Paradigm Shift in Research

Uncategorized

We want to invite you to be part of something exciting in 2014, something that could literally change the world.

In the latter part of 2013, right here in Wichita, the Dragon Master Foundation was formed to vastly improve the way cancer research is conducted. By pulling together resources from hospitals and research organizations who have never before been able to collaborate, we plan to use “big data” to simplify and speed the work of cancer researchers. The scientists we have talked to are excited about the possibilities. One of them told us that this would change the way they do cancer research. Pretty cool, huh?

We really believe that with this database, a researcher will cure cancer. We just need to build the database. That’s where you come in. We will be holding a number of events to bring awareness to the project and raise much needed funding to build the database. Will you please include us in your schedule and budget for 2014? We need community leaders to help us bring this database to fruition and save lives. We need people just like you to understand this project and help us bring it to a national, and eventually international, scale.

If you have some expertise that you think could help us, please get in touch with us. We want to talk to you if you are interested in the project – whether you have technical knowledge or just time to volunteer, we can use your help.

We have two events on the horizon that we can tell you about right now. One is Concert to Cure, which is a fundraiser that started in Wichita, KS. We have people interested in hosting similar events around the U.S. this year, so we are excited that more people might be able to get involved. The second event is Race for Hope in Des Moines, IA. This is a 5K event, also in its second year, that raises money for both the National Brain Tumor Association and Dragon Master Foundation. If you are interested in doing an event in your area, please let us know. We will be announcing other events as the year progresses, so stay tuned!

We are passionate about finding a cure for brain cancer, and we hope that by sharing the #52blog stories, you will come to understand why we feel it is important to start there. Ultimately, we think our database will help all cancer researchers, though, and we live for the day that we can prevent and cure all forms of cancer.

To learn more about what we are doing, please check out our website: http://www.dragonmasterfoundation.org

52 People You Need To Meet: #4 Angela Heckard

52 People To Meet Posts

What I Wish I Knew Before my Husband was Diagnosed With Brain Cancer.

January 5, 2011 my husband, Todd, was diagnosed with Grade III Anaplastic Astrocytoma of the Left Temporal Lobe.  He had suffered a seizure exactly one month prior, just before leaving the house to watch Sunday football with the guys.  My husband passed away on August 12, 2012, shortly after turning 47, always believing that he would beat this monster, always having hope.

His face cradled in my hands as he took his last breath… a moment, a sight, a sound, the most devastating pain that I will forever carry with me.  Those are things that I can never escape as his final breaths often invade my thoughts without warning, without mercy, and very often publicly, leaving me to seem an unstable woman, tears streaming, as my brain favors the rewind button.

I miss my husband more than I can ever explain to anyone, whether they knew us or not. Todd was my husband, my lover, my personal comedian and singer, my best friend and sometimes worst enemy.  The following are some of the things that I wish I knew before Brain Cancer devastated our lives.

I wish I knew, truly knew, to the extent that I do now, how lucky I am for those that I have in my life.  My friends are not merely friends, but family, maybe not by blood but my family nonetheless.  They have supported me, stood by me, and helped me in ways and times when I didn’t think I could be helped.  Some sat with my husband while I grocery shopped, many had provided food and cooked meals, when eating was the last thing on my mind.  Some were there for moral support, to take a breather, to laugh with their silly antics or have a glass of wine, sometimes bottle, late at night when the house was quiet.  And then there were some who at the most critical of times, never left my side.  Drove me to finalize arrangements and choose the options they knew we wanted, even though I could not verbalize them myself.  The one who dressed me, fixed my hair and makeup and found the things that I would constantly misplace, except for that key.  Only Todd knows where the key is hiding.  And then too, the Warrior Women, that wonderful group of ladies, that embrace and support those of us affected.   The love and support of my friends, to this day, continues to humble me to my very being.  I will be there for them as they have been for me, although I pray for them that it is never needed.

I wish I knew the phrase “Let me know if you ever need anything” is such a cop out.  Until this beast affected my family I may have used those words.  Now I know better.  Now I know that I need to look at the individual, take in their struggles, access the situation and jump right in and provide what is needed.  What I know is that those of us struggling will never ask for help, we will keep struggling, keep fighting, against better judgment, because maybe, just maybe, asking means giving in, giving up.

I wish I had known that the phrase “God will never give you more than you can handle” is something that someone made up along the way to comfort those experiencing the harsh realities of life.  You will be given more than you can handle, some more than others.  Try to overcome the desire to slap this person.  They mean well and to their credit, may have never experienced what we have. Those of us left behind.  The wives and husbands, mothers and fathers, sisters and brothers, nieces and nephews and friends, we understand that we will constantly be challenged.

I wish I knew that all of these years together we were not living life, we were merely existing, going about our days as we had each day before.  One night we sat talking, Todd and I, and he discussed all that he wished he had done differently, and the choices he made that he would have changed.  Less time working after work, more vacations as a family and less side jobs done while on “vacation”.  He would have spent more time with me instead of the guys, he would have spent more time with our son instead of beers with friends, had he known what beast was within.  I came to realize that we went through the motions of every day as we had the day before, the mapped out course of our lives, I have forced myself to step outside of my comfort zone, that safe refuge that I had resided all these years.  Maybe it is only in baby steps but I’m doing it, one step at a time.  Fear of heights put aside, I went zip-lining.  And there were butterflies; butterflies were everywhere, just like the day we laid him to rest.  I learned to ride a motorcycle.  Just before taking my test I was nearly in a panic because I hadn’t had that confirmation, it appeared: my butterfly.  I think he is showing his support and smiling down on me for these tentative steps.

I wish I had known that brain tumors are so devastatingly deceiving and that the decline can happen so quickly. Often those with brain cancer do not appear unhealthy.  I didn’t know I would hear “I didn’t know he was so sick.”  I also didn’t know that last week, those final days, I would have to say goodbye.  Two weeks before. Three weeks before. Yes, there was decline, but I didn’t know.  I didn’t know that my love would be gone in a blink of an eye.  I wish I knew that my thoughts would flood, often without warning, of all our years together.  I wish I knew that I would break down in public because of a song that is playing.

I wish I knew that I am a warrior, not Xena, just a warrior.  That I actively engaged in war, on my home-front.  A war that I had never imagined that that I would have to fight, nor was strong enough to endure.  I promised Todd that fateful day in January of 2011 that I would slay dragons for him if I had to, and in his memory I will continue to fight. I fight in the memory of my Hero Angel.

52 People You Need To Meet: #3 Danae Hischke

Uncategorized

What I wish I had known before my son was diagnosed with cancer.

My oldest son, Jordan, was diagnosed with a Spinal Cord Glioblastoma when he was 22 years old. Chances are you’ve never heard of it. It’s one of those “rare” cancers that few doctors, even oncologists, ever encounter in their careers. Jordan also had moderate/severe autism. My husband and I were not new at advocating for Jordan’s needs but I wish I had known, could somehow have been prepared, for how much farther we would have to go after he received a rare cancer diagnosis.

I’ve worked as a primary clinic nurse for 30 years so I’ve seen a lot over the years. Nothing prepared me for being the mother of a child with cancer. I wish I had known how much I would need to trust my instincts, my gut feelings…

Our cancer journey started in January of 2009 when Jordan seemed to have some difficulty with his left ankle. It was difficult to step up into the school bus or our van. We took him to our doctor who x-rayed his ankle and thought maybe it was sprained. A week later Jordan was saying that his knee hurt. Another trip to the doctor and another “clean” x-ray. A week later and my food loving son is refusing to walk to the cafeteria at work. January 20th was his last day of work and also mine. We took him to the Orthopedic specialist we had seen in Milwaukee for an unrelated problem. At this point he was in a wheelchair because he couldn’t walk without holding onto the wall or a person. Blood tests, bone scans, x-rays. Everything “normal”. So our family is at home with a young disabled adult man who can’t walk. But everything is “fine”. On February 4th, when my 200 lb husband had to carry my 180 lb son down the stairs we were at our wit’s end. We drove to the ER (again!) and were determined to stay there until we were given answers.

With the help of Jordan’s old pediatrician, he was admitted to the neurology floor with a diagnosis of Guillian Barre Syndrome. It made sense. He had ascending paralysis and protein in his spinal fluid. Three weeks in rehab and during that time Jordan completely lost his ability to walk. He also lost control over bladder function. We still didn’t question the professionals. Soon after he lost bladder control, we were released home to continue rehab. At this point Jordan was in a lot of pain but the “experts” told us Guillian Barre Syndrome isn’t painful so Jordan must be faking the pain to get out of therapy! Alan and I should have known better. Jordan had always had an incredibly high pain tolerance. He displaced his elbow when he was 3 – without crying. He had surgery to remove part of the bone in his arm and needed no pain meds after – and no crying. So now he’s crying and saying his hips hurt and we are told he’s “faking” and to just give him Tylenol.

Jordan’s diagnosis of spinal cord cancer came in March of 2009 after an MRI of the spine was finally performed. Surgery to hopefully remove the tumor was scheduled for the next day. It was too late for his mobility. He was permanently paralyzed from the waist down before he went into surgery. Fortunately, we had an incredibly compassionate and caring neurosurgeon who delivered the devastating news to us that our son had a tumor that could not be removed, only biopsied. Not only would Jordan never walk again, but he would be lucky to live a year. Most likely scenario would be that the tumor would continue to grow up his spine (it started in the lower lumbar region), and he would gradually experience more paralysis – and excruciating nerve pain as this occurred. So much for “just Tylenol”.

We were very fortunate in one sense though. We had a neurosurgeon and a neuro team who gave us the knowledge we needed to start advocating for the best care possible for our child. We were encouraged to search for second, third, even fourth opinions. Given the terminal nature of the disease it was gently stressed to us how important it would be to weigh quality of life against quantity.

I need to say that after those first couple months, after the real diagnosis, I have no regrets in the care Jordan was given and the advocacy our family did on his behalf. A lot of the credit for that goes to the incredible medical professionals that we encountered throughout what turned out to be a 3+ year journey. They helped us every step of the way in determining what was right for Jordan and what was right for our family. There were a couple professionals (doctors, therapists) who didn’t make the cut and needed to be “let go”, but just a couple and it was easy to cut them loose! They didn’t fit into our plan for what we felt was right for Jordan.

When it came to anything Jordan related we learned to trust our instincts, trust our gut, trust each other, trust God, and research, research, and more research. Jordan died peacefully and pain free at home on June 24th, 2012 with family and friends near his side. He lived and died on his own terms with help from a great team.

Always Jordan’s mom,

Danae

Signs

Uncategorized

One of the things I’ve learned on this mourning journey is that a lot of people believe that their deceased loved one can send them signs. I respect all views on this, but personally, I believe my son is in Heaven. I have come to believe that someone (David? God?) also has a way of putting little signs in our paths to give us some comfort. Today, we had a sign like that, and I’d like to share it with you.

We are on our first significant trip with Austin and Kinsley since David passed. I think we have all been quite aware of his absence, but we have been enjoying the trip to London and remembering him through stories. We went to lunch at the Hard Rock Cafe, which was something I’ve done many times with David and Austin. It was Kinsley’s first time at a Hard Rock Cafe, so that was special for us. We were talking about collecting and trading pins with a server who came to our table. She was not our main server; she just happened to bring the salads. She held out her pin lanyard, and I saw what looked like a chef pin. I asked her about it, and she said that it was a fundraiser pin that had only been available for employees to purchase. It was for a chef at the Hard Rock Cafe in Rome(!) who had cancer. My heart skipped a beat. In my 20+ years of collecting Hard Rock Cafe pins, I’ve never seen one with a chef on it. To see one that was created especially for a chef with cancer was overwhelming to me.

If you knew him, you probably know that David wanted to be a chef. He also dreamed of going to Italy to study. I told her about David, and couldn’t even get through the story without crying. She immediately took off the pin and gave it to me. I tried to get her to at least let me trade her for it, but she wouldn’t hear of it.

Image

This is me with Elan after I stopped crying. 😉

So she became the first person outside the US to have a Dragon Master Foundation wristband. And we spend the rest of the day feeling like David was with us in spirit on our trip.

 

52 People You Need to Meet: #2 Helena Curtis

Uncategorized

My husband, Ryan, was diagnosed with a Grade IV Glioblastoma Multiforme brain tumor in 2005 at the age of 29. My once very healthy and strong husband started having headaches that he couldn’t kick, then headaches with vomiting. Then one day, after working third shift as a Deputy Sheriff, he woke up on the floor of the bathroom and did not know why. We had been married for 5 years and had two daughters…our life was never the same. In an effort to convey even a small ounce of what this journey entailed for him, our girls and for myself, I am writing my letter to him…for everyone reading this.

To My Best Friend in Heaven, I wish I had known that you were going to be angry after your brain surgery. No one prepared me for how you would feel. The fear of the unknown and uncertainty of your future came out in angry words, and you had every right to be mad as hell. If someone had told me what to expect, I would never have taken it personally. I would have been better prepared to accept your anger and help you cope with it. Now, I carry my own anger.

I wish I had known that stacks of medical books and physician’s articles would never give me the knowledge and skills I needed the most for you. Medical terms, chemo side effects, and hoards of medication pamphlets never taught me how to care for you emotionally and mentally. It took time, patience, tears, hope, pain, practice and knowing you as well as I did, to try and ease the burden you carried within you that the cancer had not touched. All the hours of reading and research, provided no fool-proof answers, like simple love did. Now, I know I gave you the best love I knew how to give.

I wish I had known how to help you get your life back once your brain cancer was stable. For years you took combinations of chemotherapy and other drugs, in a constant fight and full of hope for beating your disease. Once the active fighting was done, you tried to move forward and struggled with a new normal. I didn’t see that then like I do now. No longer a police officer, you made so many attempts to build a new career for yourself. I did not realize then, how all those toxic “live saving” chemicals changed your thinking and the way you saw things. You were no longer fighting the cancer, but fighting to live like you had before it ravaged your veins. Now, I know what it is like to lose the life you had.

I wish I had known how quickly and swiftly our lives would change. It was only September, that we were told the cancer was growing again. Late May, we proudly watched our daughter graduate. Father’s Day, I fed you your favorite meal and warmed inside to see your crooked grin. Then the medicine stopped working and we had run out of options. In a matter of weeks, you went from fully functional and independent to bedridden and reliant upon others for your total care. You tried so hard to do what you could. Now, I know what it is like to live with unwanted change.

I wish I had known how raw and painful it is to watch the father of your children, your best friend, your companion, and your other half to lose his life. Humans were not meant to endure the death of their closest loved ones; I am convinced of this now. Out of all the doctors, counselors and nurses we entrusted your life to in almost 8 years, not a one of them told me of the intense misery that I would endure while watching you take your last breaths. I still see the entire process in my mind. I carry the helplessness of the Hospice staff in my chest. I hear every struggled sound. I feel your motionless hand in mine…slipping away for eternity. Your last moments here with me replay in my soul, unwelcome, erratic and without notice of arrival. Now, I know the pain of a shattered and irreparable heart.

I wish I had known how alone life would feel once you were gone. You were part of me and I was part of you. Each morning and evening, you were here with me. And now a part of life is gone. I have no way of figuring out how to be me, without you. Now I know what lonely really is. With all this I wish I had known before you were diagnosed with brain cancer, I realize that if I had known the road we would travel…I would choose to travel it all over again just to be with you once more.

Love Always, Me

Stuck in the Hospital

Uncategorized

Frequently cancer patients are stuck in the hospital. The hospitals usually do a reasonable job of taking care of the patient’s needs, but caregivers are not always so lucky. I have a friend visiting someone in the hospital today and she asked what to bring to the mom of the sick child.

It is always great if you can get them to tell you what they need. I usually said something like, “I am coming to the hospital today. I’m going to stop at the grocery store and Target on my way. I would love it if you would tell me what I could bring to you.” If they wouldn’t give me an answer, I would just pick out things that I thought might be useful. Off the top of my head, here are my suggestions:

Food and drinks were always appreciated. You’re stuck in the hospital with food that sucks and is expensive. Fruit is good, especially apples and stuff you can just eat without cutting up. Favorite tea or soda. Granola bars. Try to be sensitive to allergies, and it is good to buy organic fruit if you can. (A lot of cancer patients try to eat strictly organic.)

Extra fuzzy socks.

A blanket.

Magazines.

Lotion.

Breath mints.

She might want you to bring stuff from home (change of clothes, etc). Offer to bring stuff back with you.

Quarters for the vending machines.

Gift cards – especially gas or iTunes/Amazon so they can download soothing music, a game, a book, or a movie.

What would you suggest?

It’s Gonna be a Wild Ride

Uncategorized

I had no idea when I embarked on this blog project that it would be this moving. I had asked people I know to share their insights, and I thought I was prepared for what they had to say. I was not. I am so moved by the posts coming in. It is so amazing to me that so many people are willing to bare their souls in an attempt to help others.

About a year ago, I got a really nice message from a mother who thanked me for sharing what it was like have a child with brain cancer. I feel like I didn’t share much because of trying to protect my teen’s privacy, but somehow it still helped another family.

This #52blog project is going to help countless families. They are going to gain amazing insight to what it is like to deal with brain cancer. These are brave people sharing difficult stories. I hope you can understand what a blessing it is to put this out there into the world. I’m truly humbled that they are sacrificing this bit of themselves for the greater good. It’s going to be an amazing year.

52 People You Need to Meet: #1 Nikki Austin

52 People To Meet Posts

What I Wish I Knew Before my Son was Diagnosed with Cancer

My only son Matthew was diagnosed on September 7, 2012 with DIPG, an incurable, inoperable form of brain cancer.  He was 10 days shy of turning 10 when he was diagnosed.  He battled bravely for 14 months and passed away in my arms on November 5, 2013.

Although there is nothing I can do to change the events that have taken place, there are several things I wish I knew before Matthew was diagnosed.

I wish I knew how much our family was loved:  Before Matthew’s diagnosis, I knew that my family was liked.  We have a wonderful circle of friends and we live in a great community.  However, I could not comprehend how much we are LOVED until Matthew was diagnosed.  The generosity that we have received is beyond anything that I ever could have imagined.  It’s overwhelming, incomprehensible, humbling, and quite simply amazing.  Two months after his death, we are still reminded daily how much we are truly loved.

I wish I knew what this diagnosis would do to my relationships:  In my naïve mind, I thought something as major as your child being diagnosed with terminal cancer would somehow create a clean slate with the relationships in my life.  Previous issues would be erased and everything would start over fresh.  Everyone would realize as much as I had what really matters in life.  I was sadly naïve in this area.  Some relationships have been made stronger than ever.  My husband and I are closer than I ever thought we could be.  My friends and close family members have rallied around me and supported me in ways that I never even realized I needed.  They were my strength for 14 months and continue to be.  I’ve also learned that if the death of my son isn’t reason enough for some people to forgive, forget and move on, then I don’t know what is.  This journey has told me everything I need to know about the relationships I have with the people in my life.

I wish I knew not to take simple moments of life with my children for granted:  Of course I’ve loved my children since the day they were born.  But like any mother, I got frustrated, yelled when I shouldn’t have, probably said “no” more than I needed to and took for granted the time we had together.  Hearing the words “no cure, maybe a year if we’re lucky….” immediately changed that.  There is nothing like knowing your son is living on borrowed time to make you cherish every single moment together.  Someone once said “it’s like living life in High Definition.”  Every sunny day is more beautiful, every laugh is more musical, and every achievement is more remarkable.  I savored every breath he took, every word he spoke, every squeeze of his hand in mine as we’d walk, his smell, his voice, his everything.  It’s sad that it took an experience like this to make me realize how to cherish the everyday little moments I have with my children, but I’m grateful that I’ve at least learned to live in HD.

I wish I knew that karma is as make believe as unicorns:  I’ve had a good life.  Yes, I’ve had challenges, but I believe that these experiences have made me stronger and made me who I am.  I assumed that because we are good people who live a good life that the universe, God, Buddha, whoever, will take care of us.  I was wrong.  Bad things do indeed happen to really good people.  The theory of Karma- if one sows goodness, one will reap goodness- was blown apart the day Matthew was diagnosed.  What could my 9 year old son have done to deserve a cancer diagnosis?  What could we, his parents have done that was so awful to deserve this?  Is this a lesson?  Is God trying to teach us something?  These are answers I don’t have and don’t know that I ever will.  But I do know that the unthinkable CAN happen to us.  But the idea that karma is somehow at work- I’ll never believe that theory again.

Each Journey is Unique:  The day that Matthew was diagnosed, a neurosurgeon at Seattle Children’s told us “It’s important to remember that Matthew’s tumor is unique.  No one knows how it will behave, so don’t think that the statistics will dictate his journey.”  I wish I had known that just as Matthew’s journey was unique; my grief journey will be unique as well.  It’s a wonderful thing to be connected with amazing moms who have lost a child as well, but when you start comparing your journey to others, that can be harmful.  There have been times that I’ve felt that I’m not “sad enough” if I have a good day.  Deep down, I know that I love my son more than life itself and the amount of tears that I cry are not a measure of that love.  I’ve had to learn that I will grieve however I need to grieve and it will happen when I need it to happen.  Comparing myself to others only serves to make me feel that I’m not “doing it right.”   Had I known this early on, I think I would have saved myself a decent amount of guilt.

I wish I knew how strong I really am:  There have been too many moments to count that I’ve cried “I can’t do this….I don’t know how I’ll survive.”  Guess what, I’m doing it.  I’m surviving.  I took care of our son for 14 months better than any other person could have.  I comforted him when he was sick, scared, and in pain.  I kissed him goodbye every day for 6 weeks as he went into his radiation treatments and told him how brave he was.  I watched as poison dripped into his veins and told him how proud we were of him.  I told him about Heaven and Jesus and eternal life and eased his fears about death and leaving his mommy, daddy and sister behind.  And I held him in my arms and comforted him as he took his last breaths while telling him that it was ok, it was time for him to go.  So yes, I am strong.  I am so much stronger than I ever even imagined.  Fear will never hold me back.  If I am strong enough to live through these past 16 months, I am strong enough for anything.

As I read through this, I’m left wondering “What if I knew all these things before Matthew was diagnosed with cancer?  What would I have learned?”   I guess this is how it was meant to be.  Although it would have been helpful to know these things 16 months ago, these were the lessons I was meant to learn.

With Matthew in my Heart,

Nikki

http://www.mama2matthewandmegan.blogspot.com