Emma Joy Ford

The more I follow the prayer circles, blogs, and Facebook pages for children with cancer, the more angry I become at the use of the term “rare” to describe this awful monster. This morning, I saw an urgent request via the Facebook page of Lane Goodwin to pray for a four-year-old named Emma Joy Ford. Emma is fighting sPNET (Supratentorial PNET Primitive Neuroectodermal Tumor), which is in the Medulloblastoma family. Her mother posted a photo of her precious little girl, who can no longer move her arms or lift her head, and she’s begging G-d to spare Emma the enormous amount of pain she’s in.

As a parent, I get upset when one of my girls has a sort throat or a headache, or when she cuts herself and says it hurts. I can’t even begin to wrap my head around what Emma’s mom must be going through. How the hell do you watch cancer eat your child alive, knowing there is nothing you can do to stop it? How do you deal with knowing there’s no way to relieve your child’s pain except to give her high doses of morphine, which will kill her pain, but will also render her unconscious–knowing that when you do this, she will likely never wake up again?

Search Google for the phrase “childhood cancer” or search the hashtag #childhoodcancer on Twitter, for example, and you’ll realize pretty quickly that Emma is one of thousands of children in the exact same position. You’ll also find that there are thousands of other children–many under the age of 5–who have already died in the battle. And still thousands of other children who are in various stages of treatment.

Rare? There’s nothing rare about childhood cancer. Well, actually, that’s not true. What’s rare is a fucking cure. That’s what’s rare. And it’s infuriating.

This month, people everywhere are wearing pink, buying things pink, running for things pink, and donating to things pink in honor of breast cancer awareness. Millions of people on Facebook and Twitter have pink ribbons set as their avatars and are posting pictures of pink shoelaces and pink hair and pink clothes. And as a result, everyone knows what breast cancer is and how lethal it can be without adequate treatments, which the pink movement supports.

Imagine how amazing it would be if last month, everything had been gold in honor of childhood cancer, and the awareness was a great as it is for breast cancer. Imagine Facebook and Twitter and the White House lit up in gold! Imagine every roll of Charmin toilet paper or every box of Puff tissues with a gold ribbon and for every item sold, money went directly to finding cures for medulloblastoma or neuroblastoma or AT/RT or alveolar rhabdomyosarcoma or Ewing sarcoma…how many potential cures for childhood cancer could be cultivated then? And more importantly, why isn’t this happening?

Years ago, breast cancer was a taboo subject, too. Until affected women started talking about it and demanding that people and doctors and the government stand up and take notice. And now, today, there’s a whole pink movement that the whole world knows about.

Next September, there needs to be a gold movement for Childhood Cancer Awareness month. And getting that to happen means building awareness now. It’s what Maya Thompson and The Ronan Thompson Foundation are working so desperately to achieve. And it’s long overdue. We all need to do our part to make sure this happens honor of the thousands of beautiful children who are suffering because there’s no cure for their disease.

In the meantime, please pray for Emma Joy Ford and her family. They need your prayers. And if you, like me, have a tendency to get angry about all the pink when you think of what that precious little girl is going through, don’t.

Instead, smile knowing that pink is Emma Joy Ford’s favorite color. And dedicate the pink to her.

Edited: Emma passed away this morning, just a couple of hours after I posted this. Please pray for her family…

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One Response to Emma Joy Ford

  1. Oh Alyse, everything I thought I was going to say as I was reading your post….Fell out of my head and once again my heart feels like a bleeding, burning mess in my chest once i got down to the very bottom…oh that poor sweet innocent child!! I was preparing to include her in my prayers tonight and even though she still will be…the prayer will most likely circulate around begging God for mercy on her poor parents..the other victim to this fucking disease. Because I know at least sweet Emma Joy is at least with God and not suffering in pain. Now her parents get to carry that pain with them for years, the good memories, the tragic ones, the absence of her laughter, an empty room full of toys, clothes, remainders of this amazing little person they just lost. They must learn to live thru it and they will change and never be the same person , the same family before all of it began. *sigh* I can’t stand the negligence of attention to this asshole (<3 Maya!)
    Everyday when I log onto Facebook and hold my breath, petrified to see which one of these beautiful children has unfairly passed away and which still suffer and suffer. When will this bullshit stop?! I cry all night after Maya's blog, I admire her strength but I know how earnest her pain is in losing Ronan. I think of that beautiful child daily as I look at my son. I can't imagine that leval of pain. I feel like if I ever met her and would give her a hug, I might squeeze too tight or even not want to let go because what her, Ronan, Cindy, Ty and the Fords went thru because of this fucking cancer..is a fucking nightmare. How do you find the will to continue?
    I'm sorry for going on so long again…your posts always move me…thank you again Alyse!
    I hope the fundraiser is going great!
    ~ Broken hearted Trish

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