farm somewhere in Western Kansas to give researchers access to the kind of data they needed. It turns out, we didn’t have to do that. Why? Because there were lots of other people having the same thoughts as us.

Researchers at multiple institutions who wanted to share, but didn’t know how. Foundations who were willing to fund projects that would collect high quality data. Patients and families who demanded that their information be released to a wider audience. When we formed Dragon Master Foundation, we did it because we thought we were going to have to go it alone. Before we even had our 501(c)(3) paperwork in hand from the government, we had established a partnership with the Children’s Brain Tumor Tissue Consortium. At the time, that was 4 hospitals. It has now grown to 7 hospitals with several more in the on-boarding process. There are a number of foundations supporting various aspects of the sharing process. The database is built. A pilot is underway and is nearly ready to be pushed into the web for greater access to the research community. Not just at those 7 hospitals, but there will be access for anyone who wants to do research. This is not a group of hospitals who have agreed to share information with each other. It’s a group who have agreed to share information with the world. It’s patients and families who have agreed to let their information help find a cure. It’s administrators who take the time to make sure the data is entered completely and accurately so we can garner the very best results. It’s foundations who have taken ownership of the process and are funding the process to bring this to life.

I look back on all that I’ve written here, and I know I have only scratched the surface of what I want to tell you… what you need to know about how important this is. I truly believe this database is the single most important thing in medical science right now. Everyone likes to use the buzz words “precision medicine”, but that is a largely useless term without the data to back it up. This is that kind of data. This data will change the world. Not maybe. WILL. It can do it soon. Or it can do it in 15 years. I want to do it now. Right now. Because right now, a little boy named Ryan is so swollen from steroids that his friends can no longer recognize him. And though he is battling to survive, his best shot is a miracle.

Right now, little Jonny stays home while his twin, Jacky, goes to school because there is nothing further they can do for him. Right now, Candace and Kaitlyn struggle to go to work every day because in spite of debilitating headaches, they have to make a living. Right now, Tom, who was flying jets just a few months ago, is learning how to walk again in hopes that they will find a way to keep his tumor from growing. Out of these people, I only knew one prior to their diagnosis, but I can tell you it came completely out of the blue to every single one of them. And when it happens in your family, you wonder why you didn’t get involved sooner. You’ll wonder if you had, would it have made a difference for you loved one? If you had pushed for innovation sooner, would they suffer less? Would they still be here?

What would it be like, for example, if I had asked myself these questions 10 years ago, instead of five? Would David still be here? Let me just tell you that these are not questions you want to live with. We supported charities – lots of them – before David got sick. I’m very proud of the work I did with the Cal-Diego Paralyzed Veterans Association. We gave to Make-A-Wish, and donated to so many other causes that I will never run out of mailing labels for as long as I live. Those donations made an impact. I know that lives were changed because of it. But none of that comes close to this. This has the potential to touch nearly every life in America. Data like this, that will exist in a perpetual database, will help people now and into the foreseeable future. It could easily help researchers make discoveries about diseases other than cancer. We could literally change the world! But we can’t do it alone. We need your help. We need you to make a financial commitment if you can. I feel like one of those old-time preachers passing the collection plate, but it’s too important for me not to ask you directly. Please help. Please do it so we can start telling these families that there really is some hope.

We have a cool new partner that makes online donating faster and easier than before. It also helps you keep track of what we are doing and interact with people who care about finding a cure. If you would like to make a donation to help us launch this new platform, go here: https://we2o.org/charity/dragon-master-foundation

That company also lets employees donate their leave time, so if that is something you are interested in, please let us know. We can start a conversation with your company about making that a benefit for everyone.

What No One Will Tell You About Clinical Research

Uncategorized

IMG_6959

Precision Medicine initiatives start with a sample, be it blood or tissue, some type of specimen to give scientists the genomic data they need to work from. Traditional clinical research starts with specimens that need to be sequenced, then work is done in model systems (cell or animal), before finally being published in journals.

Right now, being published in a medical journals is a competition. The first to discover and publish are almost always the ones to get funded. So the scientists with the most data tend to be the ones with the most funding. The reason adult studies get funded so much more often that pediatric ones could boil down to a reason as simple as that. There is simply not as much data, or institutional infrastructure, around pediatric data.

The labs that get funded are the ones with the most data published. But what if we could flip that model? What if we rewarded researchers for sharing that initial raw data? What if researchers empowered each other instead of having to compete for the same research dollars?

Dragon Master Foundation was formed with the purpose of building an infrastructure for sharing data between researchers, but we’ve learned that the problems are more intrinsic than that. Scientists are pushed to publish their work, but in order to get it past peer reviews, they often simplify the work so much that their results can’t be replicated. Over time, we’ve created a system that virtually requires all researchers to work independently, first because of funding, and second because they can’t simply pick up where someone else left off.

The more I learn about how our researchers have to fight for resources and funding, the more concerned I am. It also makes me that much more motivated to fund a new system. A system that rewards researchers for working together. A system that empowers them to do better work with faster results. A system that will pool resources instead of building data silos.

We want to encourage foundations to put their funding behind researchers who are willing to share data. If we want to break down the walls between the silos, we have to reward the ones who are doing it. We need to stop sending our dollars to institutions who won’t share. We need to empower the work to be done in the cloud where it can be interactive. We need to treat tissue donations as the rare and valuable resource they are, and give them a place where they can be accessed for future generations.

People seem amazed at how quickly we have grown, but it is because of the foundation built by the groups who came before us. We didn’t have to start from scratch. There were already visionaries out there who just needed help to take things to the next level. We recognize and applaud the efforts of the nonprofits who have been building tissue banks and funding sequencing of those biospecimens. We commend the hospitals who took those first shaky steps out into the frontier of collaboration. Most of all, we thank the technology pioneers who have made this type of global collaboration more than just a dream. It is becoming a reality, but the timeline depends on all of us. We have a database that is ready to be used by researchers. What we need is the funding to put it into the web and grow it to include as many records as possible. Each record that we can add empowers the data a bit more and puts us into a space where big data analytics can begin to transform research and medicine. It is what we need to truly empower personalized medicine.

You may not think that you have the power to affect medical research. You might not be a scientist or a doctor. Well, neither am I. But I’m driven to keep families from knowing the devastation ours has known. You CAN make a difference, and oh, I hope you will.

Dragon Master Foundation has a 5K this weekend in Wichita, KS, but if you can’t make it, you can still participate as a virtual walker or runner. That will get you one of our super cool Tiki medals. Or you can host your own event. Or volunteer. Or spread the word on social media. Every action you take makes a difference.

An Admiration of Breasts

Uncategorized

I had the honor of meeting Mark in DC last month. I always appreciate his blog posts, but none more than this. Please get involved. It doesn’t matter how busy you are. You can register your grocery shopping card to benefit research, or recycle, or just post more on social media. Every action brings us more awareness and closer to the cure.

Life in Portsong By Mark Myers

Like a pimply-faced teenager, I find myself once again consumed with breasts. It has been nearly 35 years since I went from a jostling, happy 12 year-old to a smug, confused teenager who finally noticed there was a difference between his buddies and the girl next door. Ah, Dawn Holstead. For so many years, Dawn played the same sports and games the rest of we boys did. She pretty much dressed like us and besides having longer hair, she looked a great deal like us. Since it was the 70’s, even shaggy hair wasn’t a great differentiator.

Then one day, I noticed she was…different. It was like something grew overnight. Yes, Dawn had started her inevitable change into a woman. Things got really dicey after that. Her ascent into womanhood was very inconvenient in the neighborhood because she decided to go all out and be a girly-girl instead of our fourth man. Two-on-two basketball became one-on-one with someone sitting out…

View original post 860 more words

Breast Cancer Resources

Uncategorized

If you’ve read much of this blog, you know I’m pretty focused on pediatric brain cancer. That’s our starting point, both from a family’s perspective and from building of the database. But I have several friends in different stages of breast cancer diagnosis/treatment right now, and I really believe that our database will advance to the point where we are helping them, too.

For the moment, though, my resources don’t really extend into that world much. So I thought I’d reach out to the readers to see what words of wisdom you may have to share.

I found this website that I like: http://www.breastcancerdeadline2020.org/breast-cancer-information/quality-care-guide/access/getting-comprehensive-care/?referrer=https://www.google.com/

It’s got a good overview of what to look for when choosing a doctor, but there’s always more to it than what shows on “paper”. So here’s your chance to let us know what went well (or what went wrong) with your experience with breast cancer. Please comment with your experiences so we can help each other.

And yes, it is still Childhood Cancer Awareness Month, but cancer doesn’t wait for the appropriate month to rear it’s ugly head. I will take this one more opportunity, though, to ask you all to please vote (or continue voting) for Dragon Master Foundation on Instagram and Twitter. You can vote once per day until 9/23 on each platform by posting these tags: #vote #UpgradeYourWorldUSA and @dragonmasterfdn

If you’re an overachiever, you can also vote for our Australian friends by using: #vote #UpgradeYourWorldAU and @braintumourahoy

And you can still add: #HonestLovesMax to any Tweet or Instagram post through the end of the month.

Today is Special

Uncategorized

THIS FACE

If you are reading this, then you have access to the internet. You have vision (or a really good adaptive reading program). You have some discretionary time. You can make a HUGE impact on the world today. How? Just make a Tweet and an Instagram post for these causes:

  1. For Dragon Master, post: I #vote for @dragonmasterfdn to #UpgradeYourWorldUSA with the power of #bigdata
  2. For Max Love, post: #HonestLovesMax
  3. For Miss New York, post: Miss New York #MissAmericaVote

What will those three things do? 1. You could help win $50,000 for cancer research. 2. Every #HonestLovesMax post gets $1 donated to the Max Love Foundation 3. Miss New York has chosen childhood cancer as her cause, so she will bring a national voice to these suffering kids.

You may not think this is a big deal, but it is! Let me tell you why. This kind of project (internet/social media voting) doesn’t get a ton of attention. People vote once or twice and don’t vote steadily until the deadline. So it the prizes are sort of up for grabs until pretty close to the end. One big push from any particular group could see them leap ahead of the others. We have had consistent support, but the Upgrade Your World contest doesn’t end until 9/23. It is crucial that we continue to add supporters as the contest goes along. So please set a reminder to vote every day. And please ask your friends to vote. Ask multiple times because most people won’t see the first post. (They say the life of a Tweet is less than 3 hours, so you could post several times a day, and still not be seen by all your followers.)

If you want to help, but you aren’t sure how, then let me know. I’d be happy to help you get up to speed!

P.S.

The Miss America Vote ends today, but you can vote for Dragon Master Foundation until 9/23 and tweet for Max Cure until the end of the month.

People You Need to Meet : #46 Holly J. Gainsboro

Uncategorized

What I wish I knew before my late husband was diagnosed with a brain tumor…

My husband, Steven, was diagnosed with an incurable brain tumor on February 12, 2009. We were blindsided by this news – his primary care physician said the MRI report showed a cyst or abscess and sent us to a local neurosurgeon. We sat in the examination room prepared to hear that it was nothing to worry about…..what we heard was “you have a malignant brain tumor”…and then all I heard was “wah, wah, wah” (similar to what the   adults sound like in the Charlie Brown holiday specials on TV). Sharing the news with our children, other family members and friends was excruciating – how do you tell a 12 and 16 year old that their father has a mass in his brain that needs to come out? We spoke carefully with our children and gave them only the information necessary – Daddy has something in his brain and will have surgery. He will be fine! Not sure if they bought it or not, but they have both shared that they were grateful that we didn’t go into further detail with them and were optimistic about the outcome and longevity of Steven’s life.

I kept to myself for quite some time as I needed to muster my strength and hope in order to keep him with me and our children for as long as possible. I did extensive research on the disease and its treatments. I traveled back and forth to Duke’s brain tumor center and hospital with Steven, and I tried to maintain our lifestyle and acclimate to our new normal. At the suggestion of our clergy, I created and maintained a Caring Bridge page so that family and friends could follow our path. When, after 7 or 8 months post diagnosis, the myriad of emotions coursing through my body became more than I could handle I finally sought out others who could possibly understand my experience. I began an online search for support groups. I came across a few but www.cancercompass.com drew me in. It was there that I found so many who seemed to be living my life – my beautiful, yet painful life. A life of uncertainty, a life of hope, a life of fear, a life of “this can’t be happening” and “nobody knows how I feel deep in my heart, nobody!” I no longer felt isolated as I shared my own stories, asked my own questions and provided answers and comfort to others.   Once I allowed myself to open up to these women traveling this same and yet different journey, a life-long bond was formed – a sisterhood. As author, Rachel Naomi Remen wrote “Everyone alive has suffered.  It is the wisdom gained from our wounds and from our own experiences of suffering that makes us able to heal.  Becoming expert has turned out to be less important than remembering and trusting the wholeness in myself and everyone else.  Expertise cures, but wounded people can best be healed by other wounded people.  Only other wounded people can understand what is needed, for the healing of suffering is compassion, not expertise.”

Steven and I already knew that there were many gifts that come with a cancer diagnosis – yes, you read this correctly, there are gifts, but one has to be open enough to recognize them. The gift of waking up beside one another each morning and going to sleep together every night. The gift of sharing our love with each other and our children. The gift of being able to say all the things we wanted to say (of course, there is never enough time to say it all but we shared a lot with one another over those 22 months), and the gift of being part of a community – a brain tumor community. I cannot imagine how I would have managed through the remaining year of Steven’s life, as well as after his death, without my GBM soul sisters. English novelist, Mary Anne Evans, better known as George Eliot said “What do we live for, if it is not to make life less difficult for each other?”

One cannot travel this road of illness and caregiving alone… it takes a village, truly. I am eternally grateful for my internet village and my local village. As I write this six and half years years post diagnosis and four and half years after Steven’s death, I still recognize the blessings that come with this life I am living. My local community and my internet family made life less difficult and offered me refuge when I needed it most.

For anyone caring for a loved one with a life threatening illness, you do not need to struggle alone. There are those waiting in the wings wanting to help, love, support and guide you. Be gentle with yourselves as you learn to navigate your “new normal”. There are so many just like you wanting to be comforted and wanting to comfort. Trust that your journey will bring you to those people.