I’ve had many people ask me to share my story, to talk to parents of newly diagnosed children, why don't I post more about it and much more. To be honest, it's difficult for me. I have survivor's guilt. I don't know why I lived while so many others do not. With that being said, I will share some of my story with you. I want my story to give people hope.
Keep in mind as you read this that the amount of chemo, radiation and types of surgery I had were all experimental, this is a long time ago. (Okay, not that long, but……Just sayin…..) I am a case study. They had nobody to compare me to, so they didn't know what was "too much" or not.
Things are done differently now and so much more is known! My mom knew something wasn't right (like most mothers) and wasn't believing the "she must've hit her head to have gotten that knot" and "All babies scream like that, she's not in pain, it's colic....." Finally, after weeks, the golf ball sized knot coming out of my left temple was scanned. I was admitted and was given 3-6 weeks to live. I had Neuroblastoma stage 4. The Cancer had spread everywhere. Liver, brain, lungs, spinal fluid, etc.. My family was told to say goodbye.
At the time of my diagnosis, nobody had ever survived stage 4, Ever. I was dying. The surgeons decided to take me to the OR as a last ditch effort. What did they have to lose, right? I had a radical (for that time) surgery to remove as much cancer as possible. My left adrenal gland, left kidney, partial bowel in more than one location, appendix, gallbladder, over half of my liver, part of my pancreas, surrounding soft tissue and lymph nodes removed. I was taken to the ICU where I was given my Last Rites. I coded many times.
I had very large amounts of radiation to my left temple and abdomen. I also had chemotherapy in astronomical doses. It was even noted at one point that mustard gas killed cancer, so I was even given some form of that too. Crazy, I know, but I was a case study. I will say that the medical staff may have went a bit crazy with their experiments, but they were great people. My parents were struggling financially at that time (not surprising with the medical bills), so the hospital had a phone installed at my parents house. When picked up, they were automatically connected to the oncology/hematology floor. They are like family. They saved my life. (I know He gets the real credit!)
Some people think that once the cancer is gone, then you’re in the clear after a while. What you need to realize is that Neuroblastoma is TOUGH, as all cancer. It takes some nasty, toxic chemicals to kill cancer. Imagine what these toxic chemicals do to your normal cells. It kills them too. It alters them. Not to mention the radiation's effects. The destruction that Cancer has caused is still there, as is the destruction that the treatments caused. Add lifelong effects from the surgeries I’ve had while we‘re at it..
Once you've had Cancer, your chances of a secondary Cancer (different type) goes up. Radiation causes Cancer. Chemo drugs can cause Cancer. Ironic, Isn't it? I'm still checked regularly by Cincinnati CMC. The thing is that we really don't know the long-term effects of these things, which is why I'm still being studied.
I now have a beautiful family. My youngest daughter is battling many congenital birth defects. Among them are an array of upper airway anomalies as well as skeletal problems. Could the treatments that saved my life cause my baby’s health problems? It’s a very distinct possibility. We don’t know how my DNA was effected. Cancer effects your life no matter how long you’ve been in remission.