Seven Ways To Celebrate “National Cancer Survivor’s Day”

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7 Ways To Celebrate National Cancer Survivor's Day

National Cancer Survivor’s Day is a relatively new day of recognition on my radar, but I think it is really important. It is significant to me because I sometimes need a reminder that there ARE people who are surviving cancer. You see, I do a lot of work these days with the DIPG community – a pediatric brain cancer that claims the lives of nearly every patient. For them, being a survivor means you are alive today. It is the most stark reminder that we should all appreciate each day. Every. Single. Day.

So on this day to honor survivors, I thought I’d touch on some things you can do – every day – to make a difference for those fighting the cancer battle. I really want to focus on the “mundane” things that most of us do every day, so I’m gonna go through my typical day and show you how easy it is to make a difference.

#1 Social Media – When I get up in the morning, I typically check Twitter or Facebook to see what my friends are up to. I like to share their positive messages and I frequently share a message about cancer fundraisers. (Even if you can’t afford to participate in a fundraiser, sharing it on social media is a powerful way to help.)

#2 Pretty Flowers – In the summer, I will typically let the dog out and then wander into the back yard with him for a minute or two. I like to check the progress of the flowers, and that reminds me that National Brain Tumor Society has a bulb fundraiser that lets you have a annual reminder of your gift to their cause.

#3 Recycling – Back inside, I usually grab a quick bite to eat and then shower & get dressed. As I use up containers, I drop them into a small box for recycling. The salon I frequent has signed up to help with recycling, too, so our containers add up pretty fast.

#4 Wearables – What I’m wearing each day will vary, but on “casual” days, it’s almost always some sort of awareness shirt. Dressier days see me wearing a wristband, bracelet, or necklace. On a good day, I can wear all four things!

#5 Online Purchases – Then it’s usually time for the computer. If I need to order anything online, I make sure I check the vendors that use iGive.com or AmazonSmile so I can donate a percentage back to Dragon Master Foundation. My emails have a tagline that points people back to those simple ways they can raise money for charity. I really think everyone should use AmazonSmile. It doesn’t cost the participant anything, and it can add up quickly for the charity.

#6 Social Media – Ok, I know I’m listing this again, but things go by pretty fast on Twitter, so one tweet a day won’t necessarily reach a lot of people. During the day, whenever I end up on social media, I try to add a Tweet for the cause.

#7 Food – At the end of the day, we either make something at home or go out to eat, but either way, I’m careful to pay attention to the brands that support cancer research – especially brain or childhood cancer research. Those are much harder to find that other types, but you can bet we are there when Chili’s supports childhood cancer awareness every year! And our grocery store, Dillon’s, lets us donate a portion of our grocery bill to Dragon Master Foundation each time we shop with our rewards card.

So there you have it. Seven easy things you can do nearly every day to make a difference in the battle against cancer. Maybe if we all make it a daily effort, there will be a few more survivors to celebrate next year when this day rolls around.

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.

Working Together for A Brighter Future

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This week I had the great pleasure of speaking with Dr. Peter Adamson, Group Chair of the Children’s Oncology Group (COG). For those of you unfamiliar with COG, more than 90% of  children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer. That matches our mission pretty well, so I was excited to learn where we might be able to collaborate.

COG is currently focused on collecting biospecimens and clinical data. In layman’s terms, they are collecting cancer specimens (tissue, blood, etc) as well ad information on the child’s diagnosis, treatment and outcome. They have collected a massive amount of data over the past 50 years. They have well over a million biospecimens! More than 350,000 patients have shared data with them. They have biorepositories and databases in different parts of the country and work with over 220 hospitals in the US & Canada.

I am very impressed by what they have accomplished, but ultimately, I believe that the infrastructure we are building can improve the work they are doing. Their focus is collecting the specimens and data. Our focus is taking those specimens and data and making them a perpetual resource backed by robust computational power to allow them to collaborate with other researchers and also analyze and visualize the data in new ways.

To give you some idea of the scale of the data, let’s look at the numbers. There are approximately 14,000 children a year diagnosed with cancer in the US. Collecting a biospecimen would cost somewhere in the range of $1,000. (The NIH currently values that at around $500, but the actual institutional cost is thought to be much higher, thus my $1,000 figure.) So just to collect the biospecimens for those patients, you are looking at $140,000 per year. However, that is just scratching the surface of what needs to be done. Those specimens have to be stored (visualize giant freezers with robots to access the individual samples), categorized, and matched with corresponding clinical records.

Traditionally, most hospitals and foundations have been unwilling and/or unable to invest in the infrastructure that it would take to compile this amount of data. COG demonstrated real vision by collecting this data and they have been able to use it to forward science. Dragon Master Foundation believes that additional computational power, or “big data” analytics, will help them find the cures they seek even faster.

Dr. Adamson said he felt Dragon Master Foundation is taking “a sophisticated look at the challenge.” We know that building this type of computational infrastructure will be expensive, but we also know that it will exponentially decrease the amount of time it takes for researchers to collect and query data. Faster answers to their questions means faster cures for us.

There is no doubt in my mind that we are building a resource that will improve cancer research. It ultimately will help cancer researchers throughout the US, and probably throughout the world. It will make the work they have been doing for years more relevant.

To learn more about Dragon Master Foundation, please visit http://www.dragonmasterfoundation.org. To learn more about the Children’s Oncology Group, please visit projecteverychild.org or childrensoncologygroup.org .

People You Need to Meet #44: Stephanie McMillan

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Stephanie's family

Stephanie’s family

What I wish I knew before my child was diagnosed with brain cancer??

I wish I had known how precious time was. I wish I had realized how little that mess had mattered, how quickly time passes by, how precious every sound from his lips could be.

Though his whole life we were on the go, enjoying life, but it wasn’t until my son was told that he mostly likely wouldn’t survive this that we really began to live. October 4, 2012 will forever be etched in my mind as a day that the world stopped turning at the same rate of speed.   From that day, life became before and after.

Before Richard was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) we spent our weekends going to the park, visiting the local lake, swimming from sun up to sun down. I wish I had known how precious that time with him really was. I wish I had soaked up every minute. The thing is, as parents, we tend to busy ourselves. Even when taking our kids to a park, we use that time to socialize with other parents, or to send those all so important work emails. Looking up every so often to make sure we can spot our child, then right back to what we were up to. How many times did I take my kids to the park only to sit on a bench the entire time?   How many of our trips to the pool or lake did I lay on the side line the entire time working on my tan rather than splashing around with them? Yea, I got up and played with them, when I got too hot to continue lying there, and needed a break from tanning my skin. There were many times that I did this with friends and spent more time laughing and cutting up with them, rather than playing with my kids. If I had known then that my son would die at 9 years old, I have to believe that I wouldn’t have cared one bit about my tan lines, or sending that work email. I have to believe that I would have gotten off my butt and played with my kids. I would have spent every single second soaking them in. I would have let the dishes lay in the sink and played with them before bedtime.

So often in our busy lives we wake up determined to keep ourselves on schedule. We get upset with our children when they take too long to put on their shoes. ‘UGH….get up, I’ve called your name three times… if I have to call your name one more time you’re going to be in trouble.’ I have to believe that had I known that our lives would change completely when my son was 7 years old, I would have spent every morning waking them up slowly with snuggles. Giggling while we played games to get dressed. I have to believe that I would have gotten up earlier to make sure we had time for things to go wrong, or us to fall behind schedule. To enjoy that morning rush with my kids rather than just march them into the day with one …two…. three, let’s go.

As adults we become so consumed with our careers. I wanted to travel every chance I was given with the company I worked for. I was working hard to hopefully become a District Manager some day. Had I known when I was busting my hiney to climb the corporate ladder that my life would change, I would have left work at work. How much money I earned wouldn’t even matter anymore! So often I brought it home with me. After working 12 hours, I’d come home and take calls or send emails, pushing my kids to the side so that they could entertain themselves. I have to believe that if had I know that my son wouldn’t ever turn 10 years old that I would have worked fewer hours, and I would have let work handle itself when I was home with my family.

I ask myself often, why did that matter so much to me? Did they miss me when I left? You see for me, it wasn’t my business I was working to grow. I was working in a corporate job that I loved, but while I want to believe I was a valued employee, I was just a number and quickly replaced. Life moves on, and they needed the job done. Meanwhile, what was waiting on me at home was a position that was irreplaceable. I was the CEO of the most important job in the world. However, I didn’t place that job description high enough in my list of importance. Don’t get me wrong, I needed to earn a living. I needed to pay for the fun I took my kids to enjoy, but I, like so many other parents, put the value of the corporate ladder before the quality of time my family got from me.

Before my son was diagnosed with brain cancer I wish I had realized how little the opinions of others really meant. I’ve always worked hard to be a likeable person and be easy to get along with. When relationships failed, as they often will, it would break my heart. I would spend so much of my energy worrying over what went wrong and how I could have changed the outcome of that relationship. If a “friend” had the wrong idea about who I was or what my agenda was, I spent way too much time trying to get them to see things from my perspective. I wish I had known none of that would matter. You see during my son’s fight for his life, we made his journey public. I wanted people to see what life was like with living with a child with cancer. By doing this I made myself and family vulnerable to the opinions of others. It didn’t take long for people to question my agenda and say hurtful things. I wish I had known then how little those people’s opinions mattered when it was all said and done. People will tell you what you should do, or how you should do it. They may question your every move. What I am glad that I know now, that their opinion of me is none of my business. All that matters is that everything I did/do is for my children.

My son died one week and three days shy of his 23rd month anniversary from being diagnosed with DIPG. He beat the odds and survived much longer than initially expected. From the moment he was diagnosed until the day he died, every ounce of me was poured into him and my other children. I will forever be a person who doesn’t care if there is a mess laying around in my floor, as long as I am taking that time and focusing on what is important….my family. I am thankful Richard’s fight taught me these things. I wish I hadn’t had to experience childhood cancer to learn that lesson. Please, hug your children. Please evaluate your life, and think, if your world was flipped upside down today, what would you forget about in order to be what your family needed? Every minute counts in life, and I promise you, if you’re aligned as you should be, when it’s all said and done all that matters is your family.

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!

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

People You Need To Meet #35: Ellen Grant

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JustinElliot

My son, Justin Elliott, lived 21 years, 3 months, 4 days and 4 and 1/2 hours. He went through a lot during his young life. When he was four, I divorced his father. Three years later, I moved him to a new town when I married Ed. Justin was almost 14 when I had to hold him while his father was taken off life support and immediately passed away.

Despite all this he grew up into an amazing young man. Justin had a plan, and the world was waiting for him. Education was extremely important to him. He decided to go away to college, attending a dual enrollment program, instead of completing his senior year. I was devastated because I wouldn’t get to enjoy being the mom of a senior. Turned out to be one the best decisions Justin made. That fall Justin matured and thrived. He loved college. Loved his professors, and loved being away from home!! He traveled, by himself, not even 18 years old, to interview at NYU. New York City is a far cry from the little town of Ellijay, Georgia. Of course he was accepted. I thought he should go to Georgia, but Justin was determined to be different. I can’t describe how proud I was of my young man. We celebrated his 18th birthday, and a month later the glass of life shattered into a million pieces.

Justin was home for the weekend. He called me, and said he had a horrible headache and was nauseated. I think now that I knew it was brain related. My mother had two aneurysms, and when something goes on in your head you get sick. But that couldn’t be possible. This was my healthy, athletic 18 year old. It must be a migraine, my sister had them. I understand the first one can be really bad. After several hours nothing was helping, and we headed to the emergency room. After a CT scan the doctor told me Justin had an aneurysm. I remember holding on to the bed rail then going to the bathroom so Justin would not see me hysterical. The memory of Justin being strapped into a helicopter at one in the morning is something I will never forget. Then followed several days of excruciating pain, lots of tests, too many different doctors, and no one who could tell us what was wrong. Then, a specialized MRI showed a tumor. Surgery was scheduled. They said the tumor was encapsulated. They would go in, pluck it out and we’d be on our merry way. Not. February 28th around 5:30, a doctor had to tell me and a huge crowd of family and friends that my only child had 6 months to one year to live. Another memory seared on my brain.

I won’t go into all the details but the next 3 years were filled with chemo, radiation, a year of being on a trial drug, more radiation, many other drugs, more surgery and way too many trips to doctors. Despite having to endure all of this Justin lived his life to the fullest, continuing with college, attending sporting events, going on trips and trying live a normal life.

What I wish I knew. I wish I didn’t know any of it. I wish I didn’t know the pain that Justin would go through. I wish I didn’t have to watch his dreams be shattered. I wish I didn’t know that Justin was more concerned about Ed and I watching him die than he was. I wish I didn’t have to bring him home from NYU, and I really wish I didn’t have to watch as those silent tears rolled down his cheeks on our way home from Athens when we were told the tumors had ” exploded with growth” and the end of out journey was near.

I wish I knew how to be the mother of a very independent young man with brain cancer. How can you let your child go to school a thousand miles away with brain cancer? How can you let him be two hours away, getting himself to treatments and doctor appointments, getting prescriptions filled? He was 18 and legally in charge. As hard as it was, I don’t regret letting him go. What if I had insisted that he stay home while everyone else was off going to college or working and definitely not being home with the parents? Justin wouldn’t let me take care of him. He just wanted to be normal, and he didn’t want anything to remind him that he had cancer. I will have to say that his favorite phrase was “fuck cancer”. Justin actually had a shirt with that on it. He wore it to doctor appointments. The only other time he would mention the word was when I asked him to unload the dishwasher. “I can’t, I have cancer!”

I wish I knew what he kept to himself during those years with cancer. I wish he would have talked to me about it. To this day I don’t know if he ever confided in anyone. His “other” mother, as I fondly call my best friend, texted him those last few weeks. She asked him if he was scared. His reply, “we aren’t supposed to talk about that”.

I could write volumes about Justin, the what ifs and the whys. He is my first thought when I wake and the last when I go to sleep. I will miss seeing him fall in love, get married and have children. I won’t get to see him have an amazing career and make his mark on this world. My biggest fear is that his memory will fade. I am so scared he will be forgotten. Ironically, as I have been writing this, I had to stop and attend a memorial service for Justin’s youth leader. It was much harder than I thought. Justin thrived with Leanne and “came into his own” as he grew up in the church with her. He was mentioned at the end of one of the eulogies today.

I am rambling as I have become accustomed to do. So what I really wish I knew:

How lonely I would be when it was all over. I am very social and having a house filled with family, friends and kids was great medicine for me. The house is now too quiet.

I wish I knew how much people really do care.

I wish I knew how much Justin loved me and what I really meant to him.

I wish I knew that I would become involved with some extraordinary women who would understand what I have been through and will for the rest of my life.

And finally, what I know know:

I am forever changed, and in some ways, for the better. There is a definite line in the sand: before diagnosis and after. I view life and make choices differently now. There is so much that just doesn’t matter anymore. And out of the darkness there will be light again.

52 People You Need To Meet: #24 Beni Hood Fries

52 People To Meet Posts

I am always intimidated by having to express into written word how I feel. I often feel that my words are inadequate; however, I was deeply honored when asked to share David’s and my story and to contribute to the poignant, powerful and touching blog “52 People You Should Meet”. The question posed to us was,” What I wish I had known?” This is obviously a very thought provoking question and not easy to answer.

David and I were married at the age of 21. I can honestly say that we did not know much at that time in our lives; however, being young, dumb and in love, we were sure that we could conquer the world. We did not exactly conquer the world, but we did build a good life. Over our 27 year marriage, we raised three children, adopted a few pets, learned many lessons (sometimes the hard way), made multiple moves, made many friends, shed a few tears and had many, many good laughs. Although, our life was not perfect, it was more than good, and we were most definitely happy. I knew that we were blessed. In the spring of 2007, our world literally crumbled around us. I do not think that anything could have prepared our family for the road that lay ahead of us.

In early April of 2007, David started to experience an odd warming or tingling sensation in the right corner of his mouth and the pads of his thumb and forefinger of his right hand. They were infrequent in the beginning but over time increased. The first time he told me about it, I actually laughed at him. I wish I had known that something so innocuous and seemingly benign were actually focal seizures. Those sensations were the first known signs of David’s brain tumor. It took until June before we knew what we were dealing with.  I can say with confidence that knowing about the brain tumor earlier would not have changed David’s outcome; however, the complications from surgery may have been less had the tumor been smaller when it was removed.

When David was first diagnosed with the brain tumor, I thought the worst of the worst had happened. I was wrong. In November of 2007, a virus settled in David’s spine and left him paralyzed. Although unusual, this was probably caused by his cancer treatment. He spent the next three months in three different hospitals. I watched horrified as my husband’s dignity was stripped from him. I spent countless nights sleeping in hospital chairs and learning how to care for a paralyzed patient. I was able to bring David home in February of 2008 and did my best to care for him. It was a privilege and honor to be David’s caregiver, but it was the hardest thing I have ever done in my life. I watched helplessly as he lost hope and became weaker each and every day until he died on July 19, 2008. It was gut-wrenching. I have said multiple times that had I known that he was going to spend his last days and months paralyzed and miserable, we would not have done treatment after his surgery. Instead, we would have just enjoyed what little time we had left together. With that said, I am not sure that it is possible to enjoy time with a loved one while waiting for them to die.

So many times, I have asked why? Why did a good man have to get sick and die? The answer has to be, why not? I drove myself crazy trying to understand how a young, vibrant, active and healthy man, could get so sick with brain cancer. Did he eat something? Was he exposed to something?   The truth is we will probably never know those answers. Life is not always fair, and really bad things do happen to really good people. I have also asked more times than I can count, did we do everything we could to save him? And yes, we did. We sought the best treatment from one of the best brain cancer centers in the country. David had Glioblastoma Multiforme which is the deadliest form of brain cancer there is. There was no cure for it then, and sadly, there is still no cure for it.

“What I wish I had known?” After thinking long and hard on that question, the answer is nothing. Life is not meant to have a crystal ball.   I personally think that knowing ahead of time about the wonderful surprises we will experience during our lives, will only dim their joy. And I think knowing ahead of time about the horrible things life will hold for us, will only paralyze us and prevent us from living fully and experiencing all the joy we can. As cheesy as it sounds, life is meant to be lived wholly and completely, and that cannot happen if we know what life will hold for us.

After David had died, it was almost impossible for me to wrap my head around the fact that the world kept going virtually unaltered, and my life was in pieces around me.   The pain was so intense that it literally took my breath away. The visions of that thirteen-month nightmare lived with the kids and I for months and even years. In fact, for a time, I was afraid that I had lost the previous 26 years because all I could see was the nightmare of the last 13 months of David’s life. Thankfully, over time, the good memories did return. I can say that, for the most part (we still have some bad days), the kids and I are doing well now. It has not been an easy road, but we have learned to experience and treasure life’s joys again. We have also learned not to feel guilty about it.

I always knew that David and I were blessed (and I still am) with an amazing family and wonderful friends. I will never be able to pay forward all of the love and kindness that was shown to us during David’s illness and the years following his death. My kids and I were shattered and shut out much of the world around us. Fortunately for us, our family and friends showed a lot of patience and did not give up on us. They were waiting when we were ready to join the world again.

We miss David each and every day, and it is not necessarily worse during holidays or special occasions. Although days like today, Father’s Day, still sting a lot. David was an amazing dad and loved his children tremendously. I have no doubt that David looks down on his adult children with nothing but pride. I see a piece of their wonderful dad in each of them and that brings me tremendous comfort. This is the sixth Father’s Day our children have had to whisper “Happy Father’s Day” to their dad and hope he hears. I know he hears…

With David Always in my Heart,

Beni

Editor’s Note: This post is about David Fries, Beni’s husband. It is not the same David that is mentioned in normal blog posts. David Pearson is my son’s name. Sorry for any confusion. – Amanda

52 People You Need To Meet: Special Edition – Michael Balasek

52 People To Meet Posts

Editor’s note: Heading into Father’s Day, we wanted to bring you a special perspective from a son. This was written a few days ago, but we were just now able to publish.

There are endless things I wish I had known. I wish I had known not to withdraw. I wish I had known to make the most of our time. I wish I had known to make the most of that time for my siblings. I wish I had known that was the last Kwikfish he’d set for me. I wish I had known that was my best shot at a buck with him standing over me. I wish I had known that could be our last car ride, our last conversation. I wish I had known to have a beer with him. I wish I had known what to ask him. I wish I had known how to say goodbye. I wish I had known just to say goodbye. I wish I had found a way to accept it, to allow it to feel more real, to allow myself just to feel it more. I wish I had known that I wanted to feel it more before I couldn’t. I wish I had known the diagnosis and what was to follow would be difficult. I wish I had actually appreciated what those difficulties were. I wish had known how quickly I’d get to this place.

Today marks ten years. Ten years ago to the date that my father passed away from a Glioblastoma. For the last ten years, I’ve used a desk calendar. Some were by Gary Larson, some by Avery. This year’s by Mead. And every new month, I’d write that date on the bottom-left corner. I suppose I never completely understood why, even reflecting now. Perhaps it was to remind myself, or to track those annual milestones, or because it just became habit. Perhaps it was because somewhere in the impending dampness and blurriness I actually always knew this place was close.

There was a time where the emotions were raw. Where anything could get in through the cracks. A gust of wind. A moment alone. The dark. My reflection. Silence. Anything. Their arrival seemed always ill-timed and inconvenient. I hated that I felt that way. I still hate that I felt that way. The emotions came in waves. They would crash and they’d break over everything. I’d feel submerged. I’d feel a growing pressure. I’d feel buried. I’d want to move out of their path. I’d want to swim to the surface. I wanted to push them out of focus, or bring them in to focus. I wanted them just to be anything but what they were. I associated them with grief, and loss, and sadness, and feeling alone, and a helplessness, and with an unknown, and with a resentment from what I knew, and with a resentment from what I had not had the chance to know. Which felt different from the unknown. As if one I was ill-equipped and inevitably stumbling my way toward, regardless of a constant, yet inconsequential, grasping for substance, and awareness, and understanding. And as if the other were fleeting pieces of my being. Pieces of who I was and who I should become. All fleeting from that same grasp. I knew I was losing pieces, but I wasn’t sure which ones, what they were for, how they worked with the ones I’d get to keep. All of it, it all found the cracks. And I couldn’t separate it. I couldn’t distinguish it. I couldn’t bring it into focus, or push it out of view enough. They were piercing. They drowned out and they blurred the edges of all. They would overwhelm me. And then just like that they wouldn’t. And I thought that was how it worked. I assumed the tide would change. But, I wish I had known I’d miss it when it did.

After a while, the emotions became less sharp. The edges still felt blurred, but in a more constant and droning sense. The colors blended. The waves were no longer inconvenient; they were no longer waves at all. They just rippled in and out every so often. They were similar, they were familiar, but they felt like echoes. Sounds, but distant and peripheral. The sparks changed. A sunrise. The bitterness of a pine needle. The sound of an aluminum boat skipping across a lake. A meadow. Wading into a stream. Cool neon-green backing in my fingertips. A contrail. Turbulence. The gleams in the flecks of my siblings’ eyes when they’d smile. The smell of dill. The view from 11,460 feet. My handwriting. A sunset. The smallest things. The closest things. The ripples became welcomed. But over time, those cracks tightened more. The blurriness remained, but the current lessened and what came in and out had slowed and had dulled and had greyed. There was no inconvenience. And the convenience brought guilt. I craved the sharpness. I craved the contrast. I sought it out. Whether from a picture, an envelope, a voicemail I’d saved, or Annie’s Song. I welcomed the tears. I welcomed the feeling. I welcomed the waves. I welcomed the focus

The diagnosis eroded a false sense of control. While that helplessness was uncomfortable, within the uncomfortable nested the comfortable. And rather than accept and live within the disorder, the helplessness stagnated into denial. I did not appreciate the diagnosis as difficult. I did not appreciate the difficulty of what followed. Providence became stationary, and the denial bled, eclipsing the recognition of the imperfect opportunities I still had. Without knowing, I let those opportunities slip by. And I withdrew. I impeded adversity from building character, instead allowing it to build a wall of regret. That wall took years to dismantle. In those years, I not only missed those imperfect opportunities, I missed the embracing their loss.

Ten years today. The cracks seemed filled, the emotions sanded. The memories out of reach, but only just. The blurriness feels too damp. There is no longer provocation in the sparks. And I can’t recall how or when I got to the place. I miss my father. I miss missing my father. I wish I had allowed myself to love more. I wish I had allowed myself to hurt more. I wish had known how quickly I’d get to this place.

 

 

52 People You Need to Meet: #23 Bridgit Fennell

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Leaning In

If I knew that GBM was the monster it is when my husband was diagnosed, I would have done things differently. I am not sure how most life insurance is written, but ours is such that if the doctor puts in the patient’s chart that they are “very seriously ill”, you can get benefits from the moment those words hit the paper. I really wish I had known to request half our life insurance. I didn’t know. The prognosis alone was terminal. Isn’t that, by definition, very seriously ill? If I had only known to ask to read his chart. If only I had known that was a possibility, we might have had more time and finances to dream big dreams. I have always told my children, “money doesn’t matter people do.”

As a family we were in “shock and awe” mode. It was a huge blessing to be a part of and to be across the street from the NIH where we had access to the experts in this field. It was three days after Christmas when he had his biopsy. It was my birthday when we got the diagnosis. As with all of my GBM sisters, there is a battle that never seems to end. It is a battle for life, for treatment to extend life, a battle for quality of life, a battle for time, a battle to find the words, a battle to stay close to keep those who want personal closure from stealing your time and your energy.

I lived in a bubble of “how can I get more time for the children and myself?” If only I knew the written diagnosis of “very seriously ill” could have opened doors to benevolent groups. They could have helped us find a safe way to see Europe – something he really wanted to do. If only I did what the nurse told me prior to the biopsy – take him for a romantic weekend at a posh hotel. I thought she had to be insane. Who could be romantic in the face of this unknown thing in his head? But we could have had just time to hug, sleep in the shape of a spoon, and to cry. We could do none of those things. We had two teenagers, home schooling, one full time job, one part time job, a house, three cats, three fish, a ballerina, and one angry child. If only I had the insurance money, or at least the half I could get at the onset. There was a lot of help out there if the doctors had the strength to write down the truth.

If I had that knowledge, I would have had help to get family and close friends to visit him without any expense to them. That would have helped me not have to dodge all the “whys” and the questions after some found out. If only I had the strength of spirit to put my husband in a tux and my teenage daughter in a gown. To take advantage of the offer to photograph them walking down the aisle in the hospital chapel. If only I had done that, she would have those photos and videos for the day when she actually does get married. If only I had done that. If they had told me he was very seriously ill on paper on his chart. I heard the words and read the internet sites.

If only it wasn’t so unbelievable to hear Glioblastoma Multiforme. It was my birthday after all. We were aware that the diagnosis was coming, and it took weeks longer than estimated. We prayed and hoped but as time passed we began to feel that heavy heart. If only I had the Facebook ladies to walk me through this. If only I knew how many have walked in my shoes. You feel alone in that moment. In a box, where all around you, people are talking, explaining, offering tissues. Time has slowed to a thick, “hard to breath and swallow” pace. Vision is blurred through tears that coat your eyes and fill and fall as they go.

If only I could have gotten my husband to start writing “those” letters early on while his mind was still sharp. If only I could have video taped his messages to the children. If only I could have bagged clothes he had worn in Ziploc bags to preserve his smell. If only I had believed from the beginning that he was passing – each day just one more closer to heaven. I have faith and hope in my Eternal Father. I know His Word is true. I know I will see my husband again.

I have cared for two other cancer patients before this. My grandfather moved in with us as newly weds and died in our home three years later from prostate cancer that metastasized to his bones. Ten years and 13 days later, his daughter, my mom, died in my arms after battling stage four colon cancer. Seven years and seven days from her passing is when we saw the MRI of my husband’s brain. If I had just looked back and pushed aside the shock and pain to know that his diagnosis would have no good outcome.

He was the love of my life. We should have dropped all normalcy and done whatever he wanted for as long as he could. If only I had known …..You can read, you can listen to others in the know….but you have to really know it yourself deep in your core. You need the strength of Samson, the resolve of a warrior, the brain of Einstein with the wit of Ben Franklin.

We are only human and made up of the way we were raised and the faith we have been taught. We hold fast to those truths. I would have done so many things if I had only known. I did the best I could within the parameters of what I was given. I guess my hope is that there was an abundance of love for him and he never lacked for love. I didn’t give him castles in England, Germany or France, but God has his castle in heaven and my love lives there. I will see you one day, my love, and much later our children and theirs…..Happy Anniversary, Ken. 06/08/1991. I will always love you.

Bridgit Fennell hands