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.

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.

September

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

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

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

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