*If you read nothing else today, please read this. And feel free to share! It’s long but important.
D.C. Overview:
I have taken some time to reflect and process everything we experienced in DC. I wanted to share my thoughts and feelings because they need to be shared. I learned so much, some things positive and some not so positive. All in all it was a good trip although it was more emotionally and physically exhausting that I had expected. I gained a lot of insight about how our government works. I also realized how complicated much of the processes are and how time consuming change can be. Honestly it was all very overwhelming. The first thing I noticed was the beauty of DC. It is a bustling town full of history, beautiful architecture and full of learning opportunities like no other. Bring your most comfortable shoes because you will be doing tons of walking. I am exited to visit again and to tour/sightsee some more. I only regret that I haven’t experienced DC before now.
The first day with the Alliance for Childhood Cancer was very interesting. We met new friends from GA and all over the country. We immediately bonded upon sharing our stories and experiences both good and bad with childhood cancer. The Alliance includes groups of parents, children, lobbyists and other childhood cancer advocates from all over the nation. Over 280 people from 35 states met with the Senators and Representatives from their state. We all shared personal stories and plead for new and continued legislation that benefits the world of childhood cancer.
The current Director of the NCI (Nation Cancer Institute), Dr. Sharpless, was a featured speaker at this event. He is soon to be leaving this position. If you don’t already know what the NCI is then here is a brief definition:
The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of eleven agencies that are part of the U.S. Department of Health and Human Services. The NCI coordinates the United States National Cancer Program and conducts and supports research, training, health information dissemination, and other activities related to the causes, prevention, diagnosis, and treatment of cancer; the supportive care of cancer patients and their families; and cancer survivorship.”
Basically the NCI is THE government funded agency for all cancers-adult and pediatric. It’s budget fluctuates but it is many billions of dollars a year. You have most likely heard from many childhood cancer advocates that the NCI only uses <4 1.="" 10="" 2.="" 3.="" 4.="" 5.="" a="" about="" accurate.="" adult="" against="" agree="" all="" allowing="" alone="" also="" always="" amount="" and="" any="" anything="" anywhere="" approve="" approved.="" approved="" are="" arer="" argue="" around="" as="" at="" available="" be.="" be="" because="" being="" better="" budget="" but="" can="" cancer.="" cancer="" cancers="" cases.="" cases="" chance="" change.="" child.="" child="" childhood="" children.="" children="" companies="" compared="" completely="" congress="" control="" controls="" controversial.="" controversial="" country="" current="" delve="" depending="" depends="" determine="" determined="" diagnosis="" did.="" die="" does="" don="" dr.="" drug="" drugs="" during="" each="" enough="" equal="" esting="" even="" experimenting="" families="" far="" few="" fewer="" for="" from="" funding="" game.="" get="" gets="" given="" going="" granted.="" grants.="" grants="" happening.="" has="" have="" how="" i="" if="" impression="" in="" is="" isn="" it="" just="" learned="" less="" like="" little="" lot="" low="" made="" make="" many="" may="" me.="" might="" money="" mostly="" much="" nbsp="" nci="" new="" news="" nice="" no="" not="" number="" numbers="" of="" often="" on="" options="" or="" our="" out="" over="" parents="" pediatric="" percentages="" possible="" priority="" profit="" reason="" reasoning="" reasons="" requesting="" requests="" research="" researchers="" run="" s.="" s="" save="" sharpless="" shocking="" should="" so="" span="" spent.="" support.="" support="" t="" take="" testing.="" testing="" that="" the="" their="" themselves="" there="" therefore="" they="" this="" though="" time="" timing.="" to="" told="" topic="" treatment.="" treatment="" trial="" try="" under="" us="" use="" used.="" voice.="" voice="" vote.="" vote="" voted="" want="" was="" waste="" we="" what="" when="" why="" will="" won="" would="" wrong.="" year="">
On a positive note awareness is improving, slowly. Doctors and researchers are finally beginning to accept that childhood cancers and adult cancers are totally separate entities. They are biologically and genetically different. They require different types of care and treatments.
Most children are born with cancer or predestined to get it, while most adult cancers have an environmental cause or are caused by lifestyle choices. Most children are diagnosed after the cancer has significantly spread while most adults are first diagnosed in the early stages.
So where do we go from here? That is the frustrating part, I’m not sure. I have a few ideas but I have to think some more on this topic. I believe as a start we need to begin by contacting and advocating directly with the NCI. Thanks to social media we can easily do this. I personally believe that until childhood cancer affects an authority higher up with some control over research and dollars not much more will be done. A person with power will need to know how it feels to run out of options or nothing much may change and new and better treatment discoveries will continue to happen too slowly. The reality is that most people are just unaware of the need or don’t care about a cause until it affects them personally. That is human nature. I believe WE need to keep making our voices heard, keep fighting, keep advocating and sharing TRUE facts until the right person “hears” us.
We need to change the perspective in this country from $ and numbers to number of years lost. Adult cancer has been given priority and funding for many years. We can always improve and adult research needs to continue but children have been given so little it is absolutely sinful. Most adults have lived a large portion of their lives at their time of diagnosis while the children who die have an average of 60+ years lost. Every human deserves a cure but it is time to make children a national priority. The fact is cancer is the leading cause of death by disease in our children in the U.S. That alone makes it not rare. The rates are increasing, not decreasing and we don’t know why. All life is precious and should be treated as so. Research for children and cures are mainly depended on independent funding from outside sources such as our small “United for a Cure” Fund.
Day 2 in DC we went to Capital Hill to share our emotional stories, ask our legislators to support new bills and to keep supporting the current bills benefiting childhood cancer research. This was much harder than I had anticipated. I believe because it was an experience I’d never had which is always terrifying. It was very intimidating and in an intimate setting. Plus I am obviously passionate about this topic so emotions are high. Mostly we met with young (20 something) staffers and shared our stories which they will relay back to their bosses. We were able to personally meet face to face with Senator David Perdue and Representative Austin Scott. The good news is everyone we talked to pretty much already supported our efforts and seemed to truly care. They asked questions and wanted information on bills they didn’t understand. I’m not sure if it was this way for everyone but for us that felt very positive. I felt good about our discussions and the support of our law makers. I talk about Mary and share her story often but for whatever reason this time it was extra difficult for me. I hysterically cried in the first two meetings. So much so I wasn’t able to really get out the words I wanted to speak and I questioned if I would be able to continue with the day. I was lucky to have my dear father, Joe Posey, with me to give me strength. He is an adult cancer survivor, currently battling secondary cancer and knows how losing a grandchild feels so he has a very unique perspective. It was equally painful for him to share and it was hard watching him hurt and hold back tears. I was honestly shocked with my own unexpected behavior. I pride myself on being strong and in control. At that moment I was clearly unable to get a grip on my emotions. But I am happy to say it did get easier as the day progressed. I was able to have better emotional stability as the day continued. Another important thing I learned was this...I believe few of us who have gone through the loss of a child to cancer continue to advocate like we do. Or at least that is how it seemed to me. I get why. It’s emotionally draining to remember the pain and to have to relive it over and over again. I have no judgments. How everyone handles loss is an individual process. Maybe the grief is too overwhelming for most (I 100% get that). And/or maybe the parents feel it is too late to save their children so they think, “Why bother doing anything at all? “ Grief can leave you feeling bitter and hopeless for a long time, even on your best days. People often ask me why I do what I do and how I am able to keep fundraising and advocating after such a loss. I think I can also speak for my friend Anna Bozman Thompson (Lake’s Mom) as well when I give my answer. We truly don’t want anyone else to have to lose a child the way we did or to experience the pain we have felt it they don’t have to. It’s literally unimaginable and most days I can barely accept it as my reality. If what we do saves any child and/or makes the journey a little easier for someone else then it is worth it. There are children still living who need and deserve better and many children newly diagnosed everyday who need and deserve a cure. The other part of my answer is that it has to be a supernatural power given to us by our angels. Finding a cure is what they wanted and what they passionately believed in. I remember vividly feeling trapped in the hospital day after day, watching the clock slowly tic away, wishing we were free and able to do something/anything to make childhood cancer a priority. Mary and I spent countless hours talking about fundraising and how we would bring about change. I was eventually able to leave that hospital...Mary never did. The burden then fell on me to complete the mission for her. I have no doubt she is walking right beside me and sometimes carrying me along the way. Anna had to hear Lake ask her if he was going to die. She said what needed to be said and remained positive but she will never forget seeing in his eyes that he just “knew”. Lake knew in his heart that he wouldn’t survive this relentless disease. Mary asked me the same thing. I remember not really knowing how to best answer her. I also didn’t want to be dishonest so my answer went something like this, “All I know is that we are going to do everything in our power to not let that (dying) happen.” I believe we kept our end of the bargain. We tried literally everything that was available to us. We never gave up hope until Mary took her last breath. I remember telling myself “If she is still alive then we still have a chance”. That was a lie I told myself, in all honesty she never had a chance. The problem was there weren’t enough options available and there never has been. We ALL let her down. Her parents, her family, her community, her nurses, her doctors, researchers and our nation failed Mary. No parent should ever have to tell their child they might die. No parent should have to realize there are no more options available to save their child’s life. Our greatest wish was to have the power to trade places, but even that was not an option. At the end of our one and only conversation about death Mary said, “Well mom, if I have to die so that others can live then I am ok with it. So many of my good friends are already in Heaven anyway.” I remember hearing this and fighting back tears so I wouldn’t look weak and cry in front of Mary. I told her, “Well I’m not okay with it. Let’s just stay positive.” I’ll never forget that day as long as I live. This was one conversation no one can ever be prepared for. I now believe Mary was right. If she had lived I have no idea how we would be functioning in this cause. Maybe we would have tried to give her as normal life as possible. Maybe we would not be as involved in the childhood cancer world because it is too painful and sad. Her life had a much bigger purpose. She has done so much more in death than she ever could have in life. She shared the real, the raw and the ugly truth of childhood cancer. Thousands followed her story and she taught them what true love and humility was all about. She was good and kind and sweet and humble and faithful and she still died. It didn’t make sense and it wasn’t fair but life isn’t fair. Her death is proof of that. Because of Mary’s story many people realized too many children die from this horrific disease and how devastating it really is. We can be bitter and angry but nothing will bring her back. She showed us what childhood cancer is all about: nondiscriminatory, painful suffering and that it is just plain evil. Childhood cancer isn’t cute smiling bald heads with a 95% cure rate. It’s not even close. Cancer destroys lives and families. Mary wants me to tell the truth. She wants people to know that many kids are still dying everyday. The treatments are brutal and often leave surviving patients with life long chronic conditions. It shortens their life and can create a lot of emotional turmoil and chaos. Children should not be treated in the same way as adults. They need 100’s of drugs available to them, not only a handful created specifically for children. They need better research that has advanced and not become stagnant over the last 30/40 yrs. They need less invasive and damaging treatments. They need targeted therapies. They need a fighting chance. Cancer research funding should be divided 50/50 for children and adults. That would be fair and right. I will keep speaking up and speaking the truth until my dying day. Hospitals need to quit skewing survivor stats for their advantage. A survivor is considered any person who is still alive after 5 yrs of diagnosis. This makes no sense at all. Many kids are still in treatment after 5 yrs. Many still have cancer and many die after 5 yrs and one day. Many die a few years later from the complications of treatment. Some get secondary cancers from the treatments. Their death certificate won’t say “cause of death-cancer”. It might say “Cause of death-liver failure, heart failure, pneumonia, etc. “ THIS IS NOT SURVIVING.
As long as there is an ear that is willing to hear the truth and willing to become aware I will be the voice for Mary and every other child suffering from cancer.
Our dear friend Robert is considered cured because he has been in treatment and surviving after 7 yrs! He has battled cancer over half of his short life. He has missed out on fun, important events, milestones, school and the ability to just enjoy being a kid. His family was recently told the cancer is back with a vengeance and there are no more options. Zero. His family can now only pray and hope for a miracle. I’ve been in their shoes and I know exactly how helpless this feeling can be. He was originally diagnosed with ALL and given a good prognosis. His family was told Robert had the “good kind of cancer.” If you hear nothing else please hear that there is no good kind of cancer. I want to help them but I feel helpless. We haven’t done enough. Not even close to enough. The evidence of our failure is right in front of our faces and in the face of sweet Robert and so many others. This message I am sharing is the TRUTH. I ask you to read this message, share this message, be willing to do more, write the NCI and your legislatures and tell anyone who will listen this TRUTH. Be a loud resounding voice for our kids. “Fight with M.E.”
I thank you and Mary thanks you.
*Be Brave
