What, isn’t neuroblastoma deadly enough?

I was reading the newspaper this morning and came across a blurb about the MD Anderson Cancer Center in Houston’s declaration that they plan to launch a “‘moon shot’ fight” against eight types of deadly cancer: lung cancer, prostate cancer, melanoma, breast and ovarian cancers, and three types of leukemia. The aim is to put $3 billion dollars into research to dramatically cut deaths from these cancers.

Inherently, this is a great thing. No cancer is a good cancer. Anything that can be done to eradicate death from cancer is a something we all should celebrate. But still, when I read this, I was once again struck hard by the fact that none of the cancers listed were specifically related to children. Sure, leukemia strikes many children, so the fact that more money is going there is definitely a positive thing. But when I initially saw that the aim was to fight deadly cancers, I fully expected to see neuroblastoma listed among the eight. After all, neuroblastoma is quite deadly. The cure rate for those with diagnosed with high-risk, stage IV neuroblastoma (which is what most of these kids present with by the time it’s diagnosed) is low. But I didn’t see neuroblastoma. And it made me angry.

Why are kids so damned unimportant to these people???

I don’t disagree with the notion that it’s important to find cures for all types of cancer, not just those that affect children.  My father is a survivor of stage IIIB colon cancer. Had he not participated in an amazing clinical trial, he likely would not be here today. My mother was recently diagnosed with and treated for Stage I uterine cancer. My mother-in-law was recently treated for breast cancer. My grandfather and aunt died of lung cancer. My uncle died of liver cancer. It’s not like I haven’t been touched by cancer. It’s not like I don’t want to see cures for all kinds of cancer.

But what about the children who are dying of cancer? Why isn’t anyone thinking about them?

With $3 billion dollars going toward cancer research, why isn’t there room for neuroblastoma research in that little pot of gold? Or any of the other “blastoma” cancers that are killing children every day?

The likely reason cancers like neuroblastoma are left out? Not enough kids die from it to make the research funding worthwhile.

Tell that to the parents of the 750+ kids a year who are diagnosed with neuroblastoma. Or better yet, tell it to the kids who have to suffer the unbearable treatments, only to have a small chance of living beyond five years.

How can we live in a world where it’s okay to close the curtains around these dying children and pretend they don’t exist?

Because it’s not okay.

This is why people like us need to rally behind amazing parents like Erin and Stuart Santos and Maya and Woody Thompson, to stand up and make some noise about the need for research into cures for childhood cancer. They can’t keep doing it alone. They need more voices. They need help. So to help them, we have to actively support organizations like The Isabella Santos Foundation (www.isabellasantosfoundation.org), The Ronan Thompson Foundation (www.theronanthompsonfoundation.com), and St. Baldrick’s (www.stbaldricks.org). They’re fighting for kids every day. And they need loud voices to join in the fight with them.

In her blog (www.rockstarronan.com), Maya Thompson begs people to visit a children’s oncology ward. She tells them to look at the distraught parents. Look at the suffering children. Understand that too many of those children ultimately will DIE because research has not caught up to their advanced-stage disease.

Which means the kids will suffer unbearable pain and suffering, many of them for years, only to die in the end because money for research goes to other, more prevalent cancers instead of theirs.

If we don’t fight for those children, not only will they continue to die, but so will their hope and the hope of the thousands other kids diagnosed with the same horrible childhood cancers.

Once hope is gone, what else is there?

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