The Miami Herald Highlights the Nightmare that is Neuroblastoma.

For the past month, I’ve been trying to do my part to raise awareness of childhood cancers. I’ve blogged about it. Facebooked about it. Tweeted about it. I’ve worn my gold ribbon lapel and answered many questions about it. I’ve worn a bright-yellow Alex’s Lemonade Stand Foundation t-shirt and answered questions about what they do. I’ve worn my Team Lane t-shirt that boldly says, “Cancer Bites.” My Truth 365 t-shirt. My St. Baldrick’s t-shirt.  I’m sponsoring an Alex’s Lemonade Stand “Change for Childhood Cancer” at my daughters’ school. I’ve repeatedly worn  and said anything that brings awareness to childhood cancer. All in the hopes of doing my part to raise awareness and funds for cures.

And today, for the first time, I saw something that made me believe that finally, people were paying attention to the problem.

I was reading today’s Miami Herald and on the front page of the Tropical Life section (which is dedicated to health-related issues on Tuesdays) was a story of a beautiful seven-year-old boy named Sal Vanni, who died of stage IV neuroblastoma. The same bastard cancer that killed Isabella Santos and Ronan Thompson and Alexandra Scott and thousands of other beautiful children.

I’ve read so many of the stories. Leg or belly pain. Treated as a virus. Pain gets worse. Misdiagnosis follows misdiagnosis until finally, the parents hear the four worst words in the English Language: “Your child has cancer.”

And when the diagnosis is stage IV neuroblastoma, too many of these parents learn pretty quickly that the prognosis is grim. Because after suffering the effects of chemotherapy treatments formulated for adults (because the drugs for children don’t exist), far too many of these parents hear the next four worst words in the English language: “The cancer is back.”

And once that happens, the chance of long-term survival is almost gone. Relapsed neuroblastoma has no cure. It’s aggressive and it’s ruthless. So without money to fund research into finding a cure, these children die, not peacefully, but painfully, with broken, emaciated bodies. Their parents have to watch helplessly as cancer eats their child alive, as they frantically search for some kind treatment, ANY kind treatment ANYWHERE to save their child’s life. But sadly, these treatments simply do not exist.

In the Herald article, Sal’s parents describe that agony in detail, so for Miami Herald readers, it’s now hitting very close to home. Miami also is the home of Bella Rodriguez-Torres (“Pray for Bella” on Facebook), who is undergoing chemotherapy for relapsed AT/RT, another deadly childhood cancer. So for those of us who follow these stories–and even for those who, until today, knew nothing of them–we feel like we “know” these kids. I pray for Bella every day and night. In fact, I have a list that grows every day. Each time I learn of another child suffering from childhood cancer and read his or her story, that child sears my heart and gets added to my prayer list. Sadly, the just keeps getting longer and longer.

But hopefully, with stories like the one The Miami Herald ran today, awareness will grow, people will start to get angry about these kids who are sick and dying, and maybe, just maybe, those people will start donating to foundations like the Mystic Force Foundation (www.mysticforce.com), The Isabella Santos Foundation, The Ronan Thompson Foundation, or Alex’s Lemonade Stand Foundation. Foundations named, respectively, for Sal Vanni (7), Isabella Santos (7), Ronan Thompson (3), and Alexandra Scott (8), who all died of stage IV neuroblastoma. And there are hundreds of other worthwhile foundations just like them, named for children who are fighting or have died fighting this horrible beast that is cancer.

If reading about these kids hasn’t touched you yet, let me leave you with seven-year-old Sal Vanni’s last words, as reported in the Herald by his mother, Silvia. The last thing Sylvia heard her son say before he died:

“I’m in so much pain, I need a new body.”

Words no child should ever, ever have to utter. And an agony no parent should ever have to bear.

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2 Responses to The Miami Herald Highlights the Nightmare that is Neuroblastoma.

  1. Silvia Vanni says:

    Hello Alysse, I am Sal’s mom. Thank you for all you do to spread awareness of Childhood Cancer. The article you read in the paper was one of my best accomplishments yet. It is so difficult to get people to listen to anything that has to do with Childhood Cancer. No one wants to talk about it. Well, I have made it my mission in life to make sure that everyone knows. I have also gotten the Superintendent of Miami Dade County Public Schools, Alberto Carvalho, to add Childood Cancer to all schools curriculums so that from an early age children are aware. The City of North Miami Beach declared October 16th officially Salvatore Vanni Day. Channel 7 did a special on us titled Mothers Mission which aired twice, once during the 5:00 news & then again during the Stand Up 2 Cancer national telethon. I spend every waking hour trying to get people to listen. I write hundreds of emails, 99% of which go unanswered……..but I keep writing. I also plan fundraisers and pass out flyers. I do whatever it is I can do. I’ve had people ask me why in the world I do this if my baby has already died and I can’t help him. Well, I may not be able to get my baby back, but I will be able to help keep other kids from suffering like my precious baby Sal did and help keep parents from the excruciating pain that I now feel every single day.
    It is only thru the help of people like you that one day others will know & understand about Childhood Cancer as they do now about breast cancer, which was at one time also a taboo subject.
    Thank you again for all you do. By the way, I see you are a professor @ U.M. My husband is a Neurosurgeon at U.M./Jackson.
    Much love to you,
    Silvia / Sal’s mommy forever

    • alyselancaster says:

      Hi Silvia, Thank you so much for taking the time to write to me. Believe me when I say you have a strong ally in me when it comes to raising awareness of and funding for pediatric cancers. A high school friend of mine lost his daughter to stage IV neuroblastoma this summer. She fought it hard for 5 years and, like Sal, she suffered unimaginable pain and suffering during her treatments. People cannot keep turning a blind eye to this. Childhood cancer is not bald smiling faces! And it’s certainly not rare! I think you’re doing an amazing job raising awareness and Sal would be so proud of your efforts to help keep other kids from suffering the way he did. I’m sure you’re aware of what Alex’s Lemonade Stand Foundation does, but did you know they actually offer things for teachers to add to their curricula–at various grade levels? So in your pleas to Alberto Carvalho, it might help to have those materials ready and at your disposal for him to see. They’re free through the ALSF website. But anyway, like you, I will keep writing and keep talking about childhood cancer. And next September, the city of Miami had BETTER be lit up in gold…in honor of your beautiful son. I’ll continue doing my part to ensure that it happens, I promise! (((hugs))) Alyse

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