A childhood cancer diagnosis is the type of news that spreads like wildfire. When Jackson was diagnosed, so many people reached out to us to extend their love, prayers and support. It was very kind, but incredibly overwhelming.
Because Neuroblastoma occurs in just 650 children each year in the United States, the people who knew someone who knew someone who’d had Neuroblastoma reached out to us. I had families contacting me from all over the United States to tell me their story and what they deemed was the best place to go for treatment.
And some of them were downright pushy with their opinions.
However, I quickly found out there was no miracle cure anywhere for this type of cancer. Just people that had good outcomes. But there was no prediction of the next kid would have a good outcome. I realized if there was some secret cure, wouldn’t everyone be doing it?
Chemo and radiation we could get anywhere — why not do it at our home hospital where we had tons of support? But Jackson was also going to need surgery to remove his tumor and we were told repeatedly that based on studies, a good surgery could mean the difference between recurrence and a life cancer-free.
So we turned our focus onto surgery. Everett and I wanted the surgeon to be the best and I mean the BEST if he was going after this massive tumor, which was still wrapped around major vessels leading to Jackson’s heart. Over and over Ev and I read about this one surgeon who did around 100 solid pediatric tumor resections (mainly Neuroblastoma) in a year, which is a lot. His name was Dr. Michael LaQuaglia, and he was located at Memorial Sloan-Kettering Cancer Center in New York City.
With a giant leap of faith, I called and scheduled an appointment for a second opinion and along with Ev, Jacks, my parents and Ev’s parents, we all flew to New York City in April to meet this doctor and see if his hands were the right hands for Jackson’s major surgery.
This photo was taken the night we got in before Jackson’s surgery consult; we had just arrived at our hotel in NYC and I snapped a photo of “the entourage” in the Big Apple. Everett and I had never been to New York before and we were anxious, way out of our element. Jackson handled it all like a pro. (Of course he did — he had all his people with him!) At the end of the day, Ev and I just wanted to have no regrets – we didn’t care where we had to go or how much money we had to pay.
We left NYC the next day, just hours after our appointment with Dr. L…and a surgery date in the books of May 8, 2009. It just felt right.
I cannot STRESS the IMPORTANCE of checking with another doctor or institution when dealing with a serious diagnosis. Don’t fall silent to the white coat!
To read more details of this process, please check out my past blog post: Never Second Guess a Second Opinion.