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!

Brain Cancer Awareness Month Needs You!

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DavidWearGray

Brain Cancer Awareness Month is, at best, bittersweet. A time for us to bring awareness to a disease that takes a devastating toll on families. It is a time for us to celebrate the victories of those who are living with this disease and at time for us to remember those who were taken by it.

I will be posting a lot this month about the brain cancer warriors who have crossed my path, and I will try to bring awareness to the disease and to events happening around the country. Everyone can wear grey and talk about brain cancer awareness month, but hopefully, by posting this list, you may also be able to find an event near you to attend. Please also consider changing your social media images to a grey awareness picture. If you Tweet, I’d love to connect with you on Twitter. Tweet me at @AmandaHaddock and you can use hashtags #btam (for brain tumor awareness month) and #BrainTumorThursday – a day each week throughout the year that we raise awareness.

If you know of an event that isn’t on the list, please message me so I can add it. I’m pretty sure I’ll be adding events all month, so please bookmark this list and check back!

Anywhere
May 8 – Go Grey for a Day – Make sure you wear grey on this day and tell people that you are doing it for brain tumor/cancer awareness

May 15 – Webinar to learn about the latest in collaborative brain cancer research – http://bit.ly/1dLwolc

Tune in to Catch The Brain Wave each Friday from 6-7pm EST on WESS 90.3 FM LIVE in Pennsylvania!! Listen on the web here: http://tunein.com/radio/WESS-903-s28605/

Look for ways you can contribute to your favorite organizations every day. There are too many organizations to list all the possibilities, but here are some ways you could help Dragon Master Foundation:
– Following us on FacebookTwitter, or Pinterest
– Choosing us when you shop on AmazonSmile
– Recycling for us with our free shipping program
– Register your Dillons card using our #11547 – a lot of grocery stores have this option. If you don’t see your favorite foundation listed, tell them, so they can get signed up!
– Do your intent shopping with iGive

Also, check your favorite foundation’s website for other promotions that may be happening. For example, Dragon Master Foundation has the opportunity to win a unique piece of dragon art created just for the foundation! Check it out here.

Ok, now for a state by state listing of activities you can participate in:

California
May 2 – Bay Area Brain Tumor Walk – http://events.braintumor.org/bay-area-brain-tumor-walk/
May 3 – Los Angeles Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1980&pg=entry#.VUMDZ2TBzGc
May 8 – Striking out Pediatric Brain Cancer with the Los Angeles Angels – http://www.eventbrite.com/e/striking-out-pediatric-brain-cancer-with-the-angels-maxlove-project-and-the-mckenna-claire-tickets-16325952363
May 16 – Come Fly With Me Party with a Purpose – http://mckennaclairefoundation.org/events/come-fly-with-me-5th-annual-party-with-a-purpose-051615/
May 30 – San Diego Brain Tumor Walk – http://events.braintumor.org/san-diego-brain-tumor-walk/

Connecticut
Sharing Hope Walk the Walk Talk the Talk – http://hope.abta.org/site/TR?fr_id=3330&pg=entry

Florida
May 2 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-fl/
May 9 – Prohibition Gala – http://btagala.com/

Georgia
May 5 – 11 Annual JSL Charity Classic – http://www.jslcharityclassic.com/
May 31 – Bowl for the Bull – http://www.gofundme.com/bowlforthebull

Illinois
May 9 – 17th Annual Vernon Hills Brain Tumor Walk – http://www.abta.org/get-involved/events/17th-annual-vernon-hills.html

May 13 – Dine out at Kouri’s in Pekin – https://www.facebook.com/events/840909205993896/
May 15 – 3rd Annual Act for Alan Fundraiser – http://www.abta.org/get-involved/events/3rd-annual-act-for-alan.html
May 17 – Join the Voices 5K in Chicago – http://www.voicesinmotion.org/site/TR?fr_id=1291&pg=entry

May 30 – Cocktails for a Cause – https://myab.co/events/EC/

Iowa
May 1-3 – Lambda Chi Alpha Teeter Totter – https://www.indiegogo.com/projects/lambda-chi-alpha-teeter-totter-a-thon-for-abta
May 9 – Race for Hope Des Moines – http://www.raceforhopedsm.org/

Kansas
May 3 – Avengers Age of Ultron Movie Screening – http://www.dragonmasterfoundation.org/events/

Massachusetts
May 2 – Brain Tumor Alliance 5k – http://events.braintumoralliance.org/site/TR?fr_id=1160&pg=entry
May 17 – Boston Brain Tumor Ride – http://events.braintumor.org/boston-brain-tumor-ride/

Michigan
May 2 – BT5K – http://hope.abta.org/site/TR?fr_id=3183&pg=entry

Minnesota
May 17 – MN Brain Tumor 5k – http://mnbraintumor5k.com/

Mississippi
May 2 – North Mississippi Kilt Walk & Fun Run – http://www.kiltedforbraintumors.com/

Nevada
May 16 – Desert Gray Matters – http://wizathon.com/walktoendbraintumors-nv/

New Jersey
May 30 – National Walk to End Brain Tumors – http://www.wizathon.com/walktoendbraintumors-nj

New York
May 17 – 11th Annual Team Billy Ride & Walk for Research – http://www.braintumorcommunity.org/site/PageServer?pagename=BTR_SS_Homepage

North Carolina
May 3 – NC Triangle Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1990&pg=entry#.VUMC6mTBzGc

North Dakota
May 24 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-nd/

Ohio

May 18 & 19 – Joggin for the Noggin Benefit Dinner – https://www.facebook.com/events/350866698444089/

Pennsylvania

May 1 – Brews for Brains – https://www.facebook.com/events/1377664142561766/

May 2 – Avengers Age of Ultron Movie Screening – https://www.eventbrite.com/e/the-avengers-age-of-ultron-2015-3d-private-movie-screening-at-king-of-prussia-imax-and-stadium-16-tickets-15957153275

May 24 – BRAINFEST – https://secure2.convio.net/abta/site/Donation2;jsessionid=0C748EA3B0B8BED03111BA4D4F56B5A0.app274b?df_id=6720&6720.donation=landing

Utah
May 25 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-utah/

Virginia
May 29 – 3rd Annual Lambda Chi Alumni Clay’s Day – http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=515

Washington DC
May 3 – Race for Hope Washington, DC – http://www.braintumorcommunity.org/site/TR?fr_id=2360&pg=entry

Washington
May 3 – Seattle Brain Cancer Walk – http://www.braincancerwalk.org/
May 16 – BT5K – http://hope.abta.org/site/TR?fr_id=3182&pg=entry

May 30 – Bellingham Brain Cancer Walk – http://braincancerwalk.org/bellingham

It is my hope that these events will inspire you to get involved in awareness events throughout the year – not just in May.

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.

I Had A Dream…

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Last night I had a dream about an adorable little boy. It was not a child I knew, but I fell instantly in love with him. His mother was unable to care for him, and ultimately he came to live with Richard and I.

He was precious, and we were happy to have him with us. And then suddenly, he couldn’t walk. They told us he had DIPG. And I knew that this little boy we loved would be taken from us far too soon.

They say your dreams are your subconscious trying to work out a problem in real life. To me, this dream meant that even though we really did lose a child to brain cancer, we still feel the emotions of each new diagnosis. Those children are our children. We still fight with that kind of passion, but the key is helping people understand they need to join the fight BEFORE it really is their child.

You’ve seen those commercials, the sick child in the hospital over the holidays. You are thankful for your healthy kids and so you donate. I used to do that, too. And we would contribute to Make-A-Wish and other charities that helped those kids and families. They are good at what they do. But doing what we have been doing for years is not getting us the cures we need.

We want to take the research community and give it a turbo boost. Parents, think about the days when you were in high school. To complete a paper for school, you had to go to a library, look things up on little paper cards, go find a book (that you prayed would be shelved properly), and dig through that book hoping to find the info you needed.

Today’s kids do a quick search on the internet for exactly what they are looking for, and they have their source in moments.

Cancer researchers are stuck in the “library”. They only have access to the info at their local branch, and sometimes the filing system isn’t great. If they have a new idea, the information they want might not be there at all.

We want to change that. We want to build an internet “library” for researchers that will have every piece of information they are looking for. It will be categorized properly, quickly accessible, and updated daily.

We’ve got the foundation. It is housed at the Children’s Hospital of Philadelphia and it currently has genomic and clinical data for pediatric brain cancer patients and their families. Records are being collected from four hospitals right now, but we want more! We truly want this to be a collaborative tool that will help a multitude of researchers at multiple hospitals.

But a resource like this costs a lot of money, and traditional funding sources are inadequate. That’s why we need you. There is nothing that Americans can’t do once they set their mind to it. The ice bucket challenge proves that millions can be raised very quickly, given the proper incentive.

We love our individual donors, and they are a loyal bunch. However, we need to multiply our donors if we are going to truly make a difference. That’s why the #whippingchildhoodcancer challenge is so cool. It isn’t a huge monetary commitment, but it allows you a forum to talk about why you are giving. It can inspire others to do the same. And before you know it, hundreds, or even thousands, of people know about the database and why it is important.

So if you haven’t done it yet, please consider taking a pie to the face for childhood cancer awareness. And make sure you let me know if you do it for Dragon Master Foundation so we can post the video!

P.S.
I know that not all of you are on social media (ahem, Danny!) so here’s a brief recap of the #whippingchildhoodcancer challenge:

Our aim is to raise awareness around the 46 children diagnosed and 7 lost every day to pediatric cancer in the U.S. You have 46 hours to complete the following challenge. You must record a video of yourself taking a pie to the face (can be a paper plate with either whipped cream or shaving cream). Once completing the challenge you must choose a pediatric cancer charity to donate $7 to and tag/challenge 7 friends (46 if you’re feeling bold!) to make their own pie in the face video. If you’re unable to complete the challenge within 46 hours, you must donate $46 and tag/challenge 7 friends.
Be sure to explain the 46/7 statistic in your video. 46 kids diagnosed every day, and 7 die from pediatric cancer.

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!

People You Need to Meet #38: Clint Murphy

52 People To Meet Posts

What I wish I knew before my mom got brain cancer… the value and limits of time.

Last picture with mom

For me, Friday, September 12 was like any other day in the life of a presidential campaign staffer. Working from dawn to dusk, doing everything and anything to push the ball just a touch forward in the task of getting John McCain elected as the next President of the United States. I lived and worked in Tallahassee, FL and was the Deputy Southeast Regional Campaign Manager for McCain for President.

That night, a few campaign staffers and I headed up to Marietta, GA for a GOP Unity Rally on behalf of Senator Saxby Chambliss and the Georgia Republican Party. Nearly a thousand Republican volunteers from throughout the state would be congregating, and it was a perfect time to sign up volunteers, recruit people for coalitions, and generally show the flag on behalf of Senator McCain. I had arranged for the Senator to call in to the rally and express his thanks for their support.

The night before I had talked with my mom, and I got the impression she wasn’t feeling well. During the day on Saturday, I talked with her and again got the distinct impression that something just wasn’t right. She insisted that I call her when I got back to Tallahassee that evening and that I shouldn’t worry.

The event was a success, and we were all excited about having gotten so many people signed up and engaged in the campaign. In the months before, the Obama campaign had placed staff in Georgia and tried hard to make Georgia competitive. With nothing but volunteers and me and my teams’ efforts from Tallahassee, we organized the state, built coalitions, and flexed our muscle via earned media events and scared the Obama staffers out of Georgia and into North Carolina.

I dropped everyone off at their respective homes and was entering the code to get into my apartment complex while I was on the phone with my mom. The sun was setting on what had, for me, largely been a great day. Up until that point, Saturday, September 13 had been a very successful day, and I was excited about the future. For my mom, it would be an entirely different story.

As I spoke to her, mom seemed so calm as she described to me the events of the night before and then, with what seemed to come out of nowhere, she said, “They found a mass in my head.” I believe my initial response was pure disbelief, and when she confirmed for me what she had just said, I immediately started to have a panic attack. I had to hang up the phone because I just needed to scream as loud as I could, something that I had honestly never done and have never done since.

I called back and spoke with my cousin who walked me through the events of the following day, which lead to this grim discovery. On Friday, my mom had noticed that her tongue felt thick. She called her various doctors and sadly, none of them returned her calls. She called my aunt and they decided to go to the emergency room.

Initially, my mom was told that it was likely an allergic reaction to something and she was given a prescription for an EpiPen. While getting the prescription filled at the store, mom had a full seizure and back to the emergency room she and my aunt went. It is then that they performed the CT scan and found the mass.

I wanted to drive back to Savannah right away, but between crying and already being tired, I couldn’t see clearly to do that. I went back to my apartment and began to research everything and anything as it related to brain tumors. Everything I read made me even more upset. Eventually, I went to sleep as I was crying so much I could barely see the computer screen, let alone make sense of anything I was trying to read.

The mass was large, and it had tentacles forming something like a dumbbell in my mom’s brain. The CT and MRI had suggested a Glioblastoma Multiforme Brain Tumor (GBM). A GBM is one of those diagnosis that, by and large, has had very limited hope for a long time. Innovations in treating, let alone curing, GBM have not been forthcoming. Having been so involved in politics, I knew that Senator Ted Kennedy had been recently diagnosed with the same tumor and had successful surgery to remove the tumor. I went to work researching where he went to have that done.

My mother seemed so calm as we sat in the hospital room the night before her biopsy. She wasn’t crying and showed no sign of even being nervous about what might lie in front of us. I on the other hand was a mess. I tried to keep a brave face, but I couldn’t. I was scared, sad, angry, and just about every other emotion you can imagine.

We scrambled to get all the necessary forms completed in advance of the biopsy because I was informed that if the tumor were operable; they’d likely go ahead and remove it at the same time. Worried about what condition my mom would be in afterwards, I didn’t want to leave anything to chance.

It was random chance that my aunt and I were walking down the hall when the surgeon came out of the operating room. He informed us that the tumor was inoperable and that it very much looked like a GBM, but would need the path report to confirm that diagnosis. Based on what he saw, he said he thought my mom had less than 3 months to live. We were dumbstruck and heartbroken. Even writing this now, I can feel that helpless feeling that I felt that day in the hospital. With everything in my being, I felt that those words just couldn’t be true.

In researching Senator Kennedy’s experience with a GBM, I saw that he went to Duke. He had surgery, was getting treatment, and doing relatively well, all things considered. I called Duke, got all the information to get a second opinion, and camped out in front of the path lab waiting on the slides so I could send the package to away in hopes my mom would be accepted as a patient.

There was no way that I could or would accept that my mom had less than 3 months to live, thus I went on a one man campaign to ensure that she got into to see the same surgeon that worked on Senator Kennedy’s tumor. My goal was to give my mom the best chance that there was to ensure she would survive this diagnosis and disease.

My mom’s 3-month diagnosis turned into an incredible 18-month experience. Through all the ups and downs over those 18 months, you might be surprised to know that, aside from the initial conversation about her possible death just before the biopsy, my mom and I only talked about her death one more time.

In February of 2010, mom and I made our final trip to Duke. It was on this trip that we had the final conversation about her possible death and she laid out for me her thoughts, as best she could, on the experience that she had gone through in fighting this tumor.

The doctors informed us that the tumor had started to grow again and that we were running out of options and were likely at the end of the line. Most people at this point would assume that we would have had Hospice assistance, but we didn’t. Even after returning home, we still did not have Hospice.

On the return home, mom shared with me that she had few regrets in life. She would do a few things differently, but all in all, she was pleased with how her life had turned out. She wasn’t angry that she had this tumor, nor was she angry that God was cutting her life short. She felt that it had all happened for a reason and that she was confident that God would use this experience she was going through for something better. She had a few people that she wanted to talk with before her journey was over and, if possible, wanted to make a trip to Hawaii. Her strength and bravery was just amazing. I was in awe.

On the other hand, I was a mess. I spent every moment of my time not spent working or taking care of mom, researching other treatment options, calling medical centers, and sending medical records to get another opinion. Sometimes those calls were so hard that I had to call back because I couldn’t control my crying. I was not prepared at all to lose my mom. I was not ready.

On February 28, my mom fell down and hit her head. She seemed fine and the doctor from Duke spoke with us and suggested that unless she seemed to be in pain that we wait and take her to her primary doctor in the morning. Mom seemed fine the rest of the day and evening, however the next morning she began to go downhill.

That Monday, I still thought we had more time! I spent the morning with her and then ran errands in the afternoon to go ahead and purchase the cemetery plot, send off yet for another 2nd opinion, and then have a conversation with my mom’s nurse at Duke about a possible hospital to hospital transfer. The nurse from Duke was the one who actually told me that we were at the end, and that there weren’t other options or opinions and that what my mom needed now more than ever was to be given permission to die. To acknowledge how hard she fought, but to let her know that it was okay for her to let go.

I returned to the hospital, and together with my family and a couple of my mom’s best friends, we sat there with her. By this time she was in a coma. I asked everyone not to cry or be sad while we were with her. We talked about my mom’s favorite flowers and a tear shed from her eye. The nurse at the hospital told me that this could last just tonight or could go on for some time, but almost as quick as she said that it seemed to come to an end. I told my mom how much I loved her, and how proud I was of her fight. I assured her that she would be going from my arms to the waiting arms of her mother and father, and that all would be okay.

Without notice, mom woke up and looked right at me. She turned her head to look at her sisters and friends and then took her last breath. Her death was both peaceful and beautiful.

When it was over, then I cried. I cried out how much I wish I had done more. I cried at how sorry I was that I hadn’t done more. I cried because while she was at peace with what she had been through, I was not, nor was I even ready. I felt like I needed more time.

—-
Mom Hug

Since my mom’s death, I have gotten involved with the National Brain Tumor Society as the Lead Advocate for Georgia. Additionally, I am a brain tumor caregiver mentor with Immerman Angels. I want to use the experience I went through and the lessons learned to help others going through a similar situation and try my best for the experience my mom went through to be used to help benefit others.

It should be noted that when I read Senator Kennedy’s book, True Compass, he referenced his own desire to share his experience with GBM so that he could offer hope to those who faced a similar diagnosis. Knowing Senator Kennedy’s experience showed me the path to hope for my mom, and for that I am grateful.

52 People You Need to Meet: #37 Sue Jarvis

52 People To Meet Posts

Sue & Megan Jarvis

Our daughter, Megan, had suffered from headaches for years which doctors said were migraines. However, on December 1, 2004, an MRI revealed our worst nightmare. We got the news no parent wants to hear – “your daughter has a brain tumor.” Our lives would be changed forever that day.

A biopsy revealed a grade two Oligoastrocytoma.   After three surgeries and years of chemo, fast-forward to August 2009, her tumor had now progressed to a grade four Glioblastoma.   This time treatment would be radiation and more chemo. Fast-forward to February 2012, more words no parent wants to hear – “Megan’s tumor is growing, and we have run out of options. “ Basically, nothing more we can do for your daughter, and then I asked the dreaded question – how much time does she have, and the dreaded answer – six months. So we took that special trip, had fun with family and friends, ate good food and we didn’t focus on what was going to happen tomorrow.

On August 10, 2012, Megan passed away from this terrible disease. It was a long journey of so many ups and downs that Megan handled with such grace and dignity – never complaining. She had a beautiful spirit that shined through in how to live day-by-day with the challenges of a terminal illness.

Six months after Megan’s death, I found the following paper she wrote for an English class at Old Dominion University. The paper was a hidden gift to us, as Megan was very private about her illness. It gives such an insight as to what life is like with a brain tumor. Megan just wanted to live a normal life like any young adult.

“English 101
Megan Jarvis
March 6, 2008

I believe that life is something that should never be taken for granted. In my first year at college I have met many people who do this every single day, not thinking anything will happen to them; that they are untouchable. I, like any young healthy person, thought that I would be fine forever, but realized that disease does not discriminate. It can affect anyone at any time, no matter how perfect they think their life is.

When I was sixteen years old I found out I had a brain tumor. I had three major surgeries, each setting me back physically and mentally. I had to deal with pain, speech therapy, seizures, chemotherapy and radiation. It has been hard, but it has helped me understand how precious every little thing in one’s life is. Since the surgeries it has been hard for me to remember my friend’s name, drink a cup of coffee, drive a car, swim, or play my piano. It is even more difficult to take a piece of paper and write my thoughts into words. Another thing that is different is all of the medication I am on. Before this I never took any medicine, and now I can’t go a day without it. It is a lot to remember and also come many side effects. The worst is when I become toxic, which has happened many times. This hurts me the most by having to miss important things, like school. I had to be home-schooled part of my senior year. I have lost almost all of my short-term memory and have trouble finding words. This can be very frustrating.

With things being the way they are, it is distressing for me to see people act in ways that are so perilous and think nothing of it. They won’t wear their seatbelt in their car; they don’t need it. They start smoking cigarettes; it makes them look cool. Lying out in the sun all day is smart and makes them look better. And after all of these things, they believe they are so healthy that they have no need for medical insurance. Then they start with their complaints – I’m not getting paid enough, I don’t like my car, I’m not tall enough, my clothes aren’t pretty enough. I want to tell them to stop wasting their time complaining about these petty things that don’t mean anything. Start appreciating things that do matter. Volunteering in a hospital I have met many elderly people with terminal diseases. When talking to them, almost all say that their sickness is due to decisions they made when they were young.

I met a person at school and when I told him about my situation, he was surprised at the way I was living my life. He said with something like this I needed to carpe diem, or “seize the day”. That was the motto by which he lived. And I did agree with him. Eat, drink, and be merry is something everyone should do; live a happy life. But don’t lose concern for the future. I told him my saying is memento mori, “remember that you are mortal”. Life is something that’s value should not be underestimated.

I know what I have experienced is more than significant. It has completely changed my life. Everything now is opposite of what I had planned it to be. It did have some good with it though. I was able to meet so many great people, people who have gone through much more than me. It showed me that I have more friends than I ever thought I did. It showed me how kind people are, but unfortunately how unkind others can be.

I am strong inside, not fearful of my future. I don’t look ahead, just the present. I don’t even know what I am doing tomorrow. I was never scared of what was going to happen to me, and I was the one holding up my family through the ordeal. I don’t know what I want for the immediate future. I think my goal is to just get through another day and see what happens from there.

My life is nowhere close to where it was before any of this happened, but I wouldn’t change anything.”

Megan had wisdom beyond her years like so many children and young adults who have to deal with cancer. Their lives remind us that it’s not the number of years we are given, but how we use them.

The question of what I wish I knew before Megan was diagnosed. I wish this were all a bad dream! I wish I wasn’t in the grieving parent club that I didn’t ask to join. Someone I knew who had also passed away from a brain tumor last words still stay etched in my mind.   Confront reality, confront the end.

I thought I knew what life would be like after Megan was gone. I thought I would be prepared. But no one can be prepared for death, let alone the death of their own child. I knew how this story would end.  After all, you don’t read of too many people living a long, full-life with a GBM. Sometimes statistics don’t lie. But that’s not to say we ever gave up hope. I grieved for many years being her mother and primary caregiver and watching her go through so much pain and suffering. That grief journey is over and now I’m on a new journey. Learning to live with the loneliness and emptiness. Learning to live with the reality that my hopes, dreams and future for Megan – gone. All the thoughts of what could have been, should have been, would have been – gone. From the time Megan was little, she always wanted to be a doctor – ironically, a Neurosurgeon.

So for my future – I will strive to live my life with Megan’s positive attitude, courage, perseverance, compassion, faith and living for today like there may be no tomorrow on this earth. I do believe there is hope that each day can get better – it’s a minute-by-minute process that may take me a lifetime to achieve.

Megan, may the wind be always at your back, and may the sun shine warm upon your face. And until we meet again, may God hold you in the palm of his hand.

Love Mom

10 Answers from Today’s Living With Brain Tumors Event

Lessons Learned

I just participated in a great Twitter Chat that was moderated by Dana-Farber and the National Brain Tumor Society. For those of you who don’t do Twitter, I thought I would re-cap the conversation here. The info is all archived on Twitter under the hashtag #DFCIchat. Dr. Reardon was there representing @DanaFarber, and several staff members from @NBTStweets were also online. All the answers noted below are from Dana Farber, unless otherwise noted.

Q1: What are the most common kinds of brain tumors?
A1: Glioblastomas are the most common adult primary cancer of the brain; about 13,000 cases are diagnosed every year in the US.
A1: Other kinds of brain tumors include oligodendrogliomas, astrocytomas, and meningiomas.
A1: Metastatic cancer to the brain or central nervous cancers is 4-5 times more common than primary cancers.

Q2: What are some of symptoms of brain tumors?
A2: Symptoms can include difficulties with balance, strength, coordination, vision & ability to speak. Seizures are also common.
A2: Headaches that are new/worsening. Often worse when lying down & in the morning – they may include nausea or vomiting.

Q3: What are strategies for coping with cognitive brain tumor problems?
A3: Neurocognitive testing is critical and allows identification of areas of strength and weakness.
A3: Potential interventions include medications such as stimulants (ritalin and nuvigil) and memory boosters (aricept)
A3: There are also many great apps to help, such as Lumosity, or formal cognitive rehab therapy
@CBlotner: Other interventions include support groups or programs such as @campdream where survivors can meet peers like them.

Q4: What kind of support is important when someone is living with a brain tumor?
A4: Brain cancer can have such a wide array of impacts on patients and families: physical, cognitive, and emotional.
A4: Patients often have physical difficulties and may need help with strength, balance, and coordination.
A4: Patients may experience changes in personality and behavior, so support and education is also important for caregivers.
@askdebra: There is an incredible #braintumor socmedia community hashtag: #btsm. 1st Sun of month 10-11pm ET is #btsm twitter chat

Q5: What role does nutrition play in managing brain tumors?
A5: Good nutrition is critical for the immune system and overall health.
A5: A healthy, balanced diet can help patients get through treatment with fewer side effects.
A5: A trained nutritionist should be a key member of your care team as a brain tumor patient.

Q6: What role does social media play for the brain tumor community?
A6: Social media can bring together clinicians, patients, and advocates who are passionate about curing brain tumors.
A6: A brain tumor diagnosis is difficult to cope with. Connecting w/ other patients through social media can be invaluable.
A6: Great info is available online, but some is misleading or wrong. Be cautious and discuss any questions with your care team.
@amandahaddock: In a community defined as “small”, social media connects those effected and helps them feel less isolated.
@BrainTumourOrg: We have a Facebook group for anyone affected. People use it to share their stories, news, tips. It’s a real community.
@Cangela25: @Livestrong does free programs for Cancer Survivors at YMCAs
@amandahaddock: Facebook groups to check out: Glioblastoma Cancer/Brain Trauma Caregivers; Brain Tumor Talk, Brain Cancer Family

Q7: What role does exercise play in managing brain tumors?
A7: There is some evidence that exercise may improve symptoms and possibly impact progression and survival.
A7: Exercise can combat fatigue, improve bone health, and reduce anxiety.
A7: Exercise keeps the immune system strong and can reduce risk of complications.

Q8: How do clinical trials contribute to brain tumor advances?
A8: Clinical trials are essential to improve brain tumor treatment and include a wide variety of therapeutic approaches.
A8: At Dana-Farber we test patients’ tumor samples to recommend specific clinical trials that offer the most promise and hope.
A8: Clinical trials are essential to improve brain tumor treatment and include a wide variety of therapeutic approaches.
A8: We are developing a variety of strategies to stimulate the immune system to recognize & attack tumors.
@NBTStweets: You can search for brain tumor Clinical Trials at clinicaltrials.gov
@TheLizArmy: I would love to see a SURVIVORSHIP PLAN for brain tumor patients/survivors. These are developed for other cancers.

Q9: How can caregivers of patients with brain tumors find support?
A9: A brain tumor diagnosis can cause huge emotional & financial disruptions for families. Support for caregivers is critical.
A9: Finding support groups (online or in person) can be key to coping for caregivers.
@AmandaHaddock: There are people all over social media to connect with. Active users on Facebook, Twitter, Instagram, and Pinterest
@TheLizArmy: Caregiver.com (@todayscaregiver) has a ton of amazing resources and articles; Caregiver.com also features articles w/”famous” caregivers which is pretty inspiring

Q10: What resources would you like to share?
A10: On September 20th we’ll be hosting an annual Living with Brain Tumors event at Dana-Farber: bit.ly/N2A9o6
A10: At Dana-Farber we offer a number of clinical trials for brain tumor patients: bit.ly/UzudHo
@AmandaHaddock: facebook.com/OperationABC will post about any event nationwide that is raising awareness or funds for brain cancer research
@AmandaHaddock: @dragonmasterfdn keeps a list of any organization that has direct patient/caregiver benefits. dragonmasterfoundation.org/resources/
@BrainTumourOrg: For everyone from the UK – support groups regularly all over the country #DFCIchat: bit.ly/1rTEbBY
@NBTStweets: Download Frankly Speaking About Cancer: Brain Tumors for information on living with brain tumors #DFCIchat
@TheLizArmy: The #BTSM community hosts tweet chat every 1st Sunday for anyone impacted by brain tumors pic.twitter.com/P7f2SJ5AOV
@AmandaHaddock: NBTS has an advocacy day every May in DC. Awesome opportunity to meet survivors and let your voice be heard at the Capitol.

I didn’t try to re-create the whole conversation for you, but you can get a pretty good idea of how it went. Overall, it seemed very successful. I hope that there are a lot of people that can benefit from this information.

Living with Brain Tumors

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brain-tumors-twitter-chat

As a lot of you know, I volunteer actively in the brain tumor community.  I serve as the Kansas Lead Advocate for the National Brain Tumor Society, and I am President of the Dragon Master Foundation. Both are very rewarding roles, and through them, I meet interesting people in the war on cancer. Through one of those connections, I’ve been asked to participate in a Twitter chat this week.

I’m very excited about this chat for a few reasons:

1) It is so hard for the newly-diagnosed to know where to turn for information. This chat will be an excellent resource for them. Topics to be covered will include symptoms, treatment, exercise, nutrition, and research breakthroughs.

2) We will have some direct interaction with David Reardon, MD, Dana-Farber’s clinical director of the Center for Neuro-Oncology. He is very well-respected in the field, and I am honored to be chosen to participate in something he is involved with.

3) Hosting the chat on Twitter means that people all over the world will have access to the information. It is an exciting time to be involved in advocacy and education movements, and I think cooperative efforts like this will be a big benefit to patients, caregivers, and medical professionals.

If you aren’t on Twitter yet, now is the time to join! If you have questions you’d like to ask during the chat, simply tweet them to @DanaFarber. Follow the conversation on Twitter through the hashtag #DFCIchat.

Shocking Donation From A Teen Should Have Everyone’s Attention

52 People To Meet Posts

20140719-090435-32675065.jpg

This young man did something shocking on January 15, 2010. This story caught my eye because it was about a kid with brain cancer. A kid who liked soccer and cooking. A kid who died on my son’s birthday in 2010 – the year my son would be diagnosed with the exact same kind of tumor. But none of those are the reason that I’m sharing this with you.

Here’s his story if you want to read the whole article: http://m.michiganradio.org/?utm_referrer=https%3A%2F%2Fm.facebook.com#mobile/10466

The shocking thing about Laurance Carolin is that he was the FIRST “child” to donate his brain to this hospital for research. That is significant to me, and it should be to you, too. Here’s why:

1. The C.S. Mott Children’s Hospital at the University of Michigan has been around since 1905. So in more than a hundred years, no one had made the decision to let researchers study their child’s brain after death. Laurence and his parents made the heart-wrenching decision to donate his tissue to help others. It isn’t like organ donation. They knew it wasn’t going to directly save a person’s life. They had the VISION to understand that it could save thousands of lives down the road.

2. Tissue donation is rare. I’m working on this issue every day, and even I didn’t realize it was this rare. It is dependent on people being generous in one of the scariest times in their lives. I don’t know about you, but when I’m scared, I’m usually only thinking about myself and my family. Having the presence of mind to think beyond your current situation takes courage.

3. Brain tumor biopsies only yield very small samples. Because of the location, surgeons have to be particularly careful with tissue removal, and the result is frequently tiny pieces of tissue that are not useful for research. Having access to the brain post-mortem means that they can take larger pieces of tissue for study.

4. This hospital took the tissue to use for research. That might not sound significant to you, but it is. They could have said, “Sorry, we don’t have a program to do that.” I’ve heard of other hospitals saying, “Sorry we don’t have room to store it.” The C.S. Mott Children’s Hospital at the University of Michigan found a way to make Laurence’s donation matter, and it may not have been easy for them.

5. You have the power to make donations like Laurence’s more significant. The whole point to Dragon Master Foundation is to build an infrastructure that multiple hospitals can use to collect, store and analyze this type of tissue. There are still places where the tissue not needed for diagnosis is simply discarded. And yet, at the same time, there are researchers who don’t have the tissue they need to do research.

It is a significant problem that we are just now able to solve. Technology is just getting to a place where it is somewhat affordable to build the type of infrastructure that researchers need. This database will help researchers at multiple institutions. They will have far greater access to the data they need to find better treatments, and ultimately cures.

I believe with all of my heart that this database will help researchers cure cancer. I can’t do the research, but I can help raise the money for them to have this resource. If you want to help, too, please get in touch with me. Everyone can play a part!