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.

In case “warm fuzzies” aren’t enough

Dragon Master Foundation

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

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

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

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    T-shirt and vinyl cling design

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

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

 

 

Leaving an impact on the world

Dragon Master Foundation, Uncategorized


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

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

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

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

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

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

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

Maybe I Should Take Up Surfing

Lessons Learned

The funny thing about grief is you never really know when it is going to hit. You prepare for milestone dates, and they pass with hardly a tear shed. And then someone makes a random comment or you see a person with a certain look and BAM! You are slammed by a wave of grief right into the bottom of the ocean. Daylight doesn’t even filter down that far. You are lost, grappling for something – anything – that will point you toward the sky. It feels like forever before you break through the surface and take that first full breath again.

You bob there on the surface, treading water, and wondering how you actually managed to float again. The darkness is still down there, pulling at your feet. But somehow, your head is clear. You can breathe and the sun beams down on your face. There is promise in those warm rays, even as you can still feel the cold depths below.

I’m not sure if I’ll ever be on solid ground again. It feels like grief will never let you past the shifting sand on the shoreline. But I do know that there is always the sun. Some days strong, some days hiding behind clouds, but always there to give you a ray of hope. Maybe one day, I’ll be able to ride on top of those waves and feel the sun all the time.

People You Need To Meet #40: Margret Murphy

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The story:

It started with a phone call from the school nurse, saying my son had fallen down while running in gym class. At age 13, I assumed that could be any number of things: growing feet, lack of water, the heat. Thinking nothing of it, my son continued to complain of intermittent issues – weird whooshing sounds in his ears, random projectile vomiting, and earaches. All of these are common things when a teenager goes back to school and begins picking up bugs. Normally very clean and particular, I noticed he began spilling food and leaving it, not caring. He would be completely oblivious to food on his face, and when I pointed it out, he seemed uncaring. There was more tripping and falling, and again, nothing abnormal for a growing teen.

Finally, annoyed with all, I took him to the family doctor to check his ears. She did the usual checkup, but I noticed a look of concern on her face. She said she wanted to order an MRI, just to make sure. Understanding the cost, I was hesitant, and when I received the phone call just a day later, I tried to talk them out of it. However, it was scheduled, and it was not my call, so reluctantly we went.

Halfway into the MRI, the technician came and informed me they would be injecting him with something so they could see more clearly. He had a strange look on his face. The MRI was completed, and we went to the waiting room to wait for the next test, a thyroid test. All of his symptoms led me to believe this was the beginning stage of a disease common in his family history. We were then called in to the next office, and the nurse had difficulty finding out what test to take. She called the family doctor and hung up slowly after the conversation. Looking at me confused, she said my son had been admitted to the hospital, and we were to go as soon as possible. She asked us to please go wait in the waiting room for further instructions. The phone call was received, and I was told my son had a brain tumor. He needed to go to the hospital for brain surgery ,and he would have some sort of device inserted from his brain to his stomach (what I later learned is a shunt, which helps drain additional fluid out of the brain so that it does not create too much pressure, known as hydrocephalus). In complete shock, I broke down sobbing in the waiting room, where several other patients (most likely in varying stages of cancer) stared at me with sympathy, understanding that we were now entering their world.

My son, oblivious, walked out the doors with me, making me stop to look at the beautiful water fountain with his large spacey eyes. We walked into the parking lot, and having no clue how to tell my son the news, I blurted out, “You will not be going back to school today. We have to take you to the hospital for brain surgery”. He hugged me tightly, two sobs shook his body, and he went right back to normal. We started off toward the hospital, and then I realized we probably needed to come home and get some things first. He asked for a shake, and we stopped and got him one.

I don’t recall much of getting checked in. I recall sobbing uncontrollably, while my son sat on the bed, as calm as could be, as we waited hours for the surgeon to explain the situation. Interns and nurses came in to do various prepping and stopped to play video games. The surgeon finally arrived and showed me two masses in my son’s brain. They could not operate on the tumor, as it was a risky area being on the brainstem. He also showed me a normal brain, and my son’s brain which was full of fluid accumulated because the tumor was blocking the normal flow. The surgery to create a new pathway within my son’s brain would be done rather than inserting a shunt. The remaining few days was a blur. Seeing my son with a tube stuck in his brain from outside his head and connected to various machines was a mother’s worst nightmare. No ability to sleep as I lingered on every machine’s beeping, or slowing of beeps…or stopping. Those were the worst, when teams of surgeons and nurses came rushing in to check that everything was okay. Finally, the removal of the tube from his brain indicated the end of the emergency. While testing my son’s ability to walk on his own, he leaned on me as we walked down the long hallway. I cried, as the reliance of leaning on me to walk at the age of 13 brought back memories of similar happy events when he was learning to walk in his younger years. We were released, and he healed (physically) back to almost normal within a couple weeks.

What I wish I knew before diagnosis:

Later I wished I would have recognized the deep, strange feeling I now know was my sixth sense telling me something was wrong. I wish I would have known the symptoms, when combined, were premonitions of something very serious. I wish I would have taken my son’s complaints more seriously.

Guilt: These are similar feelings of every parent, which can turn into guilt. I wish I knew before diagnosis that there is no way I could have known, and that while guilt is a natural response, it is something that needs dealt with in a healthy manner as soon as possible.

Being your child’s advocate: I wish I would have known afterward that rather than waiting on the hospital staff to call me, I would need to manage this ‘project’ myself. With appointments crossing various hospitals, HIPAA laws and communication between locations is limited. I would need to document the appointments and results, keep copies, and ensure the next doctor had that information.

Take care of yourself: This can be challenging as a sole caregiver. And if you are as stubborn as I am, you will think that you can do it all without help. You must lose this mentality and let others help.

Notice a majority of ‘what I wish I knew’ is all about me? My son and his diagnosis are in God’s hands. I cannot control it, although advocating, being aware, and demanding great care is a part of my role. This is exactly why you need to take care of you – mentally and physically. Without strength in those areas, you cannot be a healthy caregiver. So if you are a caregiver, reach out to others so you can have time to strengthen yourself.

What can you do to support:

If you know a caregiver and they are as stubborn as I am – don’t ask if they need help, because they do. Bring them dinner; tell them you are stopping by for a couple hours so they can get out of the house, help them sort through the piles of medical bills and make the calls needed to coordinate payments. If you ask, they will likely decline, so make a plan and just do it.

As much as you are able, support brain tumor awareness and research by donating to one of the many great foundations. My personal loyalty lies with the Dragon Master Foundation and the National Brain Tumor Society because they are doing great things. There are many others as well. Research is extremely underfunded for brain tumors so every little bit helps. Look for events in your community that support brain tumor research.

September

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Four years ago today, life changed. Fitting, I guess that it all started in September, which is Childhood Cancer Awareness Month.

I can’t say I was completely unaware of childhood cancer when David was diagnosed, but I guess I thought it was treatable. After all, those St. Jude commercials always showed kids recovering, right? I thought that you just needed to fight hard or travel to the right hospital and it would all be fine.

The reality is that there are a lot of kids that not even St. Jude can save. So we fight. We fight with the doctors and researchers and against a disease that steals our youth. Through Dragon Master Foundation, we look back on the 4th year anniversary of David’s diagnosis and see some real progress
toward our goal. But we are far from done.

We are excited to see profile pics going gold this month, and we are so encouraged by the people who have joined us in helping to raise awareness. We are On Fire For A Cure!

It’s Kind of a Big Deal

Dragon Master Foundation
Wish I knew who to credit for this pic because it is awesome.

Wish I knew who to credit for this pic because it is awesome.

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like  being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

Memories

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I just finished reading this book on being positive, and it said that you should make sure you take time to “make” memories. Capture them. Record them for you and others to look back on.

I do that in my head, but I’m not so good about doing it in the real world. Facebook helps. At least now, my parents can’t say they don’t know what the kids look like! But it’s not enough to post some pictures this week. There’s a lot going on in my head, and I wanted to share some of it with you.

First of all, I just passed the 10th anniversary of a dear cousin’s death. Treavor was shot and killed in a drive-by shooting in Alabama. A pretty rare thing, but I’m learning that stuff is only “rare” if it doesn’t happen to you. Once it happens to you, its 100% in your world.

Anyway, that anniversary left me feeling blessed and melancholy all at once. It was followed closely by the anniversary of 9/11. Again, I felt blessed, but this time there was an underlying anger. Random stuff happens. Sometimes its bad stuff. But the interviews I saw with the FAA left me pretty furious all over again.

I can’t change those things. They’ve already happened. What I can try to change, though, is the number of people dying from cancer.  Ambitious, I know. Especially since I am not a researcher. But I think a big part of this is looking at things differently and not giving up. There are researchers making real progress with cancer vaccines. The New York Times posted an article today about a vaccine that has saved the lives of patients who were basically given up for dead.

The vaccine that David is getting is being worked on by the researchers at the Children’s Hospital of Pittsburgh part of the University of Pittsburgh Medical Center, which notably, is the place where Dr. Jonas Salk and his colleagues discovered the polio vaccine. When they discovered this vaccine, polio was crippling somewhere around 21,000 people a year. It was a miracle. I believe that we are poised to see the same kind of discovery for cancer.

The time is NOW. I just heard about another teenager in our community that lost the battle this past weekend. These kids deserve a chance to grow up. Please find a way to help. If you can make a donation, great. If you can volunteer, awesome. Even if all you can do is make a post on Facebook in recognition of Children’s Cancer Awareness month (September), please do that. We can beat this thing if we all work together.

My parting thought for tonight is “Don’t get mad, get even.” Cancer makes me mad, but I plan on getting even.