The day Jackson was diagnosed with cancer, it was like being hit by a bus.
"Your 1-year-old has cancer." (Bus.)
"He's going to need a year or so of grueling treatment." (Being dragged behind bus.)
"He has a 30-40 percent chance of survival." (Hit by second bus.)
I remember walking with our nurse to the registration department to admit my baby for his first round of chemo. It was after the full diagnosis conference, and I felt like I wanted to kick someone. I was mad that kids could actually get cancer. I was mad about the lack of options to cure pediatric cancer, especially Neuroblastoma. I was spitting, hissing, Momma mad.
In my memory, there is literally a light that shines down on this nurse's head as she listened. She comforted and reassured me that we were doing the best we could based on the research available. That she hated it as much as I did. She spoke in detail about what was going to be the most important part of the plan to beat his cancer, based on her years as an oncology nurse. She gently, but firmly, yanked me out from under the bus.
From our conversation, I knew I had to stop sitting still. Stop accepting that we got the best, without checking it out myself. I chose to not accept statistics. I couldn't take my son's cancer away, but there were other things I could do.
Everett and I got busy researching. When it comes to cancer treatment, comfort zone be damned. Go where the best is. Fight with the best medicine. Based on our late nights and private referrals from other cancer parents, we discovered one of the best Neuroblastoma surgeons was at Sloan Kettering in New York City.
Actually getting a second opinion seemed daunting at first. Traveling from Virginia to New York for surgery scared me. Would our insurance cover it? Would we like the surgeon? Where would we stay? Could we afford it?
But that's the big thing about questions -- if you never get the answers, you'll always wonder if you did the right thing.
It only took a few minutes once we met him to know this was the surgeon who would operate on Jackson. He performed more than 10 times the amount of solid tumor surgeries a year than our home hospital. He had published reports we could read and ongoing clinical trials. In addition to great hands and surgical results, he was a kind man. I found that parents were traveling from all over the world to have him do their child's surgery.
A month later, we were back at MSKCC, but this time to stay for surgery. It was all worth it in that moment when the surgeon came out, still in his scrubs, to tell us he'd removed all of Jackson's cancer.
It's been over five years since his surgery and I know we made the right decision by getting a second opinion. The combination of chemotherapy, radiation, stem cell transplant and immunotherapy at our local children's hospital, with the surgery in New York, just seemed to work on Jackson. He's still cancer free. Even if it hadn't, I know we did everything we could possibly do. That means something.
One of the biggest things I've learned as a parent is to never second guess getting a second opinion. How else will you know what else is out there or if you're already where you should be? My advice is to quiet the questions and start the process.
This is how:
- Get to know your illness. I cannot stress this point enough. For us, it was Neuroblastoma. Know it inside and out. Find the hospitals that specialize in your particular illness. Know it so well that you stump your doctors and they have to learn more. Your Google M.D. will help you narrow down locations and doctors.