Breaking the silence

Uncategorized

So much of what happens to cancer families happens in silence. You may see social media posts, but they do little justice to the minute by minute terror that is constantly plaguing these families. A recent post by a Facebook friend gives a pretty good picture of the reality, so I’m sharing it in honor of Childhood Cancer Awareness Month.

Childhood Cancer Awareness Month Day 18: madness

Watching your child lose their abilities day by day, or even faster, right in front of you. Seeing the incomprehension in their eyes and, besides showing love and hollowly saying everything will be ok, not being able to truly make anything better.

After your child’s tumor progresses and your doctors stop returning your calls. True that they don’t have any more answers but so heartless nonetheless.

Hearing the stories of friends and family who came over to cook meals, clean house, babysit, take photos, launch fundraisers, play music, spend countless hours doing research and speaking with doctors on that other family’s behalf..then comparing this to your own reality.

When after an hour of coaxing and coddling your child manages to get down the pills you hope could help extend their life only to throw them all up immediately after—bad hiccup timing or stubborn refusal? The outcome is the same.

Being denied clinical trial access and off trial medications that could extend your child’s life, due to bad timing, lack of clout carried by your medical team or more often the company/trial’s cold blooded decision to prioritize obtaining future data points over the life of your child.

Cackling madly to the ceiling when faced with yet another setback, ankle deep in the latest bodily fluid that needs disposal before you can even begin thinking of cleaning your house that looks like a) war zone b) crime scene c) hoarder’s lair (pick whichever fits best).

Dug deep furrows in both wrists watching my love get re-radiated today, head bolted tight to the machine, as we fight two tumors this, our last, time around.

Finally dozing off to sleep before being jarred awake by a bizarre sound coming from my child’s throat which sounds like ghastly choking, only to be reassured by the tone of her voice (words are now too indistinct to understand) that she’s actually ok, it was nothing.

These are just a few of the stones in the DIPG path that trigger madness.

This is how it feels at the moment….and my beloved child is still here, for now.

The alternative is unimaginable.

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.

 

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!

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.

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.

Sometimes Choosing A Cancer Treatment Isn’t The Toughest Decision

52 People To Meet Posts, Uncategorized

 

Addison

Addison Adams

 

Hearing that your child has cancer sends your world into a tailspin. Hearing that they have a lethal form of brain cancer that really has no treatment path is devastating. It’s the kind of thing people carry with them for the rest of their lives.

One form of brain cancer, DIPG, has been had very few treatment advances in decades. A big part of the reason for this is that so little is known about how the cancer develops and grows. Typically, biopsies are not performed because of the tumor’s brainstem location, and what scientists do learn is often from tissue taken after a child has passed away. That is an issue, too, because it is a difficult conversation for most medical practitioners to have with these already vulnerable families.

We reached out to a very generous family who donated their daughter’s tissue to research, and they agreed to share their story. We hope that it will inspire others to think about whole brain tissue donation.

Interview with Kindra Adams, mom to Addison

When did you first start thinking about donating Addison’s tissue? 

Addison’s father and I knew from diagnosis that one way or another Addison would be tumor free.  We learned more about tumor donation after a Facebook page for Katherine The Brave posted about it.

Yes, Katherine the Brave’s page is well known in childhood cancer circles. Did you discuss the donation with people in your family and friends?

Yes, we discussed it with family and friends.  Everyone seemed very supportive of our decision.  We were going to do it no matter what, but it helps to have everyone on board.

Do you wish you had known more about tissue donation sooner?

Yes, it seems like information on donation is pretty hard to find unless you know about it already.  If it wasn’t for Katherine’s page, I’m not sure we would have known anything about it.  I’m also not sure we would have been real receptive to it if someone approached us. That’s what makes it more difficult to get the information out there.

What were your biggest concerns around donating her tissue? My biggest concern was that it wouldn’t grow.  That after it was removed and transported, that would just be the end.  I really wanted it to survive and hopefully help someone.  I know it might sound unusual, but I was also worried about how it would affect her appearance.  We wanted to be able to have an open casket, and it was nice to know that the incision wouldn’t be visible.

As a mom of a child who died from brain cancer, I totally get that. I don’t think it is an uncommon concern at all. Parents want to protect their child in every way, and this is no exception. Who answered your questions about the process? Dr. Monje .  We had been in contact prior to this because I was looking for clinical trials for Addison.  When I finally sent her the e-mail about donation, she set up a time and called me.  She explained everything, and we stayed in contact.  Even to this day, I can send her an e-mail and see how everything is going.

Dr. Monje’s lab contributes data to the open access data platform called Cavatica. Although Dr. Monje’s lab commits to putting 75% of the tumor tissue they receive into this platform, it is possible that Addison would have been part of the 25% that did not get shared. You were able to verify with Dr. Monje that Addison’s tissue was indeed shared, though, which is really cool.

Did you know much specifically about what her tissue might be used for?  Yes and no.  I know at the time of our phone call, Dr. Monje gave me lots of information. Unfortunately, my memory retention hasn’t been the best lately.

Yes, memory retention is frequently a problem during the grieving process. I definitely had some issues with that, too. How does in make you feel knowing her tissue is in the open access database, Cavatica?  Honestly, I’m thrilled that Addison can be a part of something this important.  We have learned that Addison is in the 20% of DIPG kids that are lacking a particular mutation so that makes her part in Cavatica even more important.

As a parent who also has a child with data in Cavatica, I can say that it does give you some comfort to know that their tumor tissue may help save another child’s life one day. 

Cavatica is the platform for data sharing that will be used to empower an upcoming DIPG trial being launched by the Pacific Pediatric Neuro Oncology Consortium. You can read more about that here.

 

 

3 Changes Coming To Clinical Trials

Lessons Learned, Uncategorized

Clinical Trial Changes

If you have a “rare” cancer that doesn’t have a great standard of care, chances are you will be offered a clinical trial. To the general public (which is who we all are before that diagnosis is presented) clinical trials sound like a scary thing. To a cancer patient being told there is no cure, a clinical trial is a lifeline being tossed in a stormy sea. IF you catch it, it MIGHT help save your life.

So how do you pick a clinical trial? Well, first you have to find one that you qualify for. We’re going to assume that you have a doctor who is really helping you and is presenting you with some choices. So you have a couple of clinical trials and the “standard of care” to choose from. How do you decide? Right now, it’s a guessing game, but all of that will be changing rapidly as technology and open access data become more commonplace in the process.

  1. You will have more concrete data to help make decisions. I have seen some pretty impressive technology being developed by Clalit Research Institute in Israel that will help a doctor walk through a list of weighted questions with a patient that will help them make this difficult decision. (That program was developed using data made available from a clinical trial, and as more data becomes open access, I think we can expect to see more applications like this developed.) Each patient will be able to rate a list of possible side effects and based on their feedback, an algorithm will provide guidance on particular trials.
  2. You will know more about what “successful” patients look like. As data begins to become collected in one place, it is easier to compare patients on a genomic level. Researchers will be able to compile profiles of successful patients to help determine who has the greatest chance of success on a trial. My son participated in a clinical trial where one patient was doing really well. We had no idea if David would have the same results because there was very little data to tell us why the first patient was successful.
  3. The system will start to find you. Right now, clinical trials are found largely by patients and doctors sifting through websites like clinicaltrials.gov to find possible trials. In the future, doctors will enter your information into the computer, and then you will be pre-qualified based on your exact diagnosis and personal information. The computer will then present a list of potential trials that you can choose from.

This all might sound a little too good to be true, but the fact is, the infrastructure is already in place. Cavatica.org is an open access research platform that Dragon Master Foundation and others have been funding for more than three years now. It houses a patient’s full genome and biosamples from the patient, and sometimes the patient’s parents. It also links to the patient’s clinical records so we can have a longitudinal view of that patient. I believe it is the single most complete picture of a patient you can get, and we are working hard to make it available to everyone. (At the moment, it is largely working with pediatric brain cancer data, but the platform is built to expand as funding becomes available.)

Data like this can take a lot of the fear and guessing out of treatment, and it should lead us to more successful treatments and cures. We are on the cusp of a meaningful shift in cancer care, and I’m excited for this to start really impacting patients lives.

What is Your Field of Dreams?

Uncategorized

Field of DreamsIt occurred to me today that I don’t really get to talk to our supporters enough. Working on Dragon Master Foundation has turned into a full-time volunteer job for me, and most of the time, my head is down on one project or another. The work doesn’t stop coming, but I am so thankful to be in this position – doing this on behalf of cancer warriors. I wanted to stop for just a moment today, and let you know what your support has made possible this week. (And yes, it is only Tuesday!)

You helped give encouragement to a researcher who has developed a program around brain tumor tissue donation. We will be sharing a lot of his work over the next few months, but sometimes, they just need to hear that their work matters. As he told me about the extremely sacrificial gift he works with in his lab, I could hear the emotion in his voice. Tears gathered in my own eyes as I thought about the sacrifice our family has made, and I hope you all know that giving families this final way to make a difference is a truly valuable gift.

You helped gather feedback on the recently launched research platform, Cavatica, from a man who has dedicated most of his nearly 70 years on this planet to cancer research. He spoke with wonder in his voice of the things he is able to accomplish with this technology – things he never thought possible!

You helped give hope to a group of innovators who are developing a big data algorithm that can make treatment recommendations based on a patient’s DNA. They had been struggling to find the amount of data needed to test their theories, and now they have a source for their work.

These were conversations filled with hope, and that is what we are funding. When we started Dragon Master Foundation, it was because we had some audacious ideas about how to help researchers. Less than four years in, we have accomplished so many of the goals we set out to achieve. There is a real-time, open access platform where hospitals can share genomic and patient data. As I type, there are more than 15 hospitals sharing that data with agreed upon data standards. That alone is more than most people thought would be possible. Like the movie Field of Dreams, this is a real life “if you build it they will come” situation.

Which leads me to the best kind of problem to have. We can’t seem to fund the progress fast enough. We have delivered a tool to the nation’s top doctors who are eager to use it, but we need to fund the data to go inside. Putting the data into Cavatica means truly empowering precision medicine. It means we will be on our way to saving lives. If you’ve ever faced cancer, for yourself or a loved one, then you know that today matters.

There’s another great quote in Field of Dreams that applies to this situation. Archie Graham says, “We just don’t recognize life’s most significant moments while they’re happening. Back then I thought, “Well, there’ll be other days”. I didn’t realize that that was the only day.” It’s easy to let days slip by without taking action, but one day, there won’t be any more chances. We have to seize the opportunity now! Not because there won’t still be data to add tomorrow, but because there are lives being lost today. Every day is life or death to someone. So let’s work with urgency now to save more lives tomorrow.