by Luke Allnutt
Re: Can anyone help us?
by Chemoforlifer» Wed May 21, 2014 10:58 am
Rob,
Sorry you’re dealing with all of this. It must have come as quite a shock. While of course it is a brain tumor (and no one likes to hear those two words), do take comfort from the fact that PXA is a very treatable and survivable cancer.
(Just FYI, as you’re new here. I lost my only daughter, Hope, to glioblastoma multiforme five years ago when she was eight years old. I started this forum in her memory to try to help other people. I am a research scientist by trade.)
So, regarding concrete advice. I would highly recommend, if he hasn’t already, that your son get genetically tested. Even though you are looking at surgical resection as a cure, it’s always good to have things in the armory, in the unlikely event the tumor did recur.
Please feel free to ask me anything. I am always here to help.
Best Wishes,
Chemoforlifer
Admin
Re: Can anyone help us?
by Trustingod» Wed May 21, 2014 11:44 am
Sorry to hear this Rob, although, as you say, there is much to be hopeful about. We are in a similar position, although our baby was diagnosed a few months ago. We have found that our faith has been such a comfort to us in these difficult times. May God put his healing hands on your little boy. I will be praying for you and your family.
I stopped reading. These people weren’t us. They were the desperate parents you read about in magazines, who watched as their children slipped away. We had nothing in common, because Jack was so alive; the doctor had said he would be cured. Suddenly I needed to see him, to touch him, and recently these moments had become more frequent and painful, like crippling attacks of gout.
I was just about to close my laptop and go downstairs when a little mail icon pinged to let me know I had received a private message through the forum. It was from someone called Nev.
Subject: Hello
Sent: Wed May 21, 2014 10:16 pm
From: Nev
Recipient: Rob
Hello, Rob. I’m sorry to hear about Jack’s situation, although it sounds like you have a huge amount to be hopeful about.
I wanted to tell you my story, in case things don’t work out as planned. My son Josh was diagnosed with glioblastoma three years ago, when he was six. The doctors basically wrote him off. After they removed the tumor, they said there was nothing they could do, that it would definitely grow back and all they could offer was chemo and radiation as palliative care.
That was when I found out about Dr. Sladkovsky. Before you stop reading, hear me out. This is a legitimate clinic based in Prague. It’s not a cactus juice for a thousand pounds a pop cancer clinic. This is cutting edge stuff and utilizes all the latest treatments, in particular what’s called immuno-engineering.
Going to Prague was a risk of course. But we took it and our Josh underwent a variety of treatments. To cut a long story short, six months later, the tumor was gone and it hasn’t been back since. He is now a happy nine-year-old, living a normal life, and cancer is beginning to become a distant memory.
I have been banned from posting links to Dr. Sladkovsky on Hope’s Place (the software doesn’t even let me send them in private messages) so all I can say is Google Dr. Sladkovsky in Prague and you will find everything you need to know.
If you want to find out more about Josh’s treatments, please check out my blog at nevbarnes.wordpress.com or feel free to message me.
I wish you the best of luck. I’m crossing fingers and legs and toes and everything really. PM me if you want more info.
Nev
Nev sounded like a con man. I put the name “Sladkovsky” into the search field on Hope’s Place and hundreds of results popped up.
PLEASE READ re Sladkovsky Clinical Trial
by Chemoforlifer» Mon Jan 26, 2012 6:03 am
Dear All,
Regular users of the board might have seen several posts by Nev about a proposed clinical trial run by Dr. Sladkovsky. These posts no longer exist and have been deleted by the moderators. They were deleted because they explicitly violated the “no solicitation or promotion” rule.
There have been extensive discussions of Sladkovsky’s clinic on this board. One of the threads is here, for new users who maybe are not familiar with the clinic’s “work.”
forum.hopesplace.topic/article/1265%444
Dr. Sladkovsky’s clinic is not reputable. He has never allowed his immuno-engineering treatments to be evaluated in an independent, accredited clinical trial, nor has he ever shared the results of his work with other researchers. Every reputable cancer-treatment watchdog has concluded that his “immuno-engineering” treatment is a scam.
Best Wishes,
Chemoforlifer
Admin
I was angry and considered writing this Nev back, telling him what I thought about people preying on the parents of sick children, peddling fake cures over the internet. I read his message again. He was convincing and seemed to believe what he was writing. That, I supposed, was how he reeled people in. I logged out of Hope’s Place, closed my laptop and went to find Anna and Jack.
10
It was early evening and Jack could not sleep. It was a side effect of the steroids, which reduced the swelling from the fluid around the tumor. The operation was now only a week away, and Jack was antsier than ever. We tried to tire him out, reading him stories, letting him watch cartoons, but sometimes the only thing that would work was going out for a walk.
“How are you feeling today, beautiful?” I asked, as we walked along one of the winding paths up the hill to the heath. “How are your injuries?”
We had told him that he had an injury in his head and would have to go to hospital to take it away. Jack wasn’t remotely concerned. He seemed to think it was nothing more serious than a grazed elbow or a funny tummy. Last year, he had fallen off our backyard wall and had to go to hospital for stitches in his chin. Would it be the same? he said. Even better, we replied. He would be asleep and wouldn’t feel a thing.
Jack patted his head, as he did now, now that he knew something was wrong. “I think it’s fine, but...”
He dithered, scuffed his shoe along the path.
“But what, Jack?”
“It’s difficult sometimes, in school, to think.”
“Yeah?”
“We did sums today with Miss Jackson and I...” His words trailed off.
“And did you find it difficult?”
“Yeah. Adding up and doing sums and...and... I had forgotten my numbers.”
“Well,” I said, putting my arm around his shoulders. “Adding up is difficult. You’ve not been doing it long.”
Jack nodded and looked up at me with his pale blue eyes. “We did letters, as well, and I got a sticker.”
“Really?”
“Yeah, look.” On the lapel of Jack’s coat, there was a small star that said Good job! “I put it here so it won’t get broken.”
“Well done. You’re doing really well, Jack. And don’t you worry about school, because we’re going to take all the injuries away, okay?”
“In the hospital?”
“Yes, in the hospital.”
“And I’ll be asleep? They’ll take away the injuries when I’m asleep?”
“Exactly, beautiful.”
Jack beamed. He was excited about staying overnight in the hospital.
“Daddy, will I be there for a long, long time ago?”
I smiled, pushing his hair out of his face. “No, just a few days, the doctor said, maybe a week. And, Jack, you don’t have to say a ‘long, long time ago.’”
“Why?”
“Because you don’t need it. You can just say a long time. You don’t need to say the ‘ago.’”
Jack di
dn’t look convinced. “But in the stories they always say ‘a long, long time ago.’”
“Right, but...”
Jack looked up at me and fluttered his eyelashes.
“Never mind, son,” I said, pulling him closer to me.
We walked back through the heath toward home and Jack seemed content but solemn, as if something was on his mind. He was narrowing his eyes, the way he did when he was trying to solve a puzzle or do one of his jigsaws.
“Daddy, will I get better, after I’m in the hospital?” he said suddenly.
“Of course you will,” I said, smiling cheerily at him. “That’s why you’re going to the hospital, so they can make you better.”
Jack looked up at me, but then bowed his head again, as if he was watching where he was walking.
“Daddy,” he said, looking down at his shoes. “You know Jamie Redmond?”
“I don’t think so.”
“He’s in my school. He’s in first grade, but he does some of his lessons with us.”
“Is he your friend?”
“Nooooo,” Jack said, stopping on the pavement, as if I had just said the most preposterous thing. “Jamie Redmond isn’t friends with anyone!”
“Oh. Well, you be nice to him if he doesn’t have any friends.”
We walked in silence, and I could tell he was thinking about something.
“So why did you mention this Jamie Redmond?” I asked after a while.
Jack thought for a moment and looked sheepish, as if he was in trouble. “Because Jamie Redmond said I was going to die. He said I had an injury in my head, and everyone with injuries in their heads dies.”
Jack didn’t sound perturbed, as if dying was of no consequence, like falling asleep or finishing early at school.
“Well, Jamie Redmond doesn’t know what he’s talking about. You’re not going to die, Jack, and you’re going to get better. Okay? He shouldn’t be saying things like that.”
“It’s okay, Daddy, I told him he was a silly-billy,” Jack said. “I told him that everyone dies one day, and everyone knows that.”
“Good,” I said.
“Actually, Daddy, there’s lots of things Jamie Redmond doesn’t know. Maybe that’s why he’s in first grade, but he has to do our lessons.”
I sniggered a little. “You didn’t say that to him, did you?”
“Noooo,” Jack said.
“Good, because even if he’s mean to you, you don’t want to be mean to him.”
Jack nodded. “I didn’t say it to him because Jamie Redmond is very big, and he hits people. He’s even bigger than you, Daddy.”
“Good,” I said, squeezing Jack’s shoulder. “Is he bigger than the Incredible Hulk?”
“Don’t be silly. Nobody’s bigger than the Incredible Hulk.”
* * *
Dr. Flanagan’s office couldn’t have been more different to Dr. Kennety’s, with its high Georgian ceilings and oversize antique furniture. Dr. Flanagan’s office looked like a children’s ward, with painted murals and tiny furniture and a play corner with a ball pit tucked inside a large alcove.
“Hello,” Dr. Flanagan said, coming out into the waiting room. In her yellow smock and bright orange Crocs, she looked like a preschool assistant. Don’t let her appearance deceive you, Dr. Kennety had said. Julia Flanagan was the best in the business. We had read about her online. Parents called her a miracle worker: the pioneering brain surgeon who had dedicated her career to saving children’s lives.
“And this must be Jack,” she said, as she led us into her office. “I like your T-shirt,” she said, pointing to the bats flying around the dinosaur’s head. Jack blushed and smiled.
Dr. Flanagan turned to us as we sat down. “Before we start, one thing for Mom and Dad.” She suddenly seemed very businesslike. Don’t let the smock and Crocs deceive you, people said about her on Hope’s Place. She was blunt, did not have much of a bedside manner, but she would do everything for your kids.
“I’m sure you saw it on my website, but I have a rule. I don’t allow any of my consultations to go over twenty minutes, and I’m a brutal timekeeper. It’s very important for me to keep to this. That way I can see as many patients as possible.”
“Yes, of course,” I said. We had read about her strict appointment times. People on Hope’s Place said she would cut them off midsentence, pointing to her watch.
“Good,” she said, turning to Jack. “Now, I’ve got some lollipops in my desk. Would you like one?”
Jack nodded nervously.
“I thought you would. But to get it, you have to help me, okay?”
“Okay.”
“Right, Jack. Can you close your eyes and count for me, from one to as high as you can go?”
Jack closed his eyes and started to count. “One, two, three, four...” He had been able to count to twenty since his third birthday, but now when he got to eleven he paused. “One and two, one and four,” he said and then stopped, looking ashamed as if he had done something wrong.
“Well done, Jack, good boy,” the doctor said. “Now, can you come around here and try to find the lollipops? They’re in my desk somewhere.” Jack walked toward her and started looking around the desk, touching Dr. Flanagan’s paperweight, her calendar. She was watching him intensely, how he walked, what he did with his hands.
“You’re very close now. Maybe it might be somewhere here?” she said, opening up her drawer.
Jack’s face lit up when he looked inside. “Wow, there’s so many.”
The doctor reached into the drawer and held out a red lollipop. “There you go. Now, can you tell me what color it is?”
“Red,” Jack said quickly.
“Excellent,” she said. “Now, can you remember what we call these? What is this, Jack?” she said, holding the lollipop under his nose.
Jack looked at the lollipop, thinking it might be a trick question. “It’s a lollipop.”
“Well done,” Dr. Flanagan said, giving Jack the lollipop. He beamed and put it carefully into his pocket.
“Now, Jack, can you see this line?” She pointed to a taped line on the floor covered with little fish stickers. Jack nodded. “I want you to walk along the line, okay?”
Jack didn’t move. He looked at Anna and me for encouragement and we smiled at him, urging him on. He dithered, chewing his fingernails, and it was as if we were asking him to walk along a precipice. Finally, he slowly started walking, but he couldn’t keep straight, weaving his way along the line like a drunk.
“Well done,” the doctor said. “Now, the last thing. Can you stand here, Jack?” She touched him gently on both cheeks and then examined his head, the little bumps that had appeared under his skin.
“Wow, you’re an amazing little boy. Would you like to go and play with Suzie out in reception?”
Jack didn’t move, looked nervously at me and Anna.
“We have a PlayStation,” the doctor added, “and no one’s playing right now.”
“Really?” Jack said, his eyes lighting up.
“Really,” Dr. Flanagan said, and she held out her hand and led Jack outside.
“It always gets them,” Dr. Flanagan said, when she came back to her office. “My nephew has one, and it’s like we don’t even exist half the time.” She looked at her watch. “Right, we have eleven minutes left. So I have looked at all the scans and the reports, and I do agree with Dr. Kennety’s and the radiologist’s assessment. It almost certainly is an astrocytoma. However, looking at the shape on the images, I think the tumor might be a little more advanced.”
I felt breathless, like that first meeting in Dr. Kennety’s office. Despair in the pit of my stomach, like feeling homesick as a child. “So it could be a more advanced tumor? A glioblastoma?” I asked, my voice shaking. I had read about glioblastomas on Hope’s Place. They were the astrocy
toma’s uglier cousin, a tumor so complex, so aggressive it could kill people in weeks.
“No, I don’t think so,” the doctor said, picking up one of Jack’s scans from her folder. She typed something on her computer and then turned the screen toward us. “That’s what glioblastoma looks like. There, you see all those white areas around the outside. Now compare that to Jack’s.”
We looked at the image. There were no white parts, just an amorphous black blob.
“No, I’m almost certain it’s an astrocytoma. It just might be more advanced than we thought.”
“And could that affect Jack’s prognosis?” Anna asked.
The doctor paused, which was unusual for her. “It could, but I don’t want to speculate or talk numbers until after the surgery. Believe me, I do understand the need—your need to know—but really, it doesn’t help anything.”
I wanted to say something, but my vocal cords had seized up. Dr. Kennety had said 80 or 90 percent. He had said that Jack would be cured.
The doctor looked at her watch. “Right, time is getting tight now, so how much did Dr. Kennety tell you about the operation?”
“A little,” Anna said. “We’ve both read up on it since. He gave us some handouts.”
“Good,” she said. “So the goal is to remove everything. That’s the best chance of a cure for Jack. And from looking at the scans, the location isn’t toooo bad, although I am a bit worried about this part,” she said, pointing to one of the shadows.
I felt that fog descend again, the sense that I was here but not here, that I was floating, looking down on myself. I had been secretly hoping for good news from Dr. Flanagan, that the tumor was in fact benign, or that it wasn’t a tumor at all. I wasn’t expecting to hear that Jack’s prognosis might be worse.
A faint alarm beeped from somewhere within Dr. Flanagan’s desk.
“I know it’s easy for me to say,” she said, as she was showing us out, “but please do try to stay positive. These are very survivable tumors, and there’s a reasonable chance that we’ll get it all out and that will be it. Please try to remember that.”