I told myself this month I’d blog about our nearly seven year journey and share our reality, revisiting all that we’ve done and seen. I’ve put off writing for weeks and I have come to realize its just too hard for me to do today. Like Cole recently said when I asked if he’d want to speak publicly about his experience, “Not yet.” I will re-tell the whole story someday (and its there all there in the journal as we lived it), but not yet. I work hard to stay optimistic and hopeful, especially when I write about our individual experience, even if I don’t always succeed. So many others are telling their tragic stories, because childhood cancer IS tragic. But our story isn’t ALL tragic. And it isn’t over. There are so many feelings that go along with that when I read the tragic stories that surround us – guilt, anxiety, gratitude, fear, sadness. I hope you will read about little Donna or watch Zach Sobiech’s story, or fall in love with TALIA and be inspired by her legacy. I hope you will watch and SHARE the Emmy-winning documentary TheTRUTH365. I hope sharing just a little of our story will encourage you to share your awareness, get involved and take action against childhood cancer ALL YEAR LONG.
I know I’ve been invading your life with ‘THE CANCER STUFF’ for a month.
Think about what you have done in the last 3 years? We’ve been doing cancer. By the grace of God, not JUST cancer. But cancer is always there. 16 trips to Texas, numerous scans, major surgery, multiple medications, clinical trials… Awareness is our constant companion. And we’re the lucky ones.
So while Childhood Cancer Awareness Month is coming to an end, it is a reality that Cole and I will continue to live. And my barage of posts may no longer be in your face, but we will still face this every minute of every day. My son, who more than anything just wants to be a “normal” teenager, will still have to take medicines, and endure scans, sticks, and medical procedures to earn every tomorrow. He will have to miss school and sports for appointments and trips just to try to stay healthy enough to do the things he loves. We will watch many more families be thrust into this reality. So many sick children. We will watch many of them suffer and some of them die, and their families and communities grieve. We will remain sometimes painfully aware of childhood cancer. Because this is our life.
“We had to learn… that it did not really matter what we expected from life but rather what life expected of us.” Dr. Viktor Frankl
At one point I naively believed our cancer story was over. After a successful surgery in NY removed 100% of Cole’s extensive abdominal tumors, he finished subsequent chemotherapy and full abdominal radiation. He was cancer free! There were no guarantees it would not recur, in fact, it almost always did. But there were no other therapies proven to work either, and many could cause more damage than potential good. Cole returned to school, I to work. We went on with LIFE. We would scan every three months to look for it. I would cope with the stress (SCANXIETY) by mentally preparing myself for the range of possible outcomes, including the possibility of the scan showing recurrence. After two years of scanning every three months the doctor decided it was safe to wait 6 months between scans. That first six months was long, and again I was mentally prepared for the worst. But again, the scan showed no evidence of disease. Three years had past since his surgery, and I started to believe my own hopeful mantra that we had won. Life had become a “new” normal. And so when we went for that next 6 month scan, I allowed myself the luxury of believing it would be clear. And just like it had on October 30, 2006, on September 28, 2010 the rug was pulled out from beneath my feet again.
“Security is mostly superstition… Life is either a daring adventure, or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.” Helen Keller
I quickly realized this would be an entirely different beast. Relapse is a different experience in so many ways, starting with the way we found out. The first time I was told my son had cancer, he was playing a game in the hospital room with a volunteer and my mother, somewhat oblivious to his mother sobbing out in the hall. In 2010, when they called to give me the scan results I heard, “The doctor wants to meet with you tomorrow, just you.” Instantly I knew what that meant, but I didn’t want to tell anyone, including Cole, until I had the details. The following day I met the oncologist and I learned there were two small tumors, one in the original tumor site in his lower pelvis and one in his liver. He had recurrent metastatic disease.
What is the right way to tell your child they have cancer again? I don’t have a damn clue! What I do know is that I picked my bright, happy 9 year old boy up from school the following day, and we went to our favorite local ice cream shop. We sat outside at a table and after I’d asked him about his day, I calmly told him, the scan showed the cancer is back. Just like that. And he didn’t immediately begin to sob or get up and run. He started to cry a little, mostly because I was crying. He wanted to know what it meant, what would happen. He hardly remembered the treatments he received when he was only 6, just that he spent time at the hospital, some yucky stuff, but lots of attention and fun things. This time he understood that cancer was a disease that people died from. And at 9 years old, he was more aware of what he was going to be asked to endure and aware of his own mortality. That’s something that still breaks my heart to think about. How in one sentence, I stole his innocence, his childhood that he’d fought so hard to have. I had promised him all that he did would make him better. And now he had to do it again. It was unfair. Life is UNFAIR.
I don’t know if it’s his unshakeable optimism, his sheer determination, or what, but Cole didn’t let the news of his recurrence break his spirit. He trusted that I had taken care of him before and that I would again. He knew he would have to do unpleasant things, but he wanted to live. Cole loves LIFE. Even if he had to fight for it. Even if LIFE made him earn it. I couldn’t promise him it would be easy, but I promised him I’d do everything I could to make it worth it. That I would fight for him as hard as I asked him to fight, maybe harder. And if he was done fighting, he would be able to decide that to. Three years later, that statement is still unacceptable to him. Cole is still playing to win.
“Life is not always a matter of holding good cards, but sometimes, playing a poor hand well.” – Jack London
When Cole first faced cancer the worst part was the thought of him being miserable and tortured by medical procedures. When first admitted on the oncology floor I saw pale, gaunt children riding in wagons with blank expressions, and they looked as if life had already left them. I could not bear the thought of that happening to my Cole. Cole was so happy and full of life. The thought of him losing that bright smile was too much for me to bear. I honestly was just not strong enough to do that to my boy. So somewhat selfishly, I taught him a positive attitude, to find the good in everything, to stay hopeful that things would get better and remember they could always be worse. I tried to always have something for him to look forward to. Our amazing, loving community showered him with toys and gifts that meant we never ran out of things to do in the hospital. When faced with pain, I taught him the Bradley Method breathing techniques I’d learned for his birth to keep him from having crying fits. I didn’t know what to do, I just did the only things I could think of.
When I was young, my aunt had given me the book ‘The Tao of Pooh’ as a gift. That book taught me something that has shaped the way we have experienced this journey. I learned at Cole’s age, “Pain is inevitable, suffering is optional”. Years later when faced with my son’s cancer diagnosis, I knew that I couldn’t protect him from the pain he’d face, but I could help him not to suffer. When I had to let them hurt him to make him better, he didn’t understand it, but he didn’t question or fight it. He bravely and without complaint tackled every obstacle like it was nothing. He made cancer look EASY to many because he made a conscious choice (sometimes a very difficult one) to NOT SUFFER. In 2010 when the news of his recurrence and for all he might now face was devastating to me, it was Cole that reminded me to stay positive and that it would all be okay. He continues to choose to focus on LIVING, staying busy and active, and NO matter what he’s had to endure he has chosen not to suffer. Yes, he has to take meds with some side effects but he makes the best of it and rarely complains. And most of all, Cole never asks WHY ME? I told Cole since he was born that he was destined for greatness, and we know that we have to trust whatever path life puts us on heads there.
So much has happened in the last three years, and much of it positive. The fact that Cole’s alive and healthy, completely unrestricted physically and living fully is a miracle, and really beyond any doctor’s expectations. I can’t say how or why we’ve gotten so lucky. I believe that it has something to do with my brave, courageous son and his positive attitude, our amazing community of support and the many individuals who are part of Cole’s Team, the care he’s received at the nation’s top facilities and some ambitious treatment decisions. But there are many tragic stories of many brave courageous children that had all that, that fought with determination and positivity, and still died. I don’t know if one day we will walk that path. But no matter what, I pray our story is always a story of HOPE.
“I have always believed, and I still believe, that whatever good or bad fortune may come our way we can always give it meaning and transform it into something of value.” – Hermann Hesse