The last five days, I have been on a mission. I have one goal. There is a single thing on my mind. It’s day 5 of Childhood Cancer Awareness Month, and I am scouring the internet for other neuroblastoma survivors. I’ve learned that just because a patient is declared N.E.D (No Evidence of Disease), it doesn’t necessarily mean they are cured. On a message board, a senior member put it like this:
I think this is important to understand, especially to those who may just be introduced to the term, that NED does not mean NO CANCER. It’s like if you visually scan a room or walk the perimeter with a magnifying glass and look for spiders, see none, and say there is no evidence of spiders (NES). I’d be very surprised if there actually were no (none, quantity zero) spiders in or around the house at that time. You just haven’t evidence [of] any. It doesn’t mean there aren’t any.
This is scary to me, not only because I hate spiders (all creepy crawlies, really) but because I hate cancer. All forms, but especially childhood cancer. Not only because I’ve battled it and won, but because it attacks the most vulnerable, the most helpless, the most innocent. I hate the fact that children are not getting to grow up, to go to high school dances, to get their driver’s license, to graduate high school, to go to college, to meet someone special, to get married and start a family of their own. There is so much potential lost every single day. I hate it. I hate it so much that sometimes I feel like I am going to explode with sadness and anger and “what-the-heck-is-going-on-in-this-world?” The answer is always the same. Too much and not enough at the same time.
I got a book from the library the other day. It’s called Saving Savannah, and it was written by Savannah’s maternal grandmother, Barbara, or as she is often called, BG. Little Savannah even calls her that! Savannah was diagnosed with stage 4 neuroblastoma in January 2009, when she was three and a half. Her primary tumor was on her right adrenal gland, cancerous cells in her lymph nodes, and her bone marrow was 90% covered in neuroblastoma. The doctor told Savannah’s family that if they decided to just take her home and enjoy her last days, she wouldn’t take them to court. Savannah wouldn’t last two months without treatment. Luckily, Savannah’s mama and daddy said Savannah was doing the treatment, and basically told the doctor that they were ready and willing to do whatever it took to save their baby girl, their only child. I read Savannah’s story in two nights, and bawled my head off and rejoiced when, in the end, Savannah proved all her doctors wrong and reached N.E.D status, and not only that, but she continues to be amazing – she’s 6 years old today and has started kindergarten.
She is a survivor, like me.
And I found two blog sites in the last two days written by mamas of little boys who have beaten neuroblastoma as well. It is not that I thought I was the only neuroblastoma survivor (at least I had hoped I wasn’t, and with this new generation of kids beating it left and right nowadays, I knew, I hoped, I prayed that that there were more, and there are! I know most of the survivors probably don’t remember the battle and they are going on with their lives as if nothing happened. Nothing wrong with that – if it works for them, it works for them. I don’t remember my own cancer fight, but I am standing up today because I choose to. Because I think 46 kids diagnosed a day in this country is too much. That is TWO classrooms full! Because I think 7 more kids dying every day is 7 too many. Because no child should fight something they have no way of understanding. But kids are resilient. They are upset in the moment, but once it’s over, they move on. BG Perkins marvels at this strength (for it is a strength) in her precious Savannah over and over again throughout her book, and I imagine she still does.
Savannah, Trey, Finn, Allison, Wes, Nate, and I will always be kindred spirits, because we’ve walked in the same shoes for a while. Some are still walking in them, but are getting ready to take them off. I pray that they get to take them off. And I pray that soon, this country will start a childhood cancer revolution (TheTruth365 is coming!) and it will be eradicated, and this awareness will spread to other countries, and the world will unite with this goal – to protect the future, because children ARE the future.
Like the Page http://www.facebook.com/theTruth365film
Sign the Petition http://thetruth365.org/petition/