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.

Arms Open

David's Journey, Lessons Learned

I was listening to a song today, and I wanted to share it with all of you. This song immediately resonated with me because David was always ready with a hug for anyone who needed it. They feature people in the video who were placed into foster homes, and the imagery for that group is strong.

For me, though, this song exemplifies what our brain cancer family is like. None of us want to be here, but now that we are, we are stalwart in our support. You are not going this alone. We are here. We care.

You may face rounds of chemo, the pain of side effects or the disease itself, and nearly everyone has a crisis of faith. Doors close without others opening. We can’t stop the bad news from coming, but we can be here by your side to see you through it.

All of that is said so much more eloquently in the song, “Arms Open” by The Script.

I can’t unfeel your pain
I can’t undo what’s done
I can’t send back the rain
But if I could I would
My love, my arms are open

So when you feel like you can’t take another round of being broken
My arms are open
And when you’re losing faith and every door around you keeps on closing
My arms are open

I can’t uncry your tears
I can’t rewind the time
I can’t unsay what’s said
In your crazy life
My love, my arms are open

Oh, and when you’re cursing at the sky
And thinking, “lord, you must be joking”
My arms are open
And, and when you’re looking in the mirror
Thinking that, “my life is over”
My arms are open

My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)

So let me do to you
What you’ve always done for me
And let me be the ground
Underneath your feet

I can’t unfeel your pain
I can’t undo what’s done
I can’t send back the rain
But if I could, I would
My love, my arms are open, arms are open

So when you feel like you can’t take another round of being broken
My arms are open
Oh, and when you’re losing faith and every door around you keeps on closing
My arms are open

My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)
My arms are open (oh, oh)

I will be standing here
I will be by your side (my arms are open)
You see me loud and clear
With my arms open wide (my arms are open)
I will be standing here
I will be by your side (my arms are open)
You see me loud and clear
With my arms open wide

My arms are open

You can watch the video here:  https://youtu.be/vOKOamXsXYE

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.

 

Can Zika Really Cure GBM? Experts Weigh In

Lessons Learned, Uncategorized

3D Image of the Zika Virus from WikiMedia

For most people, trying to navigate the world of new cancer treatments is not easy. The media reports on new discoveries like they are already viable treatments, and patients are often confused as to why they can’t access things they hear about on the news.

We’d like to help brain cancer patients and their families understand these discoveries a little bit better. The first step is really to understand that there is a big difference between what can happen in the lab and what happens in the human body. The lab gives us our first indications that something is worth exploring, but however promising something is in the lab, in the human body that path can lead to many things — from healing to death.

As our first example in what we hope will be an ongoing dialogue, let’s look at the Zika virus news. You’ve probably seen headlines like “Employing Zika Virus to Treat Advanced Brain Cancer” and “Zika Virus Targets and Kills Brain Cancer Stem Cells”. That sounds great, right? Who wouldn’t want to jump on that?

Unfortunately, these are still lab studies, and have a long way to go in proving safe and effective in humans. For some clarification, we reached out to Dr. Cheng-Ying Ho, MD, PhD, at the University of Maryland School of Medicine. Dr. Ho has done some work with both the Zika virus and brain tumors.

Dr. Ho states, “The misconception about Zika originated from the earlier cell culture studies showing Zika preferentially infects neural stem cells. However, the cell culture system is an oversimplified model. It doesn’t have glia or inflammatory cells like human beings.”

She goes on to say, “Mouse models are a lot better, but most of the mice need to have a weakened immune system before they can be infected. Therefore these mice don’t have the immune response against the virus. It is also an artificial system.”

Many times, doctors and researchers are afraid to share preliminary results from studies because the general public may draw the wrong conclusions. Dr. Ho seems to share that concern. She states that her biggest concern about this seemingly promising strategy is the possibility of developing meningoencephalitis. Meningoencephalitis can be fatal and it has occurred in adult Zika patients.

Dr. Ho ended our interactions by saying, “The concept of using Zika virus to treat glioblastoma is very creative but may be difficult to be put into practice due to the possibility of fatal uncontrollable side effects.”

We also talked to Dr. Javad Nazarian of Children’s National Health System because of his work on pediatric brain tumors. He said that the issue is more complicated in children. “A child’s brain is constantly growing and making neuronal connections. It is an active environment and any time we apply drugs that indiscriminately target tumor AND healthy cells, we could potentially do more harm than good. That is why laboratory findings need rigorous testing and multiple validation steps before they have clinical benefits.” He went on to say that this is one reason that discovery and validation of effective treatments takes time.

Obviously, there are labs who are very interested in pursuing Zika as a possible treatment agent. We know that creative measures will be needed to combat GBM and other aggressive brain cancers, so we will continue to hope that one of these creative solutions will turn out to be a viable solution in humans. Will that be Zika? It seems to be too early to say, but for now, patients should not expect this to be a treatment that would be offered soon.

Note: This article is not intended as medical advice and you should always seek the opinion of your physician before starting or stopping any new treatment. Blog post was first published on Medium.com.

 

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.

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

How do you answer the hard questions?

Lessons Learned

Whenever I talk to a family about brain cancer, I tell them they can ask me anything. Normally they ask me sensitive questions about the end of life or navigating treatment. But sometimes, tougher questions come out. The toughest one is “how do you go on without your son?” There are many answers to this question. First, would be that my other family members need me. But second would be that my son would want me to be there for these people. It doesn’t make it any less bone-crushingly sad. On the contrary, walking through hell with these families is horrific and hard. It’s been six years since we heard the words brain cancer, a little more than four since David was taken from us. And while many point to the successes of the foundation and the progress in research that we’ve helped with, I can’t see that. All I see is the next person in treatment with no clear treatment path. I’ve been a fairly selfish person for most of my life but now all I see is other people’s need. David always had that sight so maybe he passed some of it along. 

Right now, somewhere a family is agonizing over their loved one’s last breaths. Right now, somewhere a family is hearing that the diagnosis is terminal. I know there will always be freak accidents that steal our loved ones away, but cancer isn’t like that. It’s a disease that we are on the verge of finding cures for, but each day that passes steals away another life. 

People struggle with the meaning of life, but I know that the thing that gives my life purpose is making the way easier for others. That used to be through simple things like doing my job well or making lunch for a teacher at school. Now it is by helping push scientific research forward. And I can do that even though I made a C in Mrs. Coley’s Chemistry class. And you can do it, no matter what your background is. We all have power. We all have a voice. Let’s use it to end cancer now. Right now.

Brain Cancer Action Month 2016

Dragon Master Foundation, Uncategorized

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I had big plans to be super organized heading into May this year, but for various reasons, it just didn’t happen. So here we are, on May 4th (Star Wars Day!), and I’m just now making a post about all the ways you can get involved this month. There was a big event on May 1st in DC, Race for Hope, so I’m sorry for not getting word out to all of you in time to participate in that. It was only the first of many events this month, though, so without further delay, here are some ways you can get involved:

Wear gray. It’s the most simple way to show your support. Grey is a pretty bland color, though, so to really get people’s attention, you might need to draw some attention to yourself. Maybe some crazy hair, or a Hawaiian shirt on top of your grey… something te get people wondering what’s going on with you. 😉 You can even take a gray selfie and enter to win a prize!

Change your profile picture. Make your profile image go gray this month. Need some inspiration? Check out our Pinterest board.

Support on online fundraiser. Maybe you’re busy. We get that. So skip coffee or drinks for one day and donate that money to an online fundraiser. You can find some worthy places to donate at these links:

Sponsor a runner in California here , here , here or here

Sponsor Runners in Iowa

Sponsor a runner in Kansas here or here

Sponsor a runner in Pennsylvania here

Sponsor a runner in Virginia

Go to an event! This one is a little bit trickier because the events are in specific geographic locations, but if you can make it to one, please do! The folks that organize these events put a lot of hard work into them, and it physical events can be a real boost for survivors. I’m listing the ones I could find by date and then location.

May 14th

4th Annual Race for Hope DSM – Des Moines, IA

San Diego Brain Tumor Walk – The Waterfront Park, San Diego, CA –

May 15th

Comedy Night – Hollywood, CA

12th Annual Team Billy Ride & Walk for Research – Saratoga Springs, NY

Boston Brain Tumor Ride – Waltham, MA

May 21st

CureFest 2016 – Humble, TX

Bay Area Brain Tumor Walk  – Crissy Field, San Francisco, CA

Charleston Brain Tumor Walk – Mount Pleasant, SC

I am sure I’ve missed a lot of events for the month due to lack of research time. Do you have an event or activity to share? Please add it in the comments!

#MomentsofMagic

Dragon Master Foundation, Uncategorized

Cancer can be one of life’s most difficult challenges. It has brought more pain to my life than I care to remember, but it has also given me great awareness of the little moments in life. I think it teaches a lot of people about gratitude, frequently in ways we wouldn’t imagine. I know trying to imagine what it is like to live with a cancer diagnosis can be overwhelming, especially if you think about it being your child or other loved one. It’s sad and scary, and well, I don’t want to think about it either. But I do want to bring attention to the need for research. I want you to think about ways we can cure cancer. I want you to think about it all the time – like those of us who have been faced with it in our daily lives.

But how can we think about it, and act on it, without being overwhelmed by it? After talking with a lot of folks, I think I found a way to shed some positive light on the issue. We’re going to start a sort of gratitude journal, where we can focus on those little moments that are good, that are special because they are so normal. We want you to see how grateful cancer patients and their families are for those little things.

So here’s what I need from you. I need you to start sharing those moments with me, so that Dragon Master Foundation can share them with the world. We’re going to call them #MomentsofMagic . They can be anything you want – as long as it was a moment that was special to you as a cancer warrior, caregiver, loved one or friend. We’d love to share pictures with the stories as well, so send whatever you would like to share to amanda.haddock (at)dragonmasterfoundation.org.

Together, we can focus on the positive. As Dumbledore would say, “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

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