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?”
“What?”
“She hugged me. She hugged me right in the middle of Costa Coffee.”
“Oh my God.”
“Quite. Well, you know how freakish I am about such things, even with you. It was awful. I didn’t think she’d ever let go.”
I started to giggle, the thought of Anna in Costa Coffee, stiff-bodied, not hugging back.
“It was one of those situations where afterward I was kicking myself, because I really wished I had told her just how rude, how insensitive she was being, but I couldn’t because Jack was there, and anyway, what would have been the point?”
“That’s awful,” I said. “Some people are just assholes.”
I went to the kitchen and poured myself a glass of wine and joined Anna on the sofa. “It’s silly to get so pissed off at this stuff,” I said, “especially with everything that’s happening, but I got so angry the other day over this fucking Facebook post.”
“Who was it?”
“Just this girl from school. It was this long, long post about how she had had some growth on her neck, and she was worried that it was cancer, and she thought she was going to die. So they cut it off, and of course it turned out not to be cancer. Then she went on and on about this doctor who looked her in the eyes and said, ‘Now you should stop worrying and go and live the rest of your life.’ And then all these hashtags. Hashtag positive. Hashtag cancer. Hashtag fuck off.”
Anna laughed, and I couldn’t remember the last time I had seen her smile. This was what we used to do. Our wine-fueled rants about friends and colleagues. Happy conspirators, sitting up late into the night.
“I’m going to talk to my boss tomorrow,” Anna said, “about taking a leave of absence around the time of the
