May 21, 2016

Posing with my guinea pigs

One of those priceless opportunities where a friend can take pictures of me with my guinea pigs.

I don't care how un-guineapiggy I am. 

My friend said he'd picture me better with a sloughi on one hand and a Tibetan mastiff on the other. If I ever am to seek breeds instead of strays and spontaneous encounters with pets, I will take it into consideration, but with my history with animals, I already think I will go for the stray ones and the spontaneous encounters. The first guinea pig I adopted was a solitary grandpa ditched by his owner. Those were the last in the first petshop I found on the way.

My guinea pigs are almost four months now and still growing. Going on a trip with them proves exhausting, especially for week-ends at the parents. But all in all, when we're waiting for dad to come pick us up, we get the leisure of playing in the forest near my workplace and it is not an opportunity I can always provide to those lovely patient and fluffy creatures.

If I am to go abroad, I am definitely taking Zishlaw and Cauchy. 

May 19, 2016

DIPG : A Story From HONY

(2/2) “You have to have faith and keep working. Back in the 70’s and 80’s, all of us were hoping for just a single survivor of stage four neuroblastoma. It was a rare cancer and we just couldn’t cure it. But eventually we figured it out. Recently over five hundred people attended a party we threw for neuroblastoma survivors. So change does happen. It just happens slowly. I have a colleague who lost hope recently. He’s been working on a brain tumor called DIPG, and he’s had nothing but three decades of negative outcomes. Dozens and dozens of failed trials. We just couldn’t touch the tumor because it’s in the main center of the brain. But my colleague stayed optimistic. He kept cheering us on. But he finally lost hope. After three decades of losing kids, he asked to not see any more DIPG patients. Then guess what happened. We finally have a survivor on our hands. Our neurosurgeon Dr. Souweidane figured out how to insert a catheter directly into the tumor. And we now have a girl that is 3.5 years from diagnosis. It’s still early, but it’s promising. She plays tennis. She plays violin. And she is gorgeous.”
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“I’ve been on a mission for seventeen years. It’s my holy grail. I’m trying to cure a brain tumor called DIPG that kills 100 percent of the children who have it. It only affects 200 kids a year so it’s never gotten much attention. But if you saw a child die from DIPG, you’d understand why I care so much. It’s awful. It’s just awful. Parents come to me in droves asking me to help. They say: ‘This can’t happen. Please do something.’ But there’s nothing I can do. Their child will be dead in a year. It’s horrible. It’s been a very tough thing to care about. I didn’t get into neurosurgery to watch kids die. I chose this job to heal people. And DIPG has been seventeen years of watching kids die. It’s a very dark place to work. But if I can find a cure, so much of that pain will be paid back in a single instant. And on that day I will feel like there has been some justice.
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When I first started working on DIPG in 1990, I thought: ‘I’ll figure it out in two years.’ That was before I had gray hair. I had no money. My office was the size of a closet and I was buying my own rats. But I was so optimistic. I had no idea what was facing me. There were so many hurdles I didn’t see. Everything was new. I never had any experts I could call or articles I could read. I had to figure everything out on my own. From a surgeon’s viewpoint, the tumor is unforgiving. It infiltrates the brain stem. Everything your body feels or experiences passes through that stem. You can’t violate it with a knife. It’s futile to even think about. So I had to figure out how to insert a catheter through the brain, and inject chemotherapy directly into the tumor. There is zero room for error. These chemicals must only touch the tumor. If you miss the target by a couple millimeters, it can be fatal. Brain surgeons aren’t artists. There isn’t much room to be creative. The innovator in neurosurgery is under a great deal of pressure. We must invent without being too imaginative. If we stray too far from our ancestors, it could lead to death. In May of 2012, I finally got approval to conduct a clinical trial. A family flew up from Florida with their child Caitlyn. I was so nervous. I’d written so many elegant papers. I’d conducted so many trials on mice. I’d done so many tests in the lab proving that this could work. But here I was looking at a human child. Am I really ready? The spotlight was unbelievable. If I kill this child, it will decimate me emotionally. And the institution’s reputation was on the line. Had I done enough? Had I prepared enough? All these things were running through my mind as Caitlyn’s mother signed the consent. But when she finished, she turned to me and said: ‘Whatever happens, thank you for trying.’ And I still get emotional when I think about that. Because she took so much weight off me. The operation was a success. This is Caitlyn a week later. She could walk! She could jump! She could touch her nose! She lived for a year after that, but then her cancer came back and killed her. It was so hard for me. I was so close to her family. But right now I’ve had about twenty successful trials. That’s twenty living children. One young woman has been alive for three years. Every passing day that those children are still alive is the greatest day of my life. My childhood was building things: model rockets, model cars, train sets, airplanes. And I didn’t just build them. I focused on every detail. I hand painted every letter on the train. I sanded the wooden ribs of the airplane until everything was so precise and fit. And it felt so good when that work was finished and appreciated. It was the same drive that brought me into neurosurgery. I loved fixing things. And I had always been successful. To get to be a neurosurgeon, I had to succeed on so many levels. I’d become accustomed to success. But I finally found something I couldn’t fix. All my DIPG patients were dying. It was failure beyond failure. Kids were dying because I’m not good enough at this. And they don’t deserve it. And neither do the parents. It’s so hard to face these parents. They’ve envisioned everything that’s going to happen to their child from the day they were born: the first girlfriend, the first job, the first homerun, the first time tasting meatballs, it’s infinite. And they come into my office and, ‘Kaboom.’ All of it disappears. It’s horrible. Seeing their faces. It’s beyond abominable. I just can’t take it. I’ve got to stop these kids from dying

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(3/5) "There was a tumor in his brain. The doctor told us that he knew what it was. He said it was called DIPG and that he hadn’t found anything that worked. He said it would eventually kill him. And I started screaming. And I asked how long. And he told us a year. He told us that ‘doing nothing’ was an acceptable choice. And he said, ‘This will be harder on you than it is on Max.’ And I remember looking at Max. And he was so beautiful. All he had was that crossed eye. Our life had been beautiful and now everything sucked. I didn’t know what to do. So we went to the Lego store. He was obsessed with Legos. That night he got so many Legos.” ---------------------------------------------- Today is the last day of our fundraiser to aid Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Nearly 60,000 people have donated and we’ve raised over $2.2 million so far. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. (See previous story). I promised Julie that all money raised during the telling of her story would be given to Dr. Souweidane and his colleagues to aid in the fight against DIPG. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating. Link in bio.
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(4/5) “I think I have post traumatic stress. I have so many horrible flashbacks. Two weeks after Max was diagnosed, he asked me if I’d be his Mommy forever. I said, ‘Of course I will.’ And he asked: ‘Even when I’m ninety?’ And I told him ‘yes.’ What was I supposed to say? And there were all the times he talked to me about the future. We’d talk about college. I just couldn’t tell him. God I was such a coward. I should have told him. I just couldn’t do it. Even toward the end. The day before he lost consciousness, I read his favorite book to him. It’s called Runaway Bunny. And the little bunny keeps threatening to run away. And the Mama bunny keeps saying: ‘Wherever you go, I will find you.’ Oh God, it was such a horrible way to die. He couldn’t speak or move or swallow or see. He basically starved to death. And the whole last week I’m whispering in his ear: ‘Let go, let go. Please Max, let go.’ My seven-year-old son. I’m telling him to let go. I mean, fuck. That’s not supposed to happen! And the whole time I never told him he was dying. I was such a coward. But he knew. He knew without me telling him. Because a couple weeks before he lost his speech, he asked me: ‘Mommy, do they speak English where I’m going?’” --------------------------------------------------------Today is the last day of our fundraiser to aid Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Over 65,000 people have donated and we’ve raised over $2.3 million so far. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. (See previous story). In fact, Max was supposed to be part of Dr. Souweidane’s first clinical trial but he passed away too soon. I promised Julie that all money raised during the telling of Max’s story would be given to Dr. Souwedaine and his colleagues to aid in their DIPG research. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating. Link in bio.
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(5/5) “I used to be a really happy person. I really was. I was the person who would walk outside and say: ‘Isn’t everything beautiful? Isn’t life wonderful? Aren’t we so lucky?’ I don’t have that sense of joy anymore. I remember the Mother’s Day before Max was diagnosed. It was four years ago. We were in this same park. On the lawn over there. It was beautiful. All three of us were there. Irene and I were in love. And Max was lying on my feet and pretending to fly in the air. And he was laughing so hard and I remember feeling so happy and full of life. It was the last moment that I truly felt joy.” ------------------------------------------------------- Today is the last day of our fundraiser to aid Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. Over 70,000 people have donated and with over $2.6 million has been raised so far. Max’s tumor is the same tumor that Dr. Souweidane is working on curing. (See previous story). In fact, Max was supposed to be part of Dr. Souweidane’s first clinical trial but he passed away too soon. I promised Julie that all money raised during the telling of Max’s story would be given to Dr. Souwedaine and his colleagues to aid in their DIPG research. The gift will be given in Max’s honor. Even if it’s a small amount, please consider donating. Link in bio.
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Over the past two weeks, 90,000 of you donated nearly $3.4 million to help fight pediatric cancer. That is a staggering amount of money. Thank you. For those of you who might not have been in a place to contribute financially, thank you so much for engaging with this difficult material. The support and solidarity you showed these families was just as valuable as the money itself. You are the most caring community of people on the Internet. That’s no exaggeration. It’s proven by the tone of every comment section. And it’s proven by the $8.5 million you’ve given to charity in the past 1.5 years. You are such a compassionate collection of people, and I can’t thank you enough for all that you’ve contributed to HONY. Lastly, thank you so much to Dr. O'Reilly and the Department of Pediatrics at Memorial Sloan Kettering for making this series possible. Special thanks to Nina Pickett and Rachel Corke, who paved every stone on my path. I’ve got one last story to leave you with. Last night you raised over $1 million in honor of Max to research and cure DIPG—the brain tumor that killed him. Dr. Souweidane tells me that this money represents the “single greatest leap forward” in his personal crusade against DIPG. When I interviewed Julie a few days ago, we were sitting on a bench in Madison Square Park that had been dedicated to Max. The plaque listed all the things that Max loved, and one of those things was ‘millions.’ I asked Julie what that meant. ‘Max’s uncle Charley gave him one hundred dollars,’ she told me. ‘And Max kept saying that one day he’d have a million.’ So thank you, everyone, for giving Max his million. I’ll be leaving the fundraiser up all day, for anyone who would still like to donate. Link in bio.
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May 18, 2016

Excellent

Moves. Idris Elba. Diversity. Tunes.


May 17, 2016

I don't know what else to do at this point

There's a calling voice colouring the sky in vermilion
The falling rain goes on for miles and miles

There's the voice crying like an angel
Which grows a thousand dreams in the silent night
2)
There are the sons standing like warriors
They kept the sun on their fists and endured the suffering days

"May you have a future ahead"
There's the voice wishing and singing
Which sleeps within the belief

LOVE SONG blooms as flowers
LOVE SONG blows as a wind
LOVE SONG rises as waves
LOVE SONG cries about people...

3)
"May you have good fortune in the furthest sky"
There's the rain shining all over you

There's the voice calling like an angel
Which counted the woven days colouring the vermillion sky

LOVE SONG blooms as flowers
LOVE SONG blows as a wind
LOVE SONG rises as waves
LOVE SONG cries about people...

Band of Parents and Grace's Case: a HONY Story

“It was one of the most despicable things I’ve seen in my career. It was ten years ago. There were about twenty families being treated here whose kids had Neuroblastoma. The survival rate was about ten percent. One of our doctors developed an antibody that he thought was promising. But he’d run out of money. So he called a town hall meeting of sorts. He brought all the families together and told them he needed two million dollars. And they told him: ‘We’ll find it.’ We refer to them now as the Band of Parents. These people were desperate. Many of them were broke. And this burden was being placed on them. It made me sick. But they went back to their communities. They baked cookies, and organized bike rides, and held fundraisers named after their children. And they raised the money. All two million. And it worked. Dr. Cheung’s antibody worked. Today the survival rate is sixty percent. But it was so sad. Because deep in their hearts those parents knew the antibody would not be ready in time to save their child. But they raised the money anyway.
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(1/6) “She came back from soccer practice one day, limping and crying. And we knew something wasn’t right because Grace is tough. The doctors thought it was a pulled muscle at first but when they gave her the MRI, they could see stuff in her bones. They said it wasn’t leukemia, and we thought: ‘Thank God.’ But then they told us it was neuroblastoma. Stage four, high risk-- as if stage four wasn’t bad enough, they had to add an extra label. I was so scared during our first meeting that I put a statue of the Virgin Mary on the table. I thought maybe it would protect us. The doctors started going through the treatment plan. They told us percentages but I didn’t want to listen. They might know about cancer but they didn’t know Grace. So I didn’t want to hear it. Two weeks after the diagnosis, a friend wrote Grace a really nice letter of encouragement. It basically said: ‘I had stage two cancer, and everything turned out just fine!’ Grace folded up the letter, and asked me: ‘Mom, what stage do I have?’ And I told her: ‘Four.’ And she said, ‘How many stages are there?’ I wanted so bad to say: ‘One hundred and fifty.’ But I had to tell her the truth.”
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(2/6) “The radiation was so strong that I couldn’t sit next to her for two weeks. But Grace handled all her treatment so well. She named her new dog after the chemotherapy medicine. She’d walk through the lobby of the hospital, and she’d see kids who’d lost limbs, or had brain surgery, and she’d say: ‘I’m so lucky.’ But when the treatment was over, the doctors did another scan, and nothing had changed. They told me: ‘We’re no longer treating her to cure her.’ In the beginning they were so optimistic. They were telling me about all these options and all this stuff they were going to do. And now they were telling me to give up. And I’m looking at Grace. And she looks OK. She looks strong. She doesn’t look like the girl that I’m reading about in these medical charts. But they’re telling me to give up on her. They’re saying our goal is to keep her as comfortable as possible. Keep her comfortable? What do you mean? What are you trying to say? I’ll never forget that day. The doctor told me: ‘Let’s not worry about this afternoon’s appointment. Go home and have some fun.”
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(3/6) “I wasn’t going to give up. We tried taking Grace to another hospital but they told us the same thing: ‘There’s nothing we can do.’ But then we brought her to Sloan, and they told us: ‘We think there’s one more thing we can try.’ It was an experimental antibody called Humanized 3F8. It triggered Grace’s immune system to attack her cancer. It was so painful. It felt like she was getting a root canal over her entire body. After two rounds of treatment they did another scan. They wanted to see if there was any progress. The therapy was so painful that if it wasn’t working they wanted to stop. They called me in the office to give me the results. They told Grace to wait outside. I was so nervous. I could barely stand. When I walked in, nobody was saying anything at first. I thought: ‘Oh, God. They don’t want to tell me.’ Suddenly they said: ‘This is amazing. It’s never happened before.’ And they held up her scan and the cancer was gone. It had been everywhere: her pelvis, her skull, her bones, her arms. And now it was gone. All of us started crying.” -------------------------------------------------------- You may remember the post from a few days ago that told the story of The Band of Parents, who raised $2,000,000 to fund the development of an antibody. Humanized 3F8 was that antibody. Grace’s life was saved through their efforts. Right now we are holding our own fundraiser to help the team at Memorial Sloan Kettering Cancer Center in their fight against pediatric cancer. As you can see, this research saves lives.
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May 16, 2016

On the Alienation and isolation engendred from the notion of "Cancer"

“Cancer engenders immediate fear. I think that deep in our soul, we don’t want to admit to the possibility that we might have it too. So when someone else gets cancer, we turn that person into an ‘other.’ If that person is ‘other than us,’ then maybe it won’t happen to us. For the past thirty years, I’ve done everything I can to keep children from feeling like an ‘other.’ Yes, this child has cancer. But this child is a normal kid. Alongside their illness, they are dealing with demons that the average adult has never faced. So not only must we heal them, we must also never let them feel ‘less good’ or ‘less worthwhile.’ Because if we disrupt their ability to relate to the world, then the cancer will define the rest of their life.” ----------------------------------------------------------Over the past eight days, we’ve raised over one million dollars to help Dr. O’Reilly and his team at Memorial Sloan Kettering Cancer Center fight pediatric cancer. While most of the money will go to crucial research, one-third of the funds will go toward providing the psychosocial services that treat the ‘whole child.’ If you haven’t already, please consider donating. Link in bio.
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May 15, 2016

The longer I study cancer, the more I’m in awe of the healthy child

“Twelve thousand kids per year get cancer in the United States. But the extraordinary thing isn’t that cancer happens. The extraordinary thing is that cancer doesn’t happen more often. Every human life begins with a single cell. Trillions of cells will form from that single cell. During this process, the DNA will rearrange itself hundreds of times to form all different types of cells: muscle, nerve, bone, blood, connective tissue. If you look at these cells under a microscope, each one has special properties. They all have codes that tell them exactly what to do and exactly when to stop doing it. The complexity of this is extraordinary. There are numerous fail-safes at every level to prevent mistakes. How is it possible that it ever works correctly? There are trillions of chances for something to go wrong. God, it’s unbelievable. The longer I study cancer, the more I’m in awe of the healthy child.”
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May 5, 2016

On The Loop


May 3, 2016

TOLKIEN FTW