Childhood Cancer Symposium
Alex’s Lemonade – Stand Foundation
~ There is not one person in this room today that has not heard the word cancer. You may even know someone with cancer whether it be an acquaintance, your best friend, your aunt, your uncle, your cousin, your nephew or niece, your brother, your sister, or your parent. You may even have cancer yourself. It is not surprising that so many people are affected by this horrific illness, for there are so many types of cancer: blood cancer, bone cancer, breast cancer, brain cancer, cancer…cancer, cancer, …It is a powerful word, and it is a scary word. But when this word is the most frightening and profound is when you are the parent of a precious child who has just been diagnosed with CANCER!
At first there is always the shock factor, and then the denial stage or even angry emotional outbursts. The blame and guilt phase can emerge, or depression can hit without your consent when you just want to pull the covers up over your head and pretend it is not there. But what often remains is constant FEAR—fear that your child will not survive, fear that your child will suffer, fear that medications or procedures may have lingering side effects, fear that emotional scars could be permanent. Fear that as a parent we may have failed, failed to protect our child, failed to have given our child a “normal” childhood, failed to make the pain go away. As parents, we feel we may have failed at making the pixie dust capable of vanishing this cancer nightmare.
But here is something you may not have thought about. Fear is not all bad. It actually protects us—it is an early warning signal that tells us when not to do something risky or dangerous. But there is a big difference between the healthy fear that tells us, for example, to step back from the edge of a cliff and the constant fear that can keep us from living our lives. If we get stuck in this constant fear, we’ll never be able to help our child, our family, or ourselves.
Why is it that some people can seem to overcome what may seem like insurmountable obstacles—while others struggle, grow weary and may even give up? I believe it is a choice. A choice to tackle fear head on. Tragedies can be just that…tragedies over which we often have no control. But these tragedies, these so-called obstacles, can also wake us up to what is really important and to the meaning of time…Making sure to live and be grateful for each moment and every person who is important in our lives, whether sick or healthy.
It is a choice to see the positives amidst the negatives. It is a choice to move forward to help our children and families to cope to whatever degree possible. It is a choice to wake up each day and to put one foot in front of the other, to advocate for your child, to educate yourself about the illness, to work productively with the medical profession, to try to keep a line of communication between you and your significant other, your family and your friends…It is a choice to continue to love, no matter the circumstances. Dwelling only on fear, the cancer or medical information doesn’t take into account that there ARE success stories, that miracles DO happen, and that people CAN prevail through the Unthinkable!
My name is Dixie Coskie, and I am the mother of eight beautiful children. My days are hectic, just like yours; they consist of driving kids around, doing laundry, attempting to keep up with daily chores while also working outside the home, trying to keep a marriage together, and trying to sneak in a little time for myself. Take note though, I did not say cooking…I do not enjoy cooking very much, and I’m not very good at it. My kids know when I’ve turned the oven on, because it usually coincides with the smoke alarm… So my husband does a lot of the cooking, or if you prefer chicken nuggets, French fries, or HotPockets for dinner, I’m your woman!
September 6th, 2001, … started out just like any other hectic day. The two months of having kids constantly underfoot during summer vacation were finally over, and I savored a moment and day for myself while my children were back at school for the year. I had attempted a moment of reprieve by reading a mystery novel in the morning and then catching up with chores in the afternoon. I was just about to put that frozen pizza in the oven for dinner when the phone started ringing… and what I heard from the other end of the line were words that every parent fears… My thirteen-year old son, Paul, had just been struck by a car while riding his bike, not even two minutes from our home. He had not been wearing a bike helmet. He suffered numerous injuries, including severe trauma to his brain. Suddenly, our family was dealing with a life-and-death situation. The world of medicine and hospitals and intensive care was all very foreign to us. In a word, we were terrified. We waited and prayed constantly at our son’s bedside asking ourselves would he survive? And even worse, all the while we questioned what would happen if he did. What would his limitations be? Would he be permanently handicapped? Would he have any quality of life?… As I look around here today, I’d be willing to bet that every one of you remembers where you were on 9/11…well, I was in an intensive care unit fighting for our son’s life as our lives had been changed forever not just by the Twin Towers crashing to the ground, but by traumatic brain injury.
We kept a month-long vigil in the intensive care unit where Paul lay in a coma while doctors and nurses worked frantically to keep him alive. When Paul’s eyes finally did open, he could not process information. He could not move his body. He could not speak. He didn’t even know who I was. I worried that he never would. So I secretly began to write to Paul every day in a journal where I told him my most intimate emotions, my fears, my hopes, and most importantly his progress however incremental; so that if he ever did fully wake up, he would know what had transpired, what had happened to him. It started out as a way to communicate with Paul while he lay motionless, unaware of what had happened to him, to me, to our family, to our world.
After weeks of uncertainty, once Paul stabilized, he left the intensive care unit and went to a rehabilitation hospital an hour from our home. He struggled relentlessly for the next 6 months to perform the most basics of tasks again… like things we all take for granted…tying our shoes, picking up a fork, typing on the computer, uttering a word…and it took years of out-patient therapies and his own determination and will power for him to graduate from a wheel chair, to a walker, and then taking steps once deemed impossible by doctors, eventually taking steps to the podium to receive his high school diploma. * (Possible 4 min. video here) Paul IS remarkable and it’s easy to see that the course of his life was changed, but what often gets overlooked during the immediate chaos of a catastrophic injury or illness and the extended recovery process is how it changes every member of a family.
Suddenly our marriage, our jobs, and our family life was put on hold—everything we knew, everything that was familiar and routine and comforting, was gone. No matter how hard my husband and I tried to not be completely preoccupied with Paul and his circumstances, I know that at times our other seven children felt isolated or resentful. They may have felt abandoned, unloved—or even rejected. So on top of taking care of Paul and all his needs, we had to deal with our other children’s emotions, worries, and heartache as they tried to accept the realization first, that recovery from a traumatic brain injury could be a lifelong process, and second, that the brother they once knew might possibly never be returned to them.
I wished I could have shielded the burden, the emotional suffering, and the ripple effects that traumatic brain injury inflicted on all of my children, but I couldn’t. …Suddenly my children were thrown into a world of adult issues and adult stresses. My then 16-year-old daughter Amanda appeared depressed, crying without warning; she was unable to concentrate on her schoolwork and alienated herself from peers. My 15-year-old daughter Brianna became quiet and fearful about everything—she starting having anxiety attacks. My 12-year-old daughter Caroline needed to be in control of something—and stopped eating. My 9-year-old daughter Anna-Theresa was scared, not wanting to go to school or even to leave my side, her stomach always hurting. My 7-year-old son complained about being the only boy in the house; demanding to be heard, he started acting out. My youngest at the time, my 6-year-old little girl, Monica spent most of her days crying in the school nurse’s office, missing any sense of family and daily normalcy.
As many of you know, nothing is ever normal after the diagnoses of a life-threatening illness or injury. Time stops and starts again in a different realm…My husband and I often felt as though we were walking on eggshells, trying to help our sick child and desperately trying to help our other 7 children, to keep our family moving forward with some sort of a “new” normal…we sought out resources to help us, and positive people to guide us and tried to whatever degree we could to keep our fears and doubts at bay, by trying to become more aware of the meaning of time… because we should all live and be grateful for each moment and every person in our lives whether sick or healthy… In reality it is very hard to stay positive amidst all the negatives and especially… when our family was blindsided… four years after Paul’s brain injury… when he was still struggling from lingering deficits and repercussions from the crash. Our family was literally just beginning to get back on our feet, when we learned our struggles were far from over. And it wasn’t just the brain injury and dealing with the everyday ups and downs of parenting our children who were 6 to 16 at the time… We were completely caught off guard when suddenly, without warning, Paul had a new diagnosis, which would impact each and every one of us…. CANCER. Yes, cancer. That dreaded word that we all have heard of. Within seconds, we became the parents of a child with not just a traumatic brain injury…but a child who also had cancer— chronic myelogenous leukemia, called CML.
How could this be? We couldn’t begin to comprehend how two traumatic, horrific, unbelievable, unrelated circumstances could happen to one child, one family. Never, ever, ever could we have imagined that our son was now sick with a life-threatening disease present in every drop of his blood, circulating throughout all the vessels and cells in his body. We could not possibly grasp that our son’s life was in danger, again. Cancer is a powerful word, and it is a scary word. But when this word is the most frightening and profound is when you are the parent of a precious child who has just been diagnosed with CANCER! Fear, grief, helplessness, and hopelessness surfaced. Once again, we wanted to pull the covers up over our heads and pretend the cancer was not there.… But somehow with time and educating ourselves about CML, as we had done previously for traumatic brain injury, we summoned up enough strength to choose to tackle our fears head-on and to once again HOPE. We hoped that one of our children would be a positive match for a bone-marrow transplant—Paul’s only chance for survival. We chose to hope… to not allow ourselves to get stuck in constant fear. Because if we did, we knew we would never be able to help our child, our family, or ourselves. We needed to wake up to what is really important and to the meaning of time…We made sure to remember to live and be grateful for each moment and every person who is important in our lives, whether sick or healthy. We chose to love, no matter the circumstances.
But what we didn’t know at the time was that our son Paul was fearful, tired, and didn’t want the bone marrow transplant…He had already fought a huge battle struggling to learn how to walk and talk again and didn’t want to fight anymore. He didn’t want to try to seek out the positives amidst the negatives. Paul was soon turning 18 and would ultimately be able to make medical decisions for himself as an adult …whether or not to have the bone marrow transplant… to either take the risk at possible survival or to just give up… There was a time when Paul wanted to give up. Despite how far he’d come and his natural tendency to be on the stubborn side, he still had lost hope. But there is definitely a genetic component to his stubbornness, and my husband and I were unwilling to accept his decision. We faced the fear together and continued to push forward.
Until you or a family member or someone you love is personally battling with life and death due to cancer, you may not be able to fully understand the magnitude of the illness and how it can affect your loved one, you or your family… emotionally, physically, financially, and spiritually. How the doctor’s appointments, transfusions, blood counts, surgeries, X-rays, and procedures literally take over your days, while putting your other life—your “normal” life—on hold. My son’s life has been on hold for what seems to be an eternity since his traumatic brain injury in 2001 and then his diagnoses of cancer in 2005… But thankfully and remarkably, Paul choosing to overcome his fears and to move forward and fight through treatments with trial drugs, and alternative methods like music therapy, acupuncture and reakie, and our hero, our 11-year-old son at the time, Kevin, being a positive match for the bone marrow transplant… Paul was now willing to persevere with determination. He chose to fight through his fears head on… Yet, we all were also not naive and knew that there would be more lengthy hospital stays, more isolation, more potential complications, and more caregiving and caregiving and caregiving.
But this time, we knew a little bit more. Not about cancer, but having already gone through one catastrophic medical experience, we knew we needed to take more care of ourselves in order to be able to take care of Paul and the rest of our family. We sought out positive people for support. We took breaks from the hospital to exercise, meditate, or just have a moment to ourselves. We realized that asking for help was not a weakness. When friends asked what they could do, we let them know we needed help with chores like shopping, carpooling, and meal preparation. We rid ourselves of guilt and acknowledged our strengths. We educated ourselves on the diagnoses. We chose to see the positives amidst the negatives, to move forward to help our children cope to whatever degree possible. We chose to wake up each day and to put one foot in front of the other, to advocate for our sick child, to work productively with the medical profession, to try to keep a line of communication between each other, family and friends —- Communicating through hardships takes work, as probably all of you well know…because each person deals and tries to cope in their own way… I tended to see things in a more pessimistic light then my husband … It was frustrating and almost infuriating at times to not share his optimistic outlook, and I know at times he did not want to hear my fears, complaints, or emotional outbursts… My husband has always been more quiet than I am, not as sociable and tending to keep things inside… Yup a typical guy! So what worked for us was that I was usually the one seeking out supports and resources and then sharing the information with him. He was really good at deciphering the information and seeing it from his positive perspective, which ultimately helped to encourage me when I was feeling at times despair and desperation.
… We somehow balanced each other out by continuing to talk, sharing thoughts, feelings and our different perspectives. We chose to continue to love, no matter the circumstances…
Dwelling only on the fear, cancer or medical information doesn’t take into account that there ARE success stories, that miracles DO happen, and that people CAN prevail through the Unthinkable! …Those of us who have had a brush with death, or catastrophic injury or illness realize more deeply how fleeting life is. Cancer can startle us from our slumber, to awaken to a life that is fragile, a gift, and worth living. Through the spectacular and the horrific. Realizing more that each person is special, that everyone has meaning and a purpose.
Although I don’t know any of you personally, I do know this. Up to this point, you have pushed through, too. Regardless of the strength and will it has taken to do so, you have not given up. And the even more amazing thing I know is that you are now taking an active role in creating a different future than you have experienced in the past. You are doing that by being here today. The only way to create something different from what you have already experienced is to add new information, new tools, and new resources to your life.
And helping us do that are Liz and Jay Scott for their insight in creating this event, bringing us all together for a supportive and informative day, for giving us an opportunity to learn more about cancer issues and topics of treatment and beyond, while being surrounded by like-minded people. It’s wonderful to be here, a part of Alex’s inspiring legacy. The Lemonade Stand Foundation – fighting childhood cancer one cup at a time! There is such a need for cancer research, funding, and… organizations and people who support this amazing cause ARE making a difference in the battle against childhood cancer.
For those of you who are not parents of a child with cancer in the audience who want to help and support those they love…consider donating blood, hair, or platelets. Think about registering to become an organ or bone marrow donor, or think about contributing to The Lemonade Stand Foundation! And, always try to keep hope alive and to love unconditionally.
Like me, many of you may still be having difficulty managing the everyday realities of being the parent of a child with cancer. And that’s normal because it is extremely difficult. And it is okay to break down when needed. Often people ask me, How do you do it, how have you survived through your child’s brain injury and now the cancer? And my simple answer is this…we are not extraordinary… The secret is… that everyone, everyone has the power to not give up, to not give up on God, to not give up on each other, to not give up on our world. Try to never take anyone for granted. Tell those you love that you love them… and tell them often. Get rid of guilt. Be realistic about what you can and cannot do. Pace yourself. Ask for help because as you know, caregiving is exhausting, and you will burn out if you do not take time to nurture yourself, your marriage and to spend time with your other children away from the stresses of taking care of a sick child. Realize you have been through a catastrophic hardship and you, too, have to heal and come to terms with the aftermath. You too have been isolated in the emergency room, the trauma center, the ICU, the cancer wards, the rehabilitation hospital, the outpatient therapies, and the transfusions and procedures, and now possibly home dealing with what may come next. Be kind to yourself: Allow yourself to start living again, go out to lunch, read a book, watch a movie or some football, get a massage or play racquetball, get your hair done, or just take a walk along the beach… Writing was what helped me to survive and heal, and it is vital for you to find what works for you.
Know that you and your family’s collective caregiving and unconditional love make all of you silent heroes. If your child was able to comprehend all that you have done and are still doing for him or her, you would receive a huge thank you at the end of every day. And with each new day, try to remember to nurture your mind, body, and soul. And when you can… possibly pray or just take time to be. Through our experiences, through traumatic brain injury and cancer… I have come to appreciate that death is not the worst thing that could happen…because it is reality that ultimately death is inevitable, …. Perhaps though… the ultimate loss would be…to lose our souls while still living….to be living in fear… to have given up!
At some point, maybe even years down the road…. when you have the strength…when you realize that you did not give up and you did try to see the positives amidst the negatives, that possibly you too could think about how you could give back… like Alex did and her family are doing now, and how they help and support others who may just be beginning this scary, profound, unthinkable journey called cancer, cancer, cancer. …Every one of us has the power to choose to tackle fear head on and to make a difference.
Writing in my journal at the beginning of our journey became extremely therapeutic for me. Years later when I was strong enough and able to re-read my words and all we had survived, I realized if I could write a book it could help other parents who suddenly found themselves thrown into a catastrophic situation— Because when my phone rang on September 6th, 2001, in the middle of the afternoon, I had no idea that my world would be changed forever. I had no idea of the challenges that lay ahead. There was no manual or tool to help us ultimately to cope and survive. And, although my son experienced a traumatic brain injury, my goal through writing my books is to help other parents who have experienced situations that are similar—such as being told that their newborn child has a serious birth defect, or their child has been severely injured or has been diagnosed with a life-threatening disease. I eventually wrote to give these parents some sort of guide, something to help them through their despair and grief, something for them to know that they are not alone—that others have had to face and have coped and survived through their fears and what may seem like insurmountable obstacles. I wrote to share my perspective and knowledge—what I learned during the days, weeks, and months after my son’s injury. You may be asking yourself how in God’s name has she had time to write 2 books with eight kids and all the parenting that involves, let alone having a child who suffered a massive brain injury and cancer? Well, I can tell you that it has been a passion, a mission and, again, it was a choice I made to create and to bring my books to life. The title of my books are — Unthinkable: A Mother’s Tragedy, Terror and Triumph through a Childs Traumatic Brain Injury and my second book Unthinkable: Tips for Surviving a Child’s Traumatic Brain Injury. My next book, a possible sequel, which I feel compelled to eventually write might be called, Cancer, it is a powerful word, and it is a scary word. But when this word is the most frightening and profound is when you are the parent of a precious child who has just been diagnosed with CANCER! It can also be a word that also wakes us up to what is really important and to the meaning of time…Making sure to live and be grateful for each moment and every person who is important in our lives, whether sick or healthy. How YOU chose to react is the only thing that is in your power.
As far as my family goes… my son Paul has chosen to keep a sense of humor throughout …. Throughout the traumatic brain injury and recovery and through the months of isolation on the cancer ward during bone marrow transplant and years at home enduring transfusions, fevers and trying to avoid germs and the cancer coming back. And then getting the dreaded graft-host disease where Paul also endured mouth sores, itchiness, nausea and etc, etc, etc…. But Like you… we never stopped advocating, we never stopped fighting, and we have never stopped loving.
Yes, it’s been very, very hard for Paul — for all of us — as it is for you. But today, years later, my entire family now goes about living with a new perspective—knowing that a veil has been lifted from our eyes and our hearts. Life is more real. Beautiful. Terrifying, moving both quickly and slowly, grasping moments more fiercely, intently, selfishly. Bypassing fear at times… and going on with hope, a sense of humor and love, despite knowing both the calm and the possible insanity. Counting the stars in the sky, and the cells in one tiny drop of blood. And we wait. Wait for Paul to live… as he is now in remission.
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By Dixie Coskie