It’s Kind of a Big Deal

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 Should Meet: #36 Melissa White

Sweet, little Adele

What I wish I had known before our barely toddler got brain cancer…

I’ve always been the kind of person that likes to stay busy, have a hand in everything. I like to do as much at our kid’s school as possible, be involved with our parish, help in our community. I had no idea how much we would need all those people. I had no idea that they would rally around us before we even knew we needed it. I’m thinking back to those first days, weeks, months of Adele’s diagnosis and treatment. If someone had asked what we needed instead of just stepping up and doing it, I don’t think I would have known what to say. If I did have an idea, I would have been too proud to voice it. I do now know what we needed and were blessed with, and I hope it helps other friends and families who want to know how to help.

Let’s start with just how debilitating it can be to have a sick kid; a “really sick, possibly won’t make” it kid. It was literally all I could do to roll out of bed. I probably functioned on about 50% of my brain during the worst times, the chemo, waiting on those crucial MRI’s. Nothing extra was happening, lots of McDonald’s was consumed, and we limped along. The worry was physically and mentally exhausting. I had no idea how much worry could knock a person down. Thankfully, I had given up all of my volunteer duties and part time work as soon as Adele got sick. I gave myself permission to focus solely on her and our family being together. Our world narrowed in a big way to the most critical, most important things and everything else had to go, at least for a while.

The best thing anyone did, and continue to do, is pray for Adele. I’ll never forget someone’s message “when you are too tired to pray, I’m praying.” That was, and still is, incredibly comforting. I did have times where there was nothing left, and I was so thankful for the folks out there praying for Adele. To this day, prayer holds us up. We’ve received several relics and medals that we keep near Adele (she has relics of St. Benedict, Gianna and Gerard under her crib sheet). She also has a miraculous medal under there. You can’t really put a chain around a toddler’s neck so sleeping with them (safely) was the next best thing.

Food was probably second best on the list of things folks did. Our kids would have eaten chicken nuggets every night if it wasn’t for our amazing parish, friends, and even strangers. Even better, everyone brought tons of food, so even though we only got a few meals each week, there was plenty of food. Don’t give someone your dishes, please use a foil pan that they can throw away. The last thing they need is to worry about returning your Pyrex. Some of my favorite meals were the snacky ones where we could just grab bits here and there. Also awesome was the meal that could be eaten or frozen. Sometimes we were either out of town or needed to eat other food first. The ability to freeze a meal and pull it out later was wonderful.

Another huge blessing was a family that single handedly took over our lawn care. Honestly, we probably never would have remembered to mow. Even if we did remember, we were tired or gone or just wanted to be together as a family. This goes for the other every day tasks of life too. Go fold laundry or pool cash together with friends and send someone to clean house. We were blessed with a couple different friends who gifted us housecleaning, and it was amazing. The sheets never would have gotten changed otherwise. When you spend an hour or two on someone’s every day work, you are gifting them an hour or two. That time is so precious.

Don’t ask to mow, just show up and do it. I always felt guilty saying yes to help, and I was so busy during hospital stays that I couldn’t keep up with texts, calls and emails. When I did have a minute, there was no cell service or I just didn’t have the energy. Just drop off a meal, or just take a Coke to the hospital. And then go home. I know that sounds mean, but it takes a lot of extra energy to entertain a visitor. Like I said, this is my experience, everyone is different. There were a few, very low maintenance visitors that were very helpful and without them Peter and I would have lost our minds.

Please don’t stop emailing or texting; just don’t expect a response. We had a very busy, social life before cancer struck, and I felt very isolated at times. Even if I didn’t reply, I loved reading the emails and messages. It meant a lot that folks were thinking about and praying for us. A lot of times the message was exactly what we needed right then too, like the friend praying when we were too tired. I know you don’t know what to say, just “Hi, I’m praying” is good.

Our parish, friends and family raised cash for us and created a non-profit fund for Adele at a local bank. This was a huge Godsend that we didn’t even realize would need and continue to need. Medical costs of course are huge, and then all the extras like travel costs, extra eating out when you don’t have the energy to plan a meal, things you didn’t realize you would need (like the time our one week hospital stay turned into 3 weeks.) We have been so blessed with financial support, and it made a huge, huge difference in our stress level. Not having to worry about missing bills or not having gas money was and is a major blessing. It’s also so good for our hearts and souls to see all the folks pouring out their love to Adele in such a tangible way.

We had a core of consistent hospital visitors that kept us fed and sane, and they rank right up there in the top three best things folks did for us. The guys brought food that didn’t come from the cafeteria; they were helpful, and they didn’t care if we hadn’t showered for four days. They would even hold Adele (who was sometimes screaming because she felt like crap and just wanted Mommy or Daddy.) They didn’t require anything from us, and they filled our tanks so we could make it another day. Being in the hospital is rough, being there and watching your child suffer is almost unbearable.

My husband reminded me how much our friends and family stepped up to help with our three big kids while Adele was in the hospital. There is no way we would have stayed sane, and Peter could have kept working without all the help. Peter’s work has been amazing as well, God is definitely guiding us.

We, well, mostly Adele, got “stuff” as well, along the way. Some of it was very needed, like the Basket of Hope we got after brain surgery in St. Louis. She was feeling better, getting bored, and that came at the perfect time. Others mentioned items like quarters for laundry and vending machines, stamps and stationary, actual mail (this was especially nice for our big kids, several thoughtful folks sent them letters and items.) Someone else to send thank you notes on behalf of the recipient – I could not keep up with thank you notes. We were literally in the hospital for almost 6 months with little breaks in between.

There were also sibling packs from the hospital and other folks that helped our big kids not feel so left out. This really depends on the age of the siblings though, it might not be so helpful for smaller kids. We did get a little overwhelmed with toys and blankies at one point, so temper your toy shopping. I will say that twice we got two big grab bags, those were the best. It was lots of random stuff, mostly one time use and/or disposable, for mommy, daddy and Adele. It was a great distraction and time filler and it was great stuff like gum, little snacks, bottled water and bubbles. All excellent items that we wouldn’t have to pack up when we eventually went home.

Speaking of going home, kids on chemo are must more susceptible to germs so things like Clorox wipes and Purell are always nice. That housecleaning comes in nice here too. You don’t realize the level of clean you have to obtain until your kids immune system is completely wiped out and a germ normal folks encounter every day could send them right back to the hospital.

In summary, prayer is number one. Pray, pray, pray. Just knowing people cared about us and didn’t forget us was so important. And then just the regular every day stuff we all do with barely a thought like eating and home maintenance. Time is a huge blessing, anything you can do to give a family more time together is huge. And it probably doesn’t even cost you any money. Stuff is just extra, little stuff that won’t create more work (i.e. finding a place to put or pack it).

Thank you Jesus for all the folks you sent our way, for all the folks you continue to send our way. You’ve blessed us abundantly. Please bless others in need the same way. Please grant Adele complete healing from cancer and many, many, many years with us on Earth. Jesus, we trust in you.

Editor’s Note: If you would like to keep up with little Adele and her journey, you can follow Melissa’s blog here: http://workinprogress-melissa.blogspot.com/?m=1

52 People You Need To Meet: #22 Richard Haddock

David Pearson is my stepson, who I immediately liked when we first met. He was a very odd kid and loved to be different. Whenever someone told him that he was weird, he would simply smile and say “thank you”. David never cared what anyone thought about him and was always befriending the friendless. He would almost seek out the ones who looked wounded, or in need of a smile, or a joke, or to say something totally unexpected. David treated everyone like his best friend, and they all loved him for it.

David was a stranger to no one, and he is an amazing, wonderful soul. David Pearson was diagnosed with brain cancer, at only 16. This is what I wish I knew before then. Growing up, my parents, especially my mom, taught me that I could be anything, do anything. When David was diagnosed with a GBM (glioblastoma multiforme), my thought was that everything was solvable, that any issue could be analyzed, understood, and fixed, but I was wrong. There is currently no cure for GBM, and the standard of care hasn’t changed much in 30 years.

When we went to the hospital to help David and figure out what to do, we saw that there were lots of children with cancer. One that particularly stood out was a young man named Justin, who had leukemia. His mom, Kathleen was a nurse, and she seemed to know her way around the hospital. She was very kind to us and immediately took an interest in David. Justin and David became hospital buddies and in the short time they were together, became friends. I assumed that Justin would be fine, and that eventually he would be a healthy young man, able to live his life. I naively wished that David had something “curable” like Leukemia.

We weren’t sure what to do, since David was living in Virginia, and we lived in Kansas, but our friends, Jamie and Jennifer offered to let us stay in their house in Virginia while David was going through treatments. We essentially moved into their home, even bringing our dog, Cooper, to stay with them. They were awesome hosts and we could not have done it without them. They continue to help us as well as others.

We weren’t sure what to do with our cats, still in Kansas, and how to look after our home, but our neighbors, Jay and Michelle quickly offered to help with feeding the cats and watching over the house. It was one more thing that just got handled and we didn’t have to worry about. As we worked to help David with his health, we found that there were times that we simply could not get everything done, and that’s when Jay and Teresa stepped in and helped with all sorts of projects. There are so many kids and parents who did little things to help us along the way! Please forgive me for not naming everyone here.

A few months after David’s diagnosis, we got word that Justin had lost his battle with leukemia, and we were stunned. I thought that Justin would be okay,  but the battle had just become too much, and he lost the fight. We went to Justin’s visitation and waited for two hours to pay our respects. When we finally made it to Kathleen, she asked about David. I was heartbroken and amidst her pain, Kathleen was asking about David. Kathleen has been an amazing friend, who continues to fight for cancer research and is a treasured friend.

As we continued working to find a cure for David, we came into contact with many amazing nurses, doctors, researchers and others who are doing their best to make things better for families going through this. Dr. Hwang and Dr. Packer of Children’s Hospital in DC were very vigilant to do everything they could to help us. They were also instrumental in finding a clinical trial for David at Children’s Hospital of Pittsburgh.

Dr. Jakacki treated David in Pittsburgh with a new immunology study that helped him for 10 months until the cancer got smarter and the cancer began to grow. All through our journey, we had the help from many friends, who did things to help that we could never repay. Whatever we needed, friends, and people we didn’t know were our friends yet, helped us in ways that were simply amazing.

David lost his battle at the young age of 18. I think of David every day, and think of what might have been. I miss his sense of humor, his amazing personality, his love of everyone, and his amazing faith. On the day of David’s funeral, a lot of our friends came to pay their respects. I’ve never been one who goes to funerals because they’re uncomfortable. Many people came to show their love of David, including a bunch of his friends from high school. They all wore Hawaiian shirts because David always liked to wear them to be different and stand out.

I was not prepared to see my friends David and Loren show up, as well as Dr. Hwang among many others. My brother, David, also made a point to come and be there for us. It was a very humbling day, and changed my view of funerals. When David’s battle started, I thought that we would be able to fix him, to make the cancer go away. My parents taught me that anything was possible, and even though I’d had various setbacks in my life, I always came through it.

David’s journey, though, was different. Here was this battle with cancer that David lost, but is that it? Is that where it stops? Amanda and I decided that even though David’s battle was over here on earth, that there were many more children and adults who are fighting this battle every day. Many were winning, but too many are losing. After a year or so of thinking about what to do, and trying to “recover” from such a loss, we made a decision to help. The battle for David may be lost, but the war against cancer is certainly not over.

We formed the Dragon Master Foundation in 2013 to bring big data technology to medical research. When we started, we had no idea how many people would offer to help, even though they had no family members who had ever taken on the cancer battle. We’ve been very humbled by all the help from many different people, including Angie, Miles, Kimberly, Roger, David, Linda, Jolee and many others.

I often ask myself what it means to be a Christian, and I think that our friends and family have shown me in many ways what that means. As we struggled with what to do throughout this ordeal, and ultimately our loss, Amanda and I would pray together, and we would feel a sense of calm that I cannot explain nor will I try. Things just happened for us that we can’t explain, I think, because we were connected to something greater than ourselves.

Some days I see David’s picture and just smile. He always made me laugh, and I think of what a privilege it was to have known him and be part of his journey. The picture of David with this article is just a few weeks before his diagnosis. You can see that David was a handsome young man, full of life and laughter and love and promise.

People have told me that it gets easier over time, but it really doesn’t. It makes me sad to think of what might have been. That full life that David had envisioned is gone, and his absence is felt every day. It doesn’t get easier, you just learn to live with it.

Our friends did amazing stuff for us. From all over the country, we have friends who have done so much for us we could never repay them. Even now, we have new friends who have come into our life after David died, and really want to help us with our foundation.

Some days I wonder why they help us so much, but I’m trying to be gracious and just say thank you without question. It hasn’t been easy, but our friends have made it easier for us. I wish I’d known how to be the kind of friend that all of the people who helped us through this journey have been. They figured out what we needed, and then just did it – they didn’t say to call if we needed anything. Friends show up when you’re in need – especially at the funerals of loved ones. I wish I’d known how to be a better friend.

We’re all on a journey that we don’t know the script to, and some days we’re just trying to get through the day. Be gentle, be kind and take care of each other. Life isn’t easy, but with the help of friends and family it’s well worth the ride. Thank you is not enough – but thank you to all the friends who have helped us and continue to help in this journey.

Editor’s note: You can keep track of Dragon Master Foundation at the website: http://www.dragonmasterfoundation.org , on the Facebook page, or on Twitter @DragonMasterFdn .

52 People You Need To Meet: #12 Shawn Ratcliffe

What I Wish I Knew Before My Son Was Diagnosed with Brain Cancer

I wish I had known how big a role you truly play in the medical care of your loved one. TRUST YOUR INSTINCTS! They are nearly always right and you know your family member much better than the doctors. Also, make friends with the nurses – they can be a huge advocate when you need a different opinion or help in understanding the “system” or even getting past some of the quagmire you encounter with all the different specialists insisting on their unique treatment plan.  Ask to see the “chart” (if they will let you) so that you can better understand just what the doctors might be thinking. If you don’t feel comfortable with the answers you are given, keep asking, don’t be brushed aside as if you are too paranoid (“just being a Mom”), don’t back down, and know that the doctors are doing their best but in the situation of brain tumors their best is still greatly lacking in knowledge and expertise.  Every patient is different, and YOU are the best one to help your loved one. From diagnosis to death is a rollercoaster ride on every possible level, take one day at a time and always look for the positives.

For us, it started out like any other Saturday morning.  Matt and I had breakfast, no one else was up yet. He was off to get his eyes checked as we were sure that was what was causing his headaches. Not long after he arrived at the Dr’s office he sent me a text “They want me to get an MRI”. I was stunned, and in my heart, I knew we were headed for something scary.  Within a few hours, we heard the words that would change our lives forever. “A very large mass on the right front lobe of your brain. It is cancer.” He was 20 years old.  By Sunday afternoon, 24 hours later, the tennis ball size tumor had been removed, or at least 90% of it. Matty bounced back like a true warrior, despite major pain and swelling, and on Thursday afternoon, he and I walked out of the hospital, confident that the worst was behind us.  Naïve, I know.

Within a few weeks, the swelling was so bad that they had to put in a VP shunt.  Within about a month, they removed the shunt as it had caused massive infection.  He was now experiencing Grand Mal seizures, loss of memory and functionality.  Shortly after that, he was fired from his job, and we added major anxiety and depression to our list of issues.    Basically, everything that could go wrong did go wrong.  He continued to focus on school, and within just over a year, he graduated top of his class at ITT Tech. It was truly a highlight of his life.   After 6 weeks of radiation, 11 months of chemo, and 5 stays in the hospital we finally heard the words “no evidence of tumor”, and it looked like we were finally getting a break!

With his confidence at an all-time high, he accepted a job in San Francisco, California, and we moved him out there.  I was, of course, devastated and proud all at the same time.  There were many struggles during the 18 months he was there.  He had just gotten his dream job working for Google when we realized the infection had never really gone away, and two more surgeries would be required.  The first was to remove the infected brain plate and start him on aggressive antibiotics.  Of course, during that time the cancer returned, and by the time they were able to replace the brain plate, the tumor had grown to the size of a fist.  It was stage 4 and angry.  The doctor was so aggressive in the recession of the tumor for the fifth and final surgery that Matty lost half of his eyesight in both eyes, the use of his entire left side, his short term memory, and some of his cognitive skills.  We managed to get him home to Valley Center, Kansas after an extensive stay in the hospital and quickly signed up for a clinical trial through Mayo Clinic.  But to no avail.

Just days after his 24^th birthday, we were told there was nothing more they could do.  Matty wanted to go home and party with his family and friends and that is just what we did.  For the 3 weeks and 3 days he was with us, we opened our home to anyone, anytime.  Friends and family came from all over the country to spend time with him, reminisce about the good times and embrace the present, soaking in every moment with him. It was such a difficult time filled with tears, laughter, heartbreak, stress, and always love. Lots of love.

Matthew came into this world on a Sunday morning at 8:53am as a content, happy baby boy and left on a Sunday morning at 8:35am as a peaceful young man ready to let go of this life and seek out new adventures. It was a true privilege to be with my son for both. I cherish the memories that help me never forget, help me learn, help me survive.

During his entire fight my son displayed a kindness and gentleness that I could only watch, I felt none of that.  He always thanked everyone for their assistance and never lost his patience, despite severe pain at times.  He was constantly trying to help people feel comfortable with his cancer, with a ready quip or comeback to make them laugh.  Often times when a nurse finally arrived with pain meds to help with a horrible headache, he would purpose marriage and make them know he appreciated their efforts. I, on the other hand, was tenacious if not demanding when it came to his care and pain management.  His last effort to help others was to donate his body to science.  It was his hope that somehow he just might help find a cure so others would not have to endure what he did.

My wish is for everyone to enjoy today, whatever it brings, and make the most of it.   My son is gone in body, but he lives on in our hearts and our memories.  I am a better person having experienced this pain and heartache, no matter how awful it has seemed at times. It has softened the rough edges, dimmed the harsh blacks and whites and helped me focus more on the moment. I have finally come to a sort of peace with the fact that I’m alive and healthy, despite my desperate pleas that I be allowed to somehow take his place.  Matthew is my hero, and I just hope that I can make him as proud of me as I am of him!  Live, Laugh, Love

 

 

 

 

We Have Three Months

February, March, and April. That is what stands between us and Brain Tumor Awareness Month. There is a lot of work to be done if we want to see real change this year. Last May, I posted some tips, but by then it is too late. If we want to see gray in May, we need to start asking now. Please take a few minutes to write to your favorite newspaper, tv station, magazine, etc and tell them about brain tumors and brain cancer. The more people who do this, the more they will understand it is a story their readers/viewers care about.

Now is also the time to plan your events for May. We are working on Concert to Cure (slight name change from last year) in Wichita, and we are lending what support we can to other events around the country. Race for Hope in Des Moines is in its second year, and they have big fundraising goals for this year. I’d love to hear about what is planned in your area. Please post a link, and I’ll try to get events posted on the Operation: ABC “Annihilate Brain Cancer” Facebook page.

In the meanwhile, if you are looking for some inspiration, or just need a cool new shirt, check out this great design to benefit both Dragon Master Foundation and National Brain Tumor Society:

http://www.zazzle.com/brain_tumor_awareness_t_shirt-235201354207178397?color=purple&size=a_m&style=basic_tshirt_light&view=113158993915508071

52 People You Need To Meet

With 2013 drawing to a close, I have been wondering what I can do to make 2014 really stand out as a year we draw attention to brain cancer. My son was diagnosed in 2010. He passed away in 2012. And here we are, almost to 2014, and virtually nothing has changed. I mean, I know that my circle of friends is hyper-aware of brain cancer now, but the world at large still isn’t. No new treatments have come along that are helping patients beat this disease. Even today, a little boy is being laid to rest from “Stage 3” brain cancer. I know all cancers are bad. I know. But it is somehow more insidious when it is in their head. When it can’t be touched by surgery or most other treatments. When you can’t see it growing, but it is killing you all the same. I can think of few things more horrible than brain cancer, and since it is the one I’m most acquainted with, it is the one I’m charged with changing. So back to my pondering… How do we make a difference in 2014?

The first thing is make a more regular effort to bring awareness. As you can tell from my posts, I don’t feel inspired to write blog posts every day. Regular posts, however, are the best way to keep brain cancer awareness as a “top of mind” topic. So I had an idea. Why not get some of my friends to help by writing guest posts? It occurred to me that in my caregiver support group, we have over 200 people, so even if they were the only ones who responded, we could fill each week with people to spare. I tossed the idea out to them and the response was overwhelming! So we are on!! Each week in 2014, we will share something with you from this writing prompt:

“What I wish I knew before my_____ was diagnosed with cancer.”

It might be their husband, daughter, best friend, or cousin. It might even be someone they never met!  We want to raise awareness for brain cancer research, but in the process, we think these stories can give families and friends the tools they need to fight together as a team. To ask the right questions. To offer the right comfort. To be on fire for a cure.

These people are all passionate about helping others and raising awareness for cancer research. There will be at least 52 different people with different perspectives who have a message for you. I’m really excited to see what 2014 will hold! I hope you will join us on this journey, and share these posts with your friends.