Define “rare”…

I’ve read many things about childhood cancer, and, in particular, neuroblastoma. Although ALL childhood cancers are underfunded, I’ve often focused on neuroblastoma for two reasons. First, it’s what killed my friend’s daughter, Isabella Santos. And second, it’s not as rare as the medical community might like us to believe.

Neuroblastoma is a cancer that grows from immature nerve cells. It typically affects infants and children under the age of five, though kids as “old” as 9 and 10 have been diagnosed as well. Close to 1,000 children in the US alone are diagnosed with neuroblastoma each year. Approximately 70% of those children will have advanced-stage disease. It is difficult to diagnose and when it is diagnosed, it progresses very rapidly. After treatment, about half of those diagnosed will relapse. Relapsed neuroblastoma has NO KNOWN CURE. Which explains why more than 35% of children with relapsed neuroblastoma die. Neuroblastoma is the most common solid extra cranial tumor found in children. Every 16 hours, a child with neuroblastoma dies.

And yet, neuroblastoma is considered too “rare” to allocate significant funds to find a cure.

Once I began looking more closely at neuroblastoma, I began finding child after child after child after child who had been diagnosed with it–most of them at stage IV. The more kids I found out about, the less rare neuroblastoma seemed.

Consider just one website dedicated to neuroblastoma: The Sierra Rayn Foundation (www.sierrarayn.org). This foundation is named in honor is a little girl who was diagnosed with stage IV neuroblastoma at the tender age of 21 months. After enduring 11 months of treatment, she passed away at the age of 2 1/2. The website in her honor contains lists of children who have fought or are still fighting neuroblastoma. There are 11 PAGES of children’s names. Many of them have died, while the rest continue to fight.

Add to that the lists of names that appear on other childhood cancer websites, such as Alex’s Lemonade Stand (www.alexslemonade.org) and Cole’s Foundation (www.colesfoundation.org), just to name two, and the last thing that occurs to you is that childhood cancer is RARE.

How can something that kills so many innocent children possibly be considered rare? It’s absolutely f*cking ludicrous!

Every one of these kids has a story. Many of them end with the notation that the child “earned his/her angel’s wings.” That makes it seem so peaceful and lovely, doesn’t it? But it’s not peaceful and lovely. It’s agony. What really happened is that after enduring more suffering than most of us can fathom, the child was then eaten alive by this awful disease. Many of these poor kids were in agonizing pain right up until the moment they died, while their parents hopelessly watched. And when their child’s suffering finally ended with death, the slow death of their parents first began. Because when a parent loses a child to a disease with no known cure, their agony goes on EVERY SINGLE MINUTE of EVERY SINGLE DAY, not only because their child died, which is bad enough, but because they could find no treatment to help save their child.

How do I know this? I’ve read the heartbreaking journal entries of Erin Santos and Maya Thompson. They describe the pain in great detail. So well that I can almost feel it myself. And after reading what they went through with their children, it pisses me off that anyone could call the cancer that took Isabella and Ronan RARE. That’s just bullshit!

The one thing Erin Santos and Maya Thompson have taught me is that childhood cancer can strike ANYONE. No one is immune. Not you. Not me. Not my girls. No one. Because it’s not rare. Too many kids die for it to be rare. And if people don’t become aware of just how UN-RARE neuroblastoma and other childhood cancers are, they will continue to harbor that ridiculous notion until, G-d forbid, it strikes their family.

Childhood cancer can happen to anyone.

Childhood cancer is not rare.

The face of childhood cancer has many names. Isabella Santos. Ronan Thompson. Joey Aquaro. Brendan Hadvab. Alexandra Scott. Aaron Pinsky. Bella Rodriguez-Torres. Lane Goodwin. Alex Lonero. Avalanna Routh. Talia Joy Castellano. Samuel Johnson. Ezra Matthews. Jack Bartosz. Niamh Curry. Aisylin Bledsoe. Lily MacGlashan. Hope Bertelsen. Madison Chind. Anaya Jordyn Green. Bailey Sarwa. Breanna Ehmer. Jack Bartosz.

Those are just the names I can remember off the top of my head.

There are thousands and thousands more.

Rare? Please. Getting struck by lightning while running around in your underwear is rare.

Childhood cancer kills too many kids to be rare.

Be aware and spread the word, so research toward cures is funded. Not ignored.

Because these kids deserve a hell of a lot better than what the medical community can currently offer them.

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