Sometimes I wonder, how does the world keep turning?
- Posted on: Oct 18 2012
Where do we go from here? I don’t mean to start out this blog journey on a sad note, but how can I not, right? Tanner Jayden, my first born son, lost his battle with alveolar rhabdomyosarcoma, a brain and central nervous system tumor at the age of 3 ½. Diagnosed just before his second birthday, we were full of hope. The tumor was treatable, although not fully operable. The neurosurgeons would debulk the tumor, removing as much of it as they could, and then radiation and chemotherapy would take care of the rest. We were told the prognosis was in the high 60% that he would do well. Not great (compared to the 81-88% for breast cancer, but more about that later), but we’d take it. We’d be optimistic. Tanner was a miracle at birth (after trying 4 years to conceive and going through IVF) and would be a miracle now. I pictured the ad in his high school graduation yearbook – “we are so proud of our miracle, you have overcome so much in your life, and you always come out on top” (of course he’d be graduating with honors, and captain of the golf team, but even if he wasn’t, hey, he LIVED, and I’m proud as hell!) Tanner finished his 40 week protocol of chemotherapy. Yes, “protocol”. A prescribed treatment of chemo and radiation that was developed just for his cancer…. “protocol” in my mind meant something that they found to work. A few weeks after he completed treatment, he went for his follow up MRI, and that’s when we found out, it was back. Not only did Tanner’s cancer come back, the cancer cells developed into “leptomeningeal enhancement”… basically, imagine cancer cells sprinkled like powdered sugar, all over the layers of his central nervous system… coating his brain. Obviously this is in-operable, and we would continue to treat it, but statistics said with this diagnosis, 4-6 weeks. How is this possible? We were just celebrating his independence from chemo! He was declared NED (no evidence of disease) and now we have 4-6 weeks left??
Tanner went though full cranial-spinal radiation. Basically, we were told if he were to survive, he would be blind, paralyzed, and mentally retarded. He may have brain necrosis (cell death of brain tissue). The cancer may not respond at all to the radiation. As parents, we had to sign consent after being told this. Can you imagine? Oh yes, please radiate my son’s brain to oblivion… because it is the only chance he will survive… where do we sign?
4-6 weeks my butt. Tanner lived 8 months after his relapse diagnosis… and he really lived. He went to school, he played with friends, we went on vacations and he celebrated another birthday and Christmas. He played with his baby brother, Chase, who was only 6 months old (I was 3 months pregnant when Tanner was diagnosed). In his last 2 weeks, Tanner took his make a wish trip to Disney World, where he spent quality time with his family, where he squealed with delight as he soared on Aladdin’s Magic Carpet ride “I flyin’!”… where he had every single character come out to greet HIM personally. Where I got to sleep with him, nose to nose, just like at home, for another week of my heaven. Once we came home, in a rapid decline, a week later, Tanner spread his angel wings and flew to heaven.
Tanner’s life was short, and he never really knew he was sick. He had a life of quality. He was loved and his life impacted others dramatically. It is the lives of the ones he left behind, his parents, his brother, his family and friends, that is broken. My life, as a bereaved mother, will never be the same, will never be full…. Until I take my own last breath. Chase is the sunshine of my life, and for him, I will do whatever it takes to make sure he has a good life. I want him to remember Tanner, to be aware of pediatric cancer, to know there are so many things to be grateful for and to never take life for granted. But, there will always be a void in our hearts that can never ever be filled.
This is part of our story, this is the life we have. This is the life of a mom-cologist. Through Tanner’s diagnosis, journey and thereafter we have met so many other families in our situation. The Lexiebean Foundation was one of the organizations that helped us during Tanner’s relapse, and it meant so much to us on a personal level, coming from another couple of bereaved parents, that I knew I had to become a part of this, to keep Tanner’s name alive. So many years I thought the kids with cancer were just the ones on the St. Jude’s commercials…the telethon kids. Little did I know, it would be my kid.
I hope you enjoy this blog, I hope it gives insight to many of you who are supporting your own friends and families who are dealing with pediatric cancer. I hope it gives comfort to other moms and dads knowing you are not alone. I hope to bring humor (yes, it’s possible) to this horrific journey, and most importantly I hope to bring hope to anyone reading this. I am very often sad and sometimes even mad about the loss of my Tanner. Why my kid? Then I hear about so many others… and I say “why any kid”?
The White House is pink this month, the NFL is wearing pink socks and shoelaces. Breast cancer awareness is everywhere you turn. Breast cancer research is funded better than any other cancer (and trust me, as a daughter and granddaughter of two breast cancer survivors, I appreciate it). But what about pediatric cancer? Less than 3% of all cancer funding is directed at the twelve major types of childhood cancers… and forget if your child has a rare cancer… I want to see the world lit up in GOLD for the month of September. The month before breast cancer awareness is pediatric cancer awareness. Why don’t our kids get as much advocacy as our boobs? Seriously? Because I would cut both of mine off in a heartbeat to have my son back.
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