We Own the Sky(35)

Subject:

Sent: Wed May 21, 2014 1:05 am

From: Scott Wayland

To: Rob Coates

hello mate just wanted to say sorry about the other day in the pub. I know you’re going through so much right now and probably wasn’t as attentive as I should be.

btw,  I  spoke  to  the  doctor  friend  of  mine,  pulled  a  few  strings  and  he said the best in the business is dr. kennety on harley st. he really knows his stuff apparently. lemme know if u want to go down that road and I can hook u up...

regarding  other  stuff,  I  still  desperately  need  to  talk  to  you  about  the China thing, selling I mean. they’re pestering me and I don’t want to lose the window on it. time to chat about it? if you don’t want to come by the office we could meet at The Ship or I could pop by the house.

in other news, Karolina broke up with me and ive taken it pretty hard,

so not going through the best time myself at the moment...

anyways, chin up mate. hope to see u soon.

Sent from my iPhone

Chin up, mate, as if West Ham had been crushed at home. Did he not realize how he sounded? With everything that was happening, was I really supposed to care that Scott’s latest Slavic fuck-buddy had moved on to better, richer things?

After I had calmed down, and made more coffee, I started to do some more

research. As I was searching for “PXA treatment options,” I clicked on a link that led me to a forum called  Hope’s Place. On the front page there were yellow-winged butterflies dancing across a baby-blue-and-pink sky. In one corner, underneath a giant rainbow, was a picture of Hope: a seven-year-old girl in a Glee T-shirt.

I clicked on Hope’s picture and it led to a discussion forum for parents of children with brain tumors. I dug deeper and found a thread for Jack’s tumor type, PXA.

I read quickly, scrolling through the posts. From what I could tell, removal by surgery was the preferred treatment option, but some of the children were given radiation therapy, and I didn’t know why. Was that for children with more serious tumors? An option we should consider for Jack?

Can anyone help us?

by Rob? Wed May 21, 2014 8:45 am

Hello, everyone, I’m new to Hope’s Place. We have recently received the

news that our 5-year-old son Jack has been diagnosed with pleomorphic

xanthoastrocytoma.

In a few weeks’ time, Jack will have an operation to remove the tumor

and then we will know more.

Apart  from  this,  Jack  is  in  very  good  health.  He  has  some  balance issues,  which  prompted  us  getting  him  checked  out,  but  you  wouldn’t know he was ill at all. He is still very active and sharp.

The doctor was very hopeful that Jack could be cured, but we realize

there is still a risk that he may not. They have recommended just surgery, but I see some children have also had radiation as well. What would be normal in our son’s case?

Also,  I  have  been  reading  on  this  board  about  Gamma  Knife  and

Proton therapy. Would these be things we should be looking into?

Any information would be very much appreciated.

Best Wishes,

Rob

I heard Anna come home, the door gently close, the rattle of her keys on the hall table, but I couldn’t hear Jack, his usual greeting of “Hello, everyone!” I rushed to the door and found Anna standing in the hall, with Jack slumped over her shoulder.

“He fell asleep in the car,” she said, removing her second shoe. He seemed to sleep a lot now, nodding off when he was watching cartoons or even the shortest car journey.

I took him in my arms and carried him up to bed. The midafternoon sun was strong, so I closed his curtains and laid him down on his bed. He stirred, turned to his side and pulled his knees up to his chest.

When I got downstairs, Anna was staring into space, a glass of wine in front of her on the coffee table.

“You okay?” I said.

“No, I’m not actually,” she said. The skin on her neck and chest was red, a rash that appeared when she got angry or nervous.

“What happened?”

“God, I’m fuming right now. Stupid fu—” She stopped herself. For as long as we had been together, I had never once heard Anna swear. “Stupid, stupid people everywhere.”

She took a large sip of wine and put the glass back on the coffee table. “I was in Costa, the one at the bottom of the hill, and it was quiet and Jack was in the play corner drawing. And it was nice, because we haven’t had time alone for a while, and he had a chocolate milk shake and he was an absolute delight. Then I saw this woman, Joanna. Do you remember her? From Jack’s Little Gym thing.”

“Joanna, yeah, it rings a bell. Oh, the woman who was always going on about her divorce?”

“Yes, that’s the one. Well, she sort of sidled up to me, in this really creepy way, and said hello and I knew she knew because she had this weird nervous grin. Then she said, ‘I’m so very sorry’ and she looked over at Jack and said, ‘poor little thing,’ and he was right there, right there next to her. And then she said, ‘I suppose you’re making memories now.’ Making memories. She actually said that. And I just didn’t know what to say, so I said, ‘well, Jack is going to make a full recovery,’ as if I had to justify myself. To her. As if it was any of her damn business. And then you know what happened?”