[personal profile] indeliblesasha

Campbell Hoyt is a friend of a friend. Or rather, her mother is. You see, my friend E reached out to me when Gus was first diagnosed. Her daughter was a survivor of ependymoma, just a baby when she was diagnosed.

But soon after we met little H started having problems, and they found a recurrent and inoperable tumor growing in her spine. Recently, they found two more in her brain. While she's responding well to the treatment they can give her, eventually her tiny body will be overwhelmed by tumors, and she will die.

I would like to pretty that up. She will pass away. She will leave us. She will go to a better place.

But the very real and very stark reality is that she is going to die because there is no cure for recurrent ependymoma.

Because of H's recurrence E has gotten to know many other families facing the same thing, and this is how we cam to know of Cam's plight. Her disease has progressed to such a point--and at such a terrifying speed--that it was time to scramble to make her last wish happen. All she wanted was to meet One Direction, but especially Harry Styles.

After a flurried twitter campaign the right message reached the right person and Harry tweeted Cam, letting her know he was thinking about her, and sending her all the love in the world.

Today he went to her home, and held her hand, and granted a small child her dying wish.

I cried when that picture was initially sent to me. I gasped, and I fought to keep the tears from spilling down my face.

But Gus was sitting next to me and saw the picture and asked why she was sitting like that. So I took a breath and took another and finally said, "She is very very sick. She can't sit up anymore."

Of course he asked why she is sick. So I breathed again and answered as matter-of-factly as I could manage. "She has brain tumors."

I continue to hold my breath every time the subject comes up, waiting for the day he makes the connection to his own fight with ependymoma.

I can name you one One Direction song, I think. And before today a picture of Harry Styles would have elicited a "He's one of the guys from 1D right?" from me.

But I think I'm just going to love him a little bit for the rest of my life, now.

Cam's reality is our nightmare. Once they recur--if they can get the tumor out again--a very small percentage of children will survive. Eventually another tumor will grow. And another, then another, until we cannot fight it anymore. Some children are more susceptible than others. There is a certain DNA pattern in some tumors that indicate they are more likely to come, and more aggressively. The medical statement is "with worse outcome."

Gus had that kind of tumor. H has it. I do not know if Cam does, but I would not be surprised.

But I'm sitting here, weepy with joy for little Cam and her last wish. So glad she got this one shining, beautiful thing in her too short life.

Fuck cancer.
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January 2017


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