Showing posts sorted by relevance for query joey. Sort by date Show all posts
Showing posts sorted by relevance for query joey. Sort by date Show all posts

Thursday, April 4, 2013

A Note From Joey's Dad

3-D mold of Joey's thumbprint

It cannot have been just last November that Joey Keller died.  It was such a prolonged agony, in the most basic of the etymologies of agony, that my mind had hid it away.

When I don't get a CaringBridge update notification for the children I follow there, I tend toward hope and don't think much about them.  When we drive by the local huge Children's Hospital here in Tête de Hergé -- where there are only tonsillectomies performed and broken bones fixed with psychedelic splints and casts -- I do remember them, back in that other world where kids get cancer and sometimes die in the middle of their youth.

I confess to looking at pictures of Daisy Merrick rather frequently, but for the smile she brings. None of us are naive enough to avoid our private picture book of what she must have looked like at her end, and no reassurances by preacher men and preacher women, even when they are that child's parent, can fool me. I've seen Death.  So have you.  But those are the pictures we've been given as fodder for the dark.  Daisy was, when vibrantly alive, nothing but light.

Anyway, Joey's Dad just about drove me insane in Joey's last months.  How dare he?  A man with scientific gleanings and leanings, he was, and will be again, a believer in miracles.  L.I.T.E.R.A.L.L.Y.  To such an extent that I prayed for Joey to please die.  I did that once, because as you know, that's the extent of my praying -- if, in the great crap shoot, he's aware of such needs; if, indeed, such needs even matter, then praying once to omniscience and omnipotence ought to square things.

I don't believe Joey's Dad ever slept.  He kept on working, too, for many reasons, I imagine, insurance coverage likely topping the list.  But his devotion almost bordered on abuse, to me. To me, I say.  He was pure love to his son and his son reflected pure love back, but you could also see in his wizened yellow face that he had had it.  But they clung, so... Well, isn't this an old tired story?

Anyway (the best of segues), he posted something tonight on CaringBridge and I want to pass it on, for those of you who may have followed Joey's story at the reserved distance of an odd blog.  Note that you don't hyperventilate while reading him.  Note that he's in a place I cannot imagine -- but then I cannot imagine any of the places he has had to traverse in the last five, six years.

I wrote him a comment, something I rarely do on CaringBridge, particularly when the parent or person blogging there is very religious, as my propensity to say something perceived as uncaring becomes an insulting danger that I just don't want to risk.  "You write well," I said.  I told him that I hoped he would keep at it.

Of course, this was also a ploy to not have to go to Facebook to follow the foundation doings that are getting underway in Joey's honor (Legos, what else!?).  I hate Facebook like I hate telephones and their bad news and their insinuations, like I hate the noise of the mall.  I prefer CaringBridge and the illusion of intimacy.

Nick, the dad in question, has shortened Joey's "Story" on CaringBridge to this:

 Joey lost his battle to medulloblastoma November of 2012. I wish I could list the stories and testmonies of all of us that were inspired to live better because of watching Joey's short life. His positive attitude was contagious and he wanted to encourage everybody he came into contact with. He inspired Elizabeth and me, more than words could ever say. Joey's attitude, faith, and generous spirit lead to the creation of TEAM JOEY, a not for profit (501c3) organization dedicated to getting Legos into the hands of every child battling cancer, and funding research to END pediatric cancer, once and for all. See link below:
http://www.HeroesFoundation.org/Programs

And of the many fantastic photographs they captured of their son, Nick and Elizabeth chose this one to head the new page:


This is what Nick blogged about today, and, again, if anyone wishes to hook up with CaringBridge, it's an easy site with which to register --

touch base-
Written 2 hours ago
 
I'm not sure if anybody reads this anymore.  Many have told me they miss us sharing and asked that when we had a moment, to share a few thoughts. The support and prayers we got from this site (all of YOU), when we were going through the darkest and ugliest experience I could have ever imagined, was unbelievable.  We jumped on tonight for several reasons, the main one being to thank you all for your prayers.  Throughout Joey’s battle, when we got good news, you were there, praying and celebrating.  When the doctor said, "It's all over his brain again," you were reading and following…and praying.  And even as Joey suffocated in our arms, you were praying for Elizabeth and me.  Thank you.  Even now, we read messages from those who understand...who get it.  The pain doesn't go away.  It just doesn't.  Elizabeth and I were talking the other night that we don't think we'd ever want it to.  It's the most unbelievable dichotomy.  To remember him (which is at least every 5 minutes) brings incredible joy and memories that are so good…I get caught in public thinking of him...and smiling....and then intense, searing pain through your heart.  He is gone.  How did this happen?  Our son, our life in so many ways is gone.  We were at dinner with some really amazing people the other night, and we were explaining how it really wears us out to hear people give the typical pat answers, albeit maybe true comments, just not necessarily encouraging ones.  Our friend at dinner said the pain and loss you feel is proportional to the love you had for him.  I do feel bad for the people who just don't understand why we can't just move on, suck it up, and “get to work on God's calling for our lives.”  Not sure they'll ever get it.  When you love someone, really love someone, you give them your heart.  Your commitment to always be there for them, to ALWAYS do what's in their best interest, and to never leave them or forsake them. I wanted nothing in life more than to be a dad.  A good dad.  You wouldn't believe the books I had read, before and after Joey was given to us (born)....the small group studies at church on fatherhood I had gone to...the literally stacks of journal notebooks I have in my office, filled with my handwritten notes from books by Eldridge, Morley, and Dobson, on how to be a dad that God will be proud of.  Nobody wanted to be a good dad and took the job more seriously than I did.  I can say from seeing it first-hand, no one wanted to be a great mom than my wonderful wife.  Why did this happen?  How?  Of course, there is some solace in knowing where he is and that he can't suffer any more.  And we know we'll see him again.  Certainly, knowing how happy he must be in heaven makes us smile.  But we are here.  This is now.  And as long as I'm alive, I'll be without my son.  My family tells me that when I was little, I was always laughing and having fun. That every picture in our albums from childhood shows a big smile on my face.  I do love to have fun and always have pushed the envelope when it comes to pursuing it.  My body has the broken bones and neck, a four level spinal fusion, and scars all over to prove it.  I told a buddy of mine the other day, when trying to explain how I felt (he asked), life just isn't fun anymore.  The joy is gone.  Oh, I can put on a happy face with the best of ‘em, but on the inside, we are still very torn up. I am not too proud to ask for your continued prayers. 
I changed Joey's "My Story" on this CaringBridge site.  Elizabeth's been after me to do this for some time.  We are excited about TEAM JOEY and the kids who are and who will be touched because of Joey’s amazing heart and vision.  We did our first "Lego give" at Peyton Manning Children's Hospital a couple of weeks ago, and RileyHospital is next week.  We are excited.  Joey would have LOVED shopping for the kids, handing out the sets, visiting each room, and praying for the kids. He was so much younger in “years lived” than I am but about 50 years older than me in spiritual maturity terms.  What an old soul. 
I also wanted to let everybody know that, as far as updates for TEAM JOEY and Heroes Foundation, you can find us on Facebook.  We don't have to be Facebook friends for you to "like" the TEAM JOEY Facebook page and receive that latest updates.  I know there are some circumstances, HIPPA considerations, professional restrictions, and other good reasons where people can’t be FB friends, you can still plug in to the TEAM JOEY page. We are contemplating a TEAM JOEY website; but frankly, most people communicate and get a large part of their social information and interaction from Facebook.  I think, all Facebook asks for is just an email address.  And they never send you anything.  It's about as safe as could be, YOU control what is shared.  Get an account, and follow TEAM JOEY on Facebook! Look for: “TEAM JOEY, A Heroes Foundation Program”

Many have told me that I should continue to blog on here.  It got me through some really difficult times, and I'm sure would prove therapeutic now.  I gotta be honest, I wasn't gonna say all that tonight; I was just going to sort of point everyone to the new Facebook page.  We'll see how things go moving forward.  Living without Joey is really tough.  Some really thoughtful families and friends invited us over for Easter.  For several reasons, we just wanted to kind of hole up and rest and shut the world out on Sunday.  We started off strong, then there were TV sermons and shows about Easter, and then the memories of past Easters...nine of them…and I found myself sitting alone on the couch, holding an 8x10 of him, just blown away...he is really gone. This is permanent.  I can’t hug him, or rub his bald head, or talk to him, or hear his laugh or him singing the Ninjago song. We used to have some of the most amazing talks. He would ask me questions that were so complex and deep, that I swore I was talking to an 80 year old man.  All that said, I AM grateful for Easter because it is truly the hope that I have that I'll see my buddy again.  I would be lying, however, if I told you it was a good or easy day for us.
 
In a day and age where everybody’s selling the illusion of control, I knew this posting wasn't going to inspire anybody.  But I had to be honest, and I do thank you all for asking about us, for asking us to continue to share our journey, and, most of all, giving us the space and grace to grieve.  We do, still, have MUCH to be thankful for.  At the top of our list is all of you.  Talk soon!


Thursday, October 11, 2012

Joey, Lego King, is Home!





From Nick's latest CaringBridge journal entry:


Finally home! (iPhone)Written 8 hours ago 
Joey is so happy to be home. Thank you all for your kind words and prayers. We are finding out what all the nurses were so busy doing, whirling around him, running in and out, changing tubes, syringes, etc. wow. There is much to do. Around the clock. But wouldn't change it for the world. He keeps thanking us for getting him "all these Legos". Many of them look brand new to him. A lot of it is coming back to him. I was telling the Dolans (neighbors that were kind enough to have dinner waiting on us when we came home tonight) that as long as we tell Joey something he forgot, and he doesn't forget it again, we are OK. Doctors said that is just a software issue. If we have to keep telling him and telling him and telling him, it's a hard drive problem and much more significant and potentially permanent.  
Thanks for your prayers that have helped make this happen. We have much to be thankful for. It's interesting, he is looking at all these Legos like he's never seen them before in his life. And it makes him so happy and thankful. He's giddy and keeps thanking me saying he'll never ever want to buy another Lego set again because "all of these!" What if we all did a mental "reset" and looked at all of our blessings like that in the morning, and were just overwhelmed with thankfulness and happy with what we have. Joey's the happiest I think I've ever seen him. Might work for us too. What a perspective adjustment. Just a thought. :) Joey teaches me to be thankful every day.

In case you haven't been following the Joey Keller thread here on elle est belle la seine la seine elle est belle, this is how things were just a week ago:


Back on October 2, Dear Reader TAM wrote this comment, when Joey was probably at his lowest point and things were looking quite grim, in an immediate sense:


I read the blog. My god, that poor child. I am so sorry for the parents too, but why do they continue to put him through this? Why is the medical profession not counselling them about when enough is enough, and hospice is appropriate? That poor boy.
TAM

I post this comment not to go "nya nya na na na..." but to do a better job explaining.  Joey and his parents are quite savvy medically, and know that he will not survive this recurrence of medulloblastoma, particularly since it is encroaching on the brainstem and choking sections of his spinal cord.  They know that any moment might be his last, just by the rude movement of one cancer cell.  There is no dissonance in them when they juxtapose their faith in God with their faith in the medical arts and sciences.  So long as Joey wants to fight, they will fight, and that fight will be ferocious.  In a sense, hospice has already begun, as palliative measures are at the forefront of their thought -- they don't wish their son to suffer.

Thus far, he is living, and is finding joy in it.  What has happened over the last several weeks is... and I so hesitate to use this word... miraculous.  Don't you think, TAM?

You know, I think I neglected to copy here the "My Story" blurb from CaringBridge, which sums things up so much better than ever I could:


Joey Keller is fighting multiple relapse medulloblastoma. We have a solid understanding of evidence based medicine, statistics, and thank God for modern medicine.  Moreover, we are so grateful for the doctors and medical staff that have sacrificed so much of their lives gaining the expertise and training that we are now benefiting from.  Having said all that, and not [finding it] mutually exclusive, we believe in miracles. YouTube video about Joey, below:



Friday, September 28, 2012

Joey Keller, Lego King of the World, Needs You RIGHT NOW

Hi all.  I went to bed worried about Joey, one of the four (okay, four "or so") pediatric cancer patients that I follow via the wonderful site CaringBridge.  You can go directly to his by clicking HERE.

His cancer, like every cancer, is a terrible one.

No, that's not true.  The first line of his "story" reads:  "Joey Keller is fighting multiple relapse medulloblastoma.."

He has one of the worst, but he has the biggest hunk of faith and derring-do that clearly comes from a slightly hyper father and a stalwart mom.  And his own joyful, humble little self, of course.  I forget sometimes how unique and -- sometimes for good -- alone these kids can be, despite the hurricane of activity whirling around them.  In their aloneness, they often develop god-sight and world-sight that puts adult vision to shame.

Such is Joey, Lego Kind of the World.

Last night, while his Dad was helping him take a bath, he suffered perhaps a stroke, perhaps a seizure, and became unresponsive.  At the hospital, he remained unresponsive, although he did begin to speak some, though what he was saying was incoherent.  He's in there, though, and that's the point.

They did a CT but really need an MRI.  He just had one recently, with fairly positive results in a very negative situation.  He has tumors of the brain and, almost more scarily, up and down his spine.

His Dad is in the allied health field (that's my impression) and is an avid amateur minister, investigator of God's promises, a tough friend to the deity.  He wears me out, frankly, and bless him for the drive to keep his Lord on his or her toes.  His Mom... she is balance, and I am sure she is sick of it.

I don't think anyone believes Joey is going to survive this cancer, and I hope his Mom and Dad won't reach through my computer screen with a wicked bitch slap.  But goodness, goodness, goodness, he deserves a conscious, peaceful death.  He deserves, they deserve, to feel connected to God, to feel that nothing has been left unsaid.

His Dad wrote, at some point during the night:  "He looks around a lot and seems like he wants to talk. We feel so bad for him. He's looking at me now, the light from hallway shining on our faces. I keep thinking my alarm clock's gonna go off, and ill wake up. or like less than 2 yrs ago, he'd walk up to the side of the bed and put his hand on our shoulders and gently rub our backs Till we woke up. This can't be real-"

So please, dearest readers, do what you do, so well, on Joey's behalf, and do it now.



UPDATE, 2 PM, 9/26/2012:  From Joey's Dad:  "Quick update. The meds needed to control Joey's seizures were stopping him from breathing. Very labored, and episodes where he would stop altogether. They moved us to ICU and intubated him for many reasons. They're gonna throw kitchen sink at stopping these seizures and on a ventilator they can't stop his breathing. Priority #1. We actually don't know if labored breathing is from the meds or the seizures. So gotta stop seizures. You know, I can't keep thoughts straight. Thx for prayers. As I get more info, I'll pass on so we all can be on same page with prayers. Thank you."

UPDATE, NOON, 9/29/2012:  "We just met with the lead ICU team, and wanted to get an update out on where we are at medically. I’ll try to remember all the details. She wanted to emphasize that the Joey we knew, with almost 100% certainty, will not be the Joey we see in the future. And without getting into all of the medical specifics, his brain has suffered so much trauma and injury, they think he won’t be at the “baseline” he was before the initial seizure in the tub. I want to mention too though, that the CT scan and EEG data don’t really show anything. They are going by the “posturing” we saw and some of the neurological deficits they see now. ALTHOUGH, they said in the first 24 hours (after incident or trauma) they always see patients getting worse. After that, we have about 4-6 days to see improvement (no guarantees of any improvement, or could see dramatic recovery, they really don’t know, medically.) They think after the first seizure, his sodium crashed and flushed fluid out of his brain, thus the posturing (and potential for brain damage/death.) This is really concerning. I was standing over him, alone, praying actually, when he went into that modeling pose and to think I was watching the fluid being flushed out of his brain, and possible assault to his brain makes me sick. SO, the fact that the CT scan and the EEG don’t show anything huge (like massive brain bleed) is a positive thing. Also, he pulls away from pain, pupils respond to light, he has been stretching, sometimes will open his eyes, heart rate goes up every time I talk to him, all are really good things. On the other hand, while the drugs he’s on are sedating, we found out, not so much that he couldn’t be waking up (over time, don’t know how much, but slightly concerned it hasn’t happened yet) pulling at the vent, irritated, etc. concerns them. But it could be too early to tell. She really didn’t know much, and we told her appreciated her saying that, other than he won’t be the same Joey we knew…but didn’t say what that would look like etc. Physically? Mentally? Or to what extent we would see those deficits."


Thursday, October 4, 2012

joey is OFF the vent!

i hope most of you have subscribed to joey keller's caringbridge page, so that you are able to get updates as fast as they come.  but if you haven't, allow me to steal a couple of nick's latest entries.  get ready to do your happy dance... oh, and look at this face unencumbered by intubation!  soon, i hope, he'll be done with the feeding tube, and won't be so terribly exhausted.  joey, we're so proud of you, kiddo...





TEAM JOEY
Written 7 hours ago

Your services are required. :)

We were able to get a room downstairs at the Ronald McDonald (in house) House, and I insisted that Elizabeth go down there and sleep. For the first time a week, or however long we've been here, she did. She set her alarm for 2:30a and came up for us to switch, and I told her I was feeling good, loving the time with J-Dogg, and to go back and sleep. She did. He dozed off around 5a and when she came in the room this morning around 7:30a, I was snoring like 350 lb. WWF wrestler after a night of hard partying. I have never gone w/o sleep like this. I'm seeing life in a WHOLE new way. LOL.


OK, here's the latest, we need your prayers. We have noticed that all the times Joey stops breathing, are after and closely associated with sneezes, coughing, and yawns. Unless you are his parent, and sitting next to him and studying him like we do, you would just think he's "failing" the CPAP tests they do. Although, he's done pretty well overall. The neurology team was so positive yesterday and cannot believe his improvement, and began, like we were, thinking outside the box asking us if he sometimes has apnea at home. Does he breathe unusually deep, etc. We thought about it as objectively as we could, and have indeed seen him do that thing, where they take a huge breath and kind of shake upon "awakening" or realizing they need to breathe or whatever. He loves to take naps on the floor in front of the TV. So we help him lay down there, and we'll be watching TV over him, and HAVE seen him do that. We just thought it was him, and we are pretty sure he did that before all of this started. SO, they are willing to try extubating him based on our obvservations and his history. This would explain why he can breathe solid and textbook pattern, for like 4 hours, then they drain his tube (after coughing) and he holds his breath beyond the 45 seconds. Not to mention, his system has gotten used to the vent breathing for him, and evidently the body will sort of atrophy and grow to depend on the ventilator, get lazy kind of thing. SO, after our big meeting at 2p (all the medical teams are meeting with us to have round table discussion about our options and his "long term options and prognosis") they would like to try to pull the tube out. Another big factor in this decision is how incredibly unhappy he his. His is depressed. We have been playing worship music in the background, I've been looking at him non-stop so he knows he's not alone, Phineas and Ferb, talking about spending rediculous amount of money on Legos. Anything to get him to think about the great future God has for him, and that this is temporary and that we are going home soon, w/o a vent (saying all this in FAITH). I have never lied to my son and have taken some heat for this, you know little white lies you tell kids, etc. God shoots straight with us, we should do the same to our kids. My theory on this is that, if they learn they can't trust us, they grow up feeling like they can't trust what God said. Anyway, my point, when I tell him something, he knows I mean it. I keep looking him in the eye, telling him those things. We both believe it. All three of us, believe it.


So, we need TEAM JOEY to pray like never before. This is the biggest test of his life. He is so unhappy with tubes coming out of everywhere and for his own safety, when we're not around, they literally tie his hands down. He's so compliant. All last night he'd try to reach for something around his head, I'd freak out and grab his hand, and he'd ever so carefully try to not touch what I said, and gently itch his ear or cheek or whatever. He started to itch his port and I wigged, and he immediately stopped. He has always been so compliant and wanting to please us. He is such a good boy. So good.


Results of MRI probably before or at 2p meeting. This is a big day. BIG. We have so many people to thank. People that are working overtime so I can be here, the meals that have been coming in. Mitzi and Cari, that was amazing. We will formally thank all of them after today. Today has to go well. I believe he'll perk up, w/o the tubes in, the coughing and sneezing will stop. And this will really start a cascade of good things to come for him.


Pray like your life depended on it. His does. Believe. See him breathing. See him sitting up in his bed talking and putting Legos together. Have confidence it will happen (Heb.11) If all we ever do is walk around accepting whatever comes our way and believing what our eyes see, and not what COULD be, well, that doesn't take any faith at all. And there's no way that can be God's plan for us. Just exist in the world. Accept it as it. Bad stuff happens, just the way it is. Another statistic. Another victim, fallen to cancer. Not this time. Please help me. I can see a day where we have a huge reception or open house or whatever, and he is healthy and thanking all of you. Hugs and conversations, maybe when he's older, thanking every one of you who took an hour to pray, sent a note, brought a meal, or told someone that you know is a "prayer warrior" that could make a difference. Who believed we don't just have to take life as it hits us, get kicked around, or accept evil in the world. But he knows how many people are praying. And after all of this, I know he'll want to thank anyone that had a hand in his recovery. I hope this doesn't sound preachy or like I got it all figured out and am trying to convince you of something. Exactly the opposite actually. I am trying to "encourage myself in the Lord" and get psyched up for a big day. He's counting on me. Thanks for helping us. We sure need it. :) Also, hope this was somewhat coherent and clear (mud?). So tired.


**********************************************************************


Success!
Written 5 hours ago

He did it. Was so brave. Our RT said shes been intubated 4 or 5 times and being extubated is horrible. So proud of him and thankful to God and TEAM JOEY! More info coming. We're a mess. So happy. So many ppl to thank for getting us through. He has a lot of healing to do, don't stop praying. A lot of things they are concerned about as far as seizures, brain function, and as always, fighting this cancer. Milestone. He is so relieved to get that tube and harness off. There is some concern about brain damage after seizure. And he has to sustain respiration. So far so good. :)


**********************************************************************

Care group team meetings
Written 3 hours ago

Just talked to the attending regarding care group teams meeting. They seemed really surprised. He said well, the meeting was to discuss all other outcomes except this. "This is a best case scenario." They (head attending) called off the meeting provided we understood Joey's long term prognosis. I smiled and said Dr. Shih has been very forthcoming and direct about his opinion of Joey's long term odds. We got it. Dr. Shih has actually been our biggest advocate through all this explaining to PICU team that he evaluate him in hem/onc (after seizure) that it was unlikely the cancer was causing this, and that being closest to Joey and dealing kids w/medullo that have seizures, everybody needed to calm down; my words and impression. We really appreciate Dr. Shih's professionalism and tact and willingness to speak up to the other specialist teams. Neurology was terrific as well. Dr. Harris had the thought too, outside the box, that maybe Joey's specific breathing physiology and habits fall outside of the programmed parameters of the ventilator. Amazing piece if technology (vent) but it was saying Joey flat out can't breath on his own. An analysis of Joey right now, relaxed in his bed, rolling at a 20-30 breaths per minute, O2 at 100%, normal heart rate, would certainly seem to contradict that. We understand their perspective. We do. They have to speak to what they observe and what history and statistics suggest are predictors of outcomes. I'm just really glad God gets the final say. 

Again thank you all for your prayers. We are so grateful we will be taking Joey home soon. Maybe Sat. Depends on how he does tonight breathing as far as getting his feeding tube going again. In the event they would need to intubate him again, he can't have anything in his system. So maybe tonight or morning start feeding then maybe take home sat or Sunday.


We'll let you know if there are any developments.




Sunday, October 21, 2012

Prayer Request For Joey Keller, UPDATED

After ten days of no news, there is this from Joey's Dad Nick, as recorded in his CaringBridge journal, published about about two hours ago:


Hey guys. Hope everybody's having a good weekend. We've been watching some things closely over last few days, concerned but not jumping to any conclusions. Last night and this morning we noticed some things and have been trying to figure out if its from the anti-seizure meds, low sodium, too much Taurine (I know, same stuff in Monster drink is in his Peptamen!!!) or what. Early this morning he was hiccuping and doing this thing with his mouth that he also did before seizure on the hem/onc floor before we ended up in PICU. We were this close to running him to ER. He thought he was in KY (grandpa and grandma's house) and was jumbling his words horribly. We were pretty freaked out. Yesterday, the meds zonked him out so bad, Eliz and I were discussing what we could do different to help him. Being too tired to talk is not an acceptable QOL (IE, change meds). When my son is too tired to even talk about Legos there is a problem. He just woke up and is acting fine. Although we haven't given him the VimPat or Keppra yet. Last night he got way worse AFTER giving his meds. Going to give them now. If we give them he could start seizing. If we don't (we always have per doctors orders) he could start seizing. Heck, the PI says these anti-seizure meds can cause seizures and seizure like s/e's. we just want him well. Like he was several days ago. There has been a slow decline over last few days. Somnolence and cognitive deficits. Please pray. Thank you. 

Joey



Though it makes me nervous to do so, and is clearly beyond the scope of what I can actually know, I want to reiterate my comprehension of Nick and Elizabeth's understanding of their son's situation.  I don't know them.  All I know is what I read,

They know, the three of them, that he won't survive this recurrence of an aggressive brain and spine cancer.
They are fervent Christians, but normal people, parents to a dying, precocious child.  There is dissonance.
They all want more time, but are aware of Quality of Life (QOL) issues, though there is a natural shifting of   sand meeting water, there is a tide at work.

They are not being cruel by trying every thing they can think of, and all of it has the Joey Seal of Approval. I've no doubt, not one bit, that were Joey to say "stop," they will stop.  The saddest, and probable, scenario is that he slips into some form of comatose state, as in this last crisis.  Then, I hope, the doctors they have come to trust will guide them to letting him go.

I've no right to write these things... but I am, I have, and if it offends you, well... move along.

UPDATE 10/21/2012, 8 PM:

Saw some new symptoms. 3 hrs ago we made it up to I70 (headed to Riley) and talked ourselves out of it. Saw some new symptoms w/in last hour that really concerned us, we're at ER now. Promised I'd keep praying folks up to date. We sure appreciate it. Waiting to see ER doc. 

Sunday, November 18, 2012

joey ran his race:::joey flew away!

from joey keller's dad, news that i find relieving, news that is bitter to no end for dad nick and mom elizabeth:

Joey finally met in person (face to face) the person he's loved, trusted, admired, talked to, talked about, and worshiped for years, Jesus, tonight, at 9:35p. Buddy, you loved that song, I'll fly away....you beat me there. Which is not the way it's supposed to be. I will be there soon. I never knew I could love someone like I loved you, son. My heart will be broken until I see you again. You are awesome. I told you often how much I loved you and thought of you. I can only hope to run a race as strong, and focused, and effective as you. In spiritual terms, I look up to you. I love you and am a fractured, torn up person without you. I'll never be right. But I will see you soon. One more time, "Dad thinks you are awesome! You make me happy! I am so proud of you." I'm coming buddy. Pray for me.




Some glad morning when this life is o'er, 
I'll fly away; 
To a home on God's celestial shore, 
I'll fly away (I'll fly away). 


I'll fly away, fly away, Oh Glory 
I'll fly away; (in the morning) 
When I die, Hallelujah, by and by, 
I'll fly away (I'll fly away). 

When the shadows of this life have gone, 
I'll fly away; 
Like a bird from prison bars has flown, 
I'll fly away (I'll fly away) 


I'll fly away, Oh Glory 
I'll fly away; (in the morning) 
When I die, Hallelujah, by and by, 
I'll fly away (I'll fly away). 


Oh. How glad and happy when we meet 
I'll fly away 
No more cold iron shackles on my feet 
I'll fly away 


I'll fly away, fly away Oh Glory 
I'll fly away; (in the morning) 
When I die Hallelujah, by and by 
I'll fly away. 

Just a few more weary days and then, 
I'll fly away; 
To a land where joy shall never end, 
I'll fly away (I'll fly away) 


I'll fly away, fly away Oh Glory 
I'll fly away; (in the morning) 
When I die, Hallelujah, by and by, 
I'll fly away (I'll fly away).



Thursday, November 8, 2012

Getting it all out, at once...

If you don't hate cancer, you ought to.  I take that back... maybe you are different from me -- it happens -- and you come at cancer with your love of life and a refusal of hate, a refusal to hate anything or anyone.

I'm resigned to not being that great of a person.  I've almost come to accept Nate Silver's probabilities that I'll go to Hell.

There is, right now, too much cancer in my life... and it's not even in my life, properly speaking.

It's in my friend Joyce's life, as she watches her husband Billy struggle to breathe and lose, perhaps thankfully, his grasp on reality.  She's amazing. Trust me on that...

Joyce and Billy on September 15, 2012

Joyce wrote on her Facebook page, this past Monday:
Billy's nurse just left, he has gone downhill very fast. She said there were NO lung sounds at all on the right and very little on the left. He has been out of it, talking to himself and people thats not there. He is sooooo worried about leaving Brian, when we ask him what he said he will say he was talking to Brian, and Brian isn't here. 
Brian is Billy's oldest grandson, who knows him more as a father...

Cancer is still in Kate McRae's life every day, too -- but she's been doing wonderfully, and hopefully will continue to be cancer free.  She and her mom Holly, and her dad Aaron, sister Olivia, brother Will are in the midst of that unimaginable angst of it being "MRI" time.  Oh, and she has pneumonia.  Holly wrote, a few days ago:

This will be 6 months out of treatment, and my heart continually reminds me that she relapsed at 9 months out of treatment last time. We pray for CLEAN scans. Not just to the Dr's eye, but that there would be distinctly no cancer cells left in her body. None. And no confusion upon reading the scan.
Kate McRae, courtesy of her CaringBridge site


HAPPY UPDATE for Ms. Kate:   "No Evidence of Disease!!!!!! Some of my favorite words!" Yayyyy!  That was Holly's tweet after Kate managed a 3-hour MRI without anesthesia, because of her pneumonia. The funniest tweet came next:

Kate: "Mom, I love you, by please don't shout it out about my MRI. They are strangers. You are embarrassing yourself. "
Not even close, Ms. Thang!

Moving on... of the other children I follow (I try to keep it at four... no idea why, but four it is) -- my personal hero, another Ms. Thang (check out her bangled-braceleted arm!), Hannah, has finished her chemo and despite a struggle with its side effects, is home.  Her nonchalance in the face of rotationplasty made me feel quite ashamed at my regret at losing a shoulder, and her courage before all that followed made me a teeny bit less self-absorbed, hard as that may be for my Dear Readers to believe.

Hannah's photo courtesy of her CaringBridge site
My third kid is also hanging in there, though his path is rough:  Sweet Braden and his super-courageous mom Maranda.  His most recent MRI?  Maranda wrote:

Brayden's MRI is completely stable. The Dr is very pleased. We are so relieved. Happy tears all around. Thank you is not enough, but it is all I have at the moment, plus lots of love from us.

Brayden's cancer, though, is not that simple.  But "stable"?  Hell, we'll take "stable."  Here's Handsome Boy:

Handsome Braden, courtesy of his CaringBridge site
 But... as reader TAM and I have commented, back and forth, both of us with the profound luxury of watching only selective truths, and from the comfort of our computers... it is grim with young Joey Keller.
I simply cannot bring myself to bring you up-to-date, if you have chosen to get news of Joey here.  I encourage you to go to his CaringBridge site as the situation is as complex spiritually as it is medically. Bless his parents and their faithful entourage, they cannot let him go... when perhaps, he needs to.  My worst fear is that he may want to, but is so tender-hearted, loves them so much, that he cannot say so, cannot give himself permission, lacking theirs.  This feels cruel to write, and a cold chill of guilt envelops me.  I cannot know or come close to imagining Nick and Elizabeth's tortured pain... but I *do* have a vague idea of Joey's, and that drives my cruel words.

Nick last updated the CaringBridge journal in the very early morning of November 7:


We saw the MRI. Major growth on lumbar spine, brainstem, and in temple regions sort of growing towards the center of his brain. It WAS in CSF kind of "on" his brain, now it seems its growing into and through his actual brain cells and tissue. Wicked, evil disease. We discussed hospice and the reports from all relevant medical teams was, "anything else we could do will cause more harm and damage than any potential for help or therapeutic upside." They do believe his unusually high heart is do to the cancer spot/tumor/lesion on or in his brain stem. We flat out need a miracle. Otherwise, what he will have to endure, systematic loss of brain and organ function, system failure, ventilator again, it's unthinkable. They were especially concerned looking at this MRI vs. the one just a month ago (brain) bc Its really moving quickly. We have got to pray. All those scriptures I looked up and listed in previous CB postings on faith and healing, haven't changed. The promises regarding healing...haven't changed. We've exhausted every medical option that exists (due diligence.) Now, We look to God to do what only He can. All day long I kept thinking about the Israelites looking at the Red Sea, the Egyptians racing to basically cut their throats or put them back into slavery. They thought they were dead. Or at best, had no idea how God would get them out this, this time. Slaves for 400 years, finally free, and now this??? To die here, like this? All day long I've been getting texts from buddies and pastors from those very chapters. Don't believe it's a coincidence. The thought keeps going through my head, if its not impossible, it's not a miracle. Thx for praying for our Joey.
PS- I have been inundated with emails and texts and VM's. thank you all so much for your kind words and for reaching out. I just can't get to them all. In time, I will read and hopefully respond to every one. There are some aspects of my job I must do everyday and outside of that, my time/energy is focused on Joey. I hope you understand. Please, pray. Just pray. Thank you.

Father and Son

Tuesday, October 2, 2012

elizabeth, nick, and joey

Elizabeth, Joey, Nick
from Joey's CaringBridge page


There have been no updates to the journal that Nick usually maintains with great vigor -- not since September 30.  But this picture was added, and this picture says it all.

Do whatever it is you do, Dear Reader.

Wednesday, May 5, 2010

Core 'ngrato meets Joey Skee

This is a slightly spat-upon-then-polished repost, brought to the forefront from its début in January 2009 due to a surge in searches for Core 'ngrato, originating, of course, from the Great Lakes region of the United States. And from some nostalgic soul in Phoenix.

Any excuse will do to listen to the old music.

Part of the refurbishment was to be a short history of the song. In the course of doing that pleasant research, I hit upon the answer to the mystery behind the search statistics:

AN EDUCATIONAL EVENT! An-n-n edu-edu-edu-cay-cay-cay-shun-ul-ul eve-vent-t-t-t-uh.
[Oh. You were supposed to imagine strobbing colors and echo.]

Joseph Sciorra, of the John D. Calandra Italian American Institute of Queens College, CUNY, will be presenting a Research in Progress Talk:

Mediated Renderings and Diasporic Musings: "Core 'ngrato," a WOP Song

A transnational stream of music in the Neapolitan tradition flowed from the United States to Italy, with "Core 'ngrato" acknowledged as the first song in the Neapolitan tradition composed or recorded in the United States that traveled to Italy. Historian Sciorra documents the role of lyricist Alessando Sisco's role in this international musical exchange that stretches from performances by Enrico Caruso to the television series "The Sopranos."

Let's meet up, shall we, cari amici, buoni amici? What? Oh. May 13, 2010. 3:30 to 4:30, 3rd floor, Elmer L. Anderson Library. Hmmmm?

Oh. Well, the University of Minnesota.
More precisely:
222 21st Avenue South
Minneapolis, MN 55455



View Larger Map

This Joseph Sciorra fellow? Check out his website dedicated to Italian Rap! And thrill to this effort:

Towards a New Italian American Identity

This site is part of an ongoing effort to develop a sense of Italianità informed by history and vernacular culture that stands in opposition to ethnic chauvinism, racism, sexism, or homophobia.

This site is dedicated to all you historians and writers, you painters, you healers, ecstatic dancers of la pizzica tarantata, sons and daughters of Artemesia Gentileschi and Louis Prima, you women warriors and Neapolitan Rastas, you piece workers and day laborers of poetry and prose, devotees of La Madonna Nera, you po-mo neo-streghe, you nuovi briganti leading the cultural insurrection for fresh ideas, a reinvented community, and a new vision of who we are and what we can become.


Also, maybe better, known as Joey Skee, Joseph Sciorra is a folklorist, the associate director of Academic and Cultural Programs at the John D. Calandra Italian American Institute, Queens College, City University of New York.
*****************************************************************************************************

La Bonne et Belle Bianca Castafiore is an avid Sopranos fan.

Having sold her Pioneer Elite Kuro PRO-111FD as part of the scheme to defraud local tourists fool enough to think that Francois Ier's bedroom might be found at the end of a three foot tunnel into the northern stone wall of Marlinspike Hall's Murky Moat, she now has to plop her considerable self down on our bed to have access to telly-vision.

Fred, long up and about, sat perched in the monk's choir section we scavenged last summer from one of the many 12th century Tête de Hergé Trappist monasteries -- he managed to seamlessly convert the careful carving and intricate iconography of the cabinetry into a computer work station that might be confounded with one of those numerous light, functional and terribly blonde Scandinavian excuses for furniture.

Obviously not having much foresight, he tittered in my general direction as I groaned, seasick from the white-tipped waves in the waterbed -- the ocean twisting and frothing under the Castafiore's plopped girth. (Any physicist can tell you that *plopped* girth is a totally different animal from yer everyday plain girth.)

Fred will get his, fret not. I am thinking flying buttress...

"Chut!" Bianca hissed, as apparently I was thinking too loud. "C'est l'heure! Taisez-vous! On n'entend rien!"

I'm not sure, but I think I heard "connards," followed by "salopes." La Bianca is about to become less belle the more she leaves traces of her fading... bonté -- ifyouknowwhatimean and I think you do.

Lucky for her, my bad humor fades away as we semi-snuggle, in typical European cooptation of girlish erotica, and watch the final episode to Season 3, both sniffing and sneezing as Dominic Chianese -- with a loving vibrato and far away eye -- sings Core 'ngrato.

Here are three versions of this lovely Neapolitan song -- leaving out Caruso and Corelli only because of the poor quality of their recordings.

Dominic Chianese




Andrea Bocelli




Placido Domingo





CORE 'N GRATO
(Cardillo e Cordiferro)
Beniamino Gigli (Italy)

Catarì, Catarì...
pecchè mm''e ddice sti pparole amare?!
Pecchè mme parle e 'o core mme turmiente Catarì'?!
Nun te scurdà ca t'aggio dato 'o core, Catarì...
Nun te scurdà...
Catarì...
Catarì, che vène a dicere
stu pparlà ca mme dà spàseme?
Tu nun ce pienze a stu dulore mio?!
Tu nun ce pienze, tu nun te ne cure...

Core, core 'ngrato...
T'hê pigliato 'a vita mia!
Tutto è passato...
e nun ce pienze cchiù

Catarì, Catarì...
tu nun 'o ssaje ca fino e 'int'a na chiesa
io sò' trasuto e aggiu pregato a Dio, Catarì...
E ll'aggio ditto pure a 'o cunfessore: "Io stò' a murì
pè chella llà...
Stò a suffrì
stò a suffrì nun se pò credere...
stò a suffrì tutte li strazie..."
E 'o cunfessore, ch'è perzona santa
mm'ha ditto: "Figliu mio làssala stà, làssala stà!..."

Core, core 'ngrato...
T'hê pigliato 'a vita mia!
Tutto è passato...
e nun ce pienze cchiù

Friday, May 2, 2014

The Genius Behind CALMARE and CTTC: Meet Giuseppe "The Vulture" Marineo

I've not mentioned CALMARE in quite some time.  First, I had one of its ardent supporters ask me to please "leave me alone," and the whine rang through the writing such that I felt guilty for the poor man. Then, my disgust having reached such an acidic state, it was either fork over another $100 for stomach medication or ignore the scam, ignore the scammers, including poor Joey and his "leave me alone" [sniff, sniff].

Actually, what came first was an extraordinarily prayerful woman badgering me on YouTube -- so well known for the quality of its commentary -- when I did not praise her Lord and sign up for Calmare treatments immediately.  They cured one of her offspring, you see.  She repeated a bunch of FDA rubbish, then some VA rubbish, then plain rubbish.  Then she got personal.  Anyway.

I conducted myself with my usual bendy, bendy politeness, and watched as she moved on to praise her Lord in the comment section of other people suffering with CRPS.  It was almost as if she were paid to do it, or something.  Anyway.

CTTC is the corporate entity that markets CALMARE / Scrambler Therapy as a cure for various neuropathies, including CRPS, post-herpetic neuralgias, and the nerve pain that can be engendered by chemotherapies.  It's crucial that the public understand that CTTC does nothing but coopt the patents for various products.  CTTC sells its soul to sell, it does not have any real investment in the product, and in this case, the patients -- just in the public perception of the product, and how cheaply they can buy up patents.

In their fertilization of the advertising world with CALMARE and CALMARE-related pellets of untruth, CTTC peppers social media, patient support groups, and advertisements dressed up as pain management newsletters or health-related articles decorated as actual research.  Videos have been widely distributed, starring cured patients who tearfully recall their prior suffering state, while never documenting that state in the recordings.  The Testimonial approach to CALMARE / Scrambler Therapy duplicates the get-rich-quick late night infomercial -- in methodology as in message (tremendous, too good to believe results with no effort beyond prying loose a credit card from a tight wallet).

I have many favorite lines among the testimonialists.  Right now it's I-am-so-thankful-for-Calmare because (prepare to weep):

"I have an allergic reaction to all medications. I cannot even have chemotherapy with stage 4 cancer."

I am not without a tender heart, as I ponder all the people I have known whose bodies relished the poisons of their chemotherapies and who never had any distressing reaction to the harsh chemicals coursing through their systems, at all.

The Straight Dope message board, my source for straight dope messages, once briefly contemplated how these remarkable testimonials come to life:

User ARCHETYPE, a naive sort, starts the conversation:
Infomercial testimonials
How do they get people to so convincingly testify in those infomercials?
Some (especially the latest ab gadget or those get-rich-quick products) are scams and the thing that gets me most is how they get these people to so convincingly testify. Some infomercials even state that their testifiers are not compensated.
It boggles me in three levels:
1) You KNOW the product can never work as advertised.
Home-based businesses. After researching some of the home-based business on the net and discovering how their scams actually work and reading unfortunate purchasers' stories you know it is not as simple as "making $12,000 for a few hours of work in my spare time in my underwear."
The latest ab gadget. Losing weight involves diet and much more significant exercise, cardio, etc. than just crunching the damn machine 5 minutes a day.
2) This applies more to products that are brand new in the market (I can't think of any specific ones at this moment!). But how do they find the people who have used a certain product it for X amount of months or years when you know that this is the first time it is being advertised?
Now, I'm aware of such things as test markets but how do they market to those test markets? And how do they find people who had success with their products when it clearly cannot work and convince these people to testify for their product?
3) What's in it for these testifiers? Is it a lot of money? Aren't they afraid their friends and family might see their testimony?

So how do they get these testimonies? Are they all lying and/or are paid actors despite the disclaimers that they are not?

ARCHTYPE receives many thoughtful responses, but I think the essence of them all is best encapsulated by user T-BONHAM:


They lie. LIE.
After all, if you are ripping people off by selling them a product that does not work, why would you hesitate to lie about testimonials?
Think of the marketing of CALMARE / Scrambler Therapy as some sort of magic act.  Most such performances rely on distraction, sleight of hand, a spot light drawing the eye from the unlit area of ruse.

Most recently, I came upon a much-marketed CTTC/CALMARE/Scrambler Therapy saleswoman who has done her bit with a series of videos, and for the cream and cherry on top, she has a blog.  What's fascinating is that her blog, with scant entries over the years, never mentions her intense suffering from a "pain condition," until CALMARE enters the textual scene.  And, then, she does not mention CRPS! It's as if she and her corporate backers are afraid of being too specific.  She gives a semi-accurate description of CRPS but doesn't want to worry her readers or cause friends and family to fret by saying exactly what horrid "pain condition" is beleaguering those poor legs of hers... Good thing that her bogus treatments worked wonders, though she adds that indelible soupçon of believability by mentioning that she may have to have "booster" treatments.

Her name was Amanda, Amanda Something.  For some sick reason, whenever I look up her name, Phil Ochs' song "Miranda" * jumps my brain, and I find myself humming along with my sober researching. 

In the beginning, much was made of the inventor and original patent holder, Giuseppe Marineo.  He was called, falsely, "doctor" and "professor."  As he became more of an embarrassment, he received more in the way of money and CTTC got more in the way of "ownership" of the miracle device, so the marketing geniuses could begin to fashion the background into which he might fade.

As various gynecologists and chiropractors, stethoscopes slung rakishly about their necks, receptionists shadowing them in short white coats, took over the public face of CALMARE / Scrambler Therapy -- along with some of the strangest testimonial-givers on the planet -- the "scientist" behind the earth-shattering souped-up TENS unit was cast into oblivion.

No one bothered to answer questions relating to his claims and intentions.  

How did this machine come to be a treatment specific for intractable neuropathic pain when it began as Giuseppe Marineo's personal brand of woo, wrapped in a fake curriculum vitae, protected and obscured by Delta R&D, his "bioengineering research centre with a unique history."  Marineo's goal was apparently the creation of a device in the tradition of the Fountain of Youth, a modulated electric buzz that would retard aging at the cellular level.

Woo, woo. A quick woo primer:

Woo generally contains most of the following characteristics:

  • A simple idea that purports to be the one answer to many problems (often including diseases)
  • A "scientific-sounding" reason for how it works, but little to no actual science behind it; for example, quote mines of studies that if bent enough could be described in such a way to support it, outright misapplication of studies, or words that sound scientific but make no sense in the context they are used in
  • It involves the supernatural and paranormal (not necessarily)
  • A claim of persecution, usually perpetrated by the government or the pharmaceutical, medical, or scientific community
  • An invocation of a scientific authority
  • Prefers to use abundant testimonials over actual scientific research
  • A claim that scientists are blind to the discovery, despite attempts to alert them
  • A disdain for objective, randomized experimental controls, especially double-blind testing (which are kind of what makes epidemiology actually, y'know, work)
  • And, usually, an offer to share the knowledge for a price.
Oh, the woo you are about to muddle through!

Put on your waders, and unpack this introduction to how Marineo went from a one-man show to an incorporated one-man show with a tenuous connection to a research university.
[Delta R & D] was born out of individual research work begun in 1983 by Giuseppe Marineo, a researcher and bioengineer, who advanced theories to reformulate the concept of disease (and the corresponding treatment) from a biophysical rather than biochemical point of view. The idea was to restructure the known features of both according to the principles of thermodynamics by means of an analysis and the detailed specification of the relations between entropy, disease, repair processes and ageing.

This new approach to the interpretation of the traditional aspects of medical science makes it possible to go from a highly heuristic system to an extremely conceptual and rationalized system, which can create models of disease and treatment so sophisticated as to render the experimental results highly predictable. If the latter are in line with the predictions they automatically validate the development model.  
Furthermore, the very name of the theoretical system developed entails a natural transition from reductionist methods to systems theory which, in the present research, takes the form of a powerful working tool capable of providing adequate support for the development of therapies of practical utility.

In practice Marineo introduced into medical science the research and development criteria typical of engineering, in which the thoroughness of the preliminary theoretical work fully determines the expectations of the experimental verification of the method used. In 1987 the basic research was already sufficiently well structured to be supported by a technology capable of translating the theoretical system into a truly useful therapy.

The first experimental verifications fully confirmed the validity of the theoretical models developed and opened up concrete future prospects for the safe and non-invasive treatment of pathologies for which conventional methods had proved ineffective.
In 1998 the Italian scientific community, which had been constantly informed of all research developments, deemed the product of 15 years research to be scientifically valid, the theoretical principles and experimental data to have been clearly demonstrated and the bioethical principles regarding the respect and protection of the patient to have been respected.

In other words, the research carried out by a private individual was accepted and supported by the public authorities. It was consequently possible to begin official university and hospital studies, at the conclusion of which the first international publications were produced.

In order to support these changes, in May 1998 Delta R&D was set up, thus marking the beginning of the mature stage of this individual research endeavour. Although the original philosophy was retained, a logistical structure was now available to satisfy the new phases of development and to maintain and expand relations with the international scientific community. 

I dare you to unpack this into meaningful language reflective of actual science, or even good business.
Or this, from a website now removed, written by the great Marineo, himself:

The assumed pre-coding capacity is a more logical explanation than stochastic fluctuation (which in this case must be re-interpreted as a consistent modification of the information content per stimulus/time) the different discharge time characteristic used by the receptor for the same stimulus if this occurs in sufficiently short time intervals. In this perspective, to return to our model, the comparator?? Is the arbitrary module that sorts the information, compares it with a short-term memory and if it recognizes a stimulus similar to the preceding one, modifies the gain data and the information property which it passes on to the amplifier/attenuator (synapsis), a vital element that controls the passage/non passage of the “decoded” information stripped of spurious signals, associating it with the correct degree of intensity. Again with reference to the model, the noise and stochastic variations are separated since, in my analysis, at least some of these fluctuations actually consist of sub-information capable of modifying the learning capacity and sensitivity to the stimulus if repeated over short time intervals. If the data are reinterpreted in this sense, frequency modulated discharge sequences immediately took on a different significance when combined with the “pseudo-noise” modulation accompanying them and which became an essential element of the “primary” information. At this stage I considered that I had all the elements required to materially construct a pain scrambler (technically an information mixer), that is, a system capable of “masking” the pain signal.

Here's another, still extant (if badly translated by Google -- I apologize for my lack of skill in Italian) version of the the birth of the great regenerative process, the Scrambler Therapy.  Marineo simply MUST have a genetic link with the superb Ponce de Leon.  This comes in an English version... already cited.  It was fascinating to pick my way through the Italian, which bears little to no relation to its bastard English cousin.

In the mid 80s I completed the development of a theoretical model that interpreted on the basis of biophysical dynamics of chronic-degenerative disease processes, and more generally of an aging workforce. On the basis of this theoretical model I have subsequently developed a technology (Systems Entropy Variation Delta-S) in accordance with these principles that was potentially able to reactivate regenerative processes of tissues and organs without the use of stem cells.
In 2003, this research has received European approval for use in ambulatory and hospital liver cirrhosis. The results of phase II studies have been published in the Annals of the Academy of Sciences in New York and in other publications indexed. Despite this initial success, for reasons related to the lack of industrial sponsors, I found myself in substantial economic impossibility of progression in phase III clinical trials.
This research dissemination in the scientific community was so overcome by what I later developed the chronic pain, now known as the Scrambler Therapy ®. Contrary to what many believe, the "Scrambler Therapy ®" was born almost accidentally and indirectly from my studies on regeneration, although initially considered (sbagliandomi) only support the latter.
In particular in the field of regeneration in the late 80s I developed two lines of experimentation leading to verify if the theoretical assumptions that I had assumed were actually used in the clinic even humans. The first line of research related to cirrhosis of the liver, where the chances of success were predictably higher for most hepatic regenerative capacity of the organ.
The second line of research instead on the regeneration of nerve fibers, almost a complete utopia in those days, even if Rita Levi Montalcini had just got the Nobel (December 1986) for the discovery of 'NGF, the growth factor of nerve fibers . Inevitably occupandomi nerve injury I got in touch with what is, by definition, considered the worst form of chronic pain that is known in medicine, neuropathic, which essentially prevented the possibility to study the possibilities of regenerative nerve damage. Initially I sought the help of specialists in pain, but when I spoke of neuropathic pain were more discouraged me.
For a long time I turned to all sorts of pain specialist, seeking solutions also in acupuncture and hypnosis clinic, but the pain seemed to resist any attempt at treatment. I was about to resign myself to this situation by deciding to continue my research only on cirrhosis of the liver, where although always of limited series, I had already obtained preliminary results very encouraging, and free of the problems related to chronic pain that I met in nerve damage.
Just a few days as I was maturing this decision, an 'association of ill asked me to attend one of their meetings. I accepted, and put it back in the face of so much suffering and hopes of these people, I decided that if there was still no effective treatment for these types of pain, this does not necessarily meant that it was impossible to do so.
My knowledge of neurophysiology were already quite wide and deep, I was not so difficult to integrate with the specialized knowledge of the pathophysiology of chronic pain. Just as approfondivo this knowledge met the Gate Control theory, that is the dominant model and commonly accepted understanding of the mechanisms of pain perception. With some surprise I immediately realized that this theory was applicable only in acute pain. Conversely, I could not find at all its logical application in chronic pain, although conventionally accepted in the scientific community.
I understood that my assessment was practically heresy given the importance of this theory, the weight of scientific authors, endorsements obtained from its inception, and subsequent to the full consecration obtained after the seminal article published in Science in 1965. Then Thinking that he had missed something, I continued to deepen my studies, but most did this, the more my belief dell'inapplicabilità of this theory to chronic pain (especially neuropathic) prevailed.
I can say that it is exactly at this moment that comes Scrambler Therapy ®, because by identifying what I thought an error, I also found the way to a possible solution, which is now a clinical reality no longer experimental
About had enough?  Take a break from this thick, smarmy scientific writing and read something uplifting.


Calmare for Nobel Prize: Calmare Inventor Giuseppe Marineo is recieving some groundswell of support for a Nobel Prize this year, in the Physics, Chemistry, and Medical categories (he can only win one category) due to his invention of the Calmare medical device which cures pain without the side effects of narcotics.

Damn the limitation that keeps Giuseppe from winning in every category.  It makes a mockery of the man's work.

Or you can slog on, maybe picking up a copy of the story of his AIDS cure, available on eBay at the moment:  Dall' Altra Parte (The Other Side) for a mere 9 Euros.  There are other stories, besides his own tale, of his electromagnetic cure, notable at the time as it was being "tested" on poet Dario Belleza, and resulted in a charge of practicing medicine without a license and vaguely familiar charges of "totally inconclusive data."

Denying he had AIDS, commonplace enough for the times, Belleza told interviewers:

"The treatment was reserved for a group of five people," concludes Dario Bellezza "because the machine was not powerful enough. No one was tied to the bed, as it was written, it only used electrodes and patches to apply them."  

The electromagnetic machine, which worked through patched electrodes... WAIT!  That sounds VAGUELY familiar!  Could it have been, GASP, just an earlier version of the scrambling pain-hexer, the miraculous Calmare, now being snake-oil-marketed by Calmare?

It was further described in the press as witchcraft and charlatanism

Granted, what Marineo and the dead poet brought up in a war fought in the courts as well as the press, that people have the right to "diversity" of treatment, and to treatment considered "alternative," is a valid argument.

It's just painful to watch a vulture move from one corpse to the next, one hopeless illness to another, reaping, reaping, hopping away, with strips of flailed skin flapping from its beak, feeding itself... and divesting its prey of all humanity.

Is that over the top?  
Is it, really?
















* Miranda lyrics, so that you, too, may hum along:


Do you have a problem,
Would you like someone to solve them,
Would you like someone to share in your misery?
Now, I don't know the answer, but I know a flamenco dancer
Who will dance for you if you will dance for me

[Chorus:]
Her name's Miranda
She's a Rudolph Valentino fan
And she doesn't claim to understand
She bakes brownies for the boys in the band.

Early Sunday morning
When the sermon lines are forming
And Saturday night is the memories that it gave.
She's busy in the pantry, far away from Elmer Gantry
Who is busy baking souls that he may save.
Everybody's soul but Miranda (Chorus)
The dice of death are calling
While the truck of time is falling
By the thumb stuck out on the highway of the years.
The tollgate at the turnpike is ignored by those who hitch-hike
And the Howard Johnson food is made of fear
But not Miranda 

(Chorus)

The sun burnt skin is peeling
On the doctors who are healing
And the license plates are laughing on the car.
The pain is so exciting
And everyone's inviting
You to look upon their operation scars.
But not Miranda 

(Chorus)

The condiments are clashing
While commercial planes are crashing
And the music of the evening is so sweet
Now fully in agreement
Oh, their feet have found the cement
And they all believe the signs are on the street
Her name's Miranda 

(Chorus)

In the bar we're gin and scotching
While the FBI is watching
They are tape recording every other word
The bartender is bleeding
Pardon me, I just was leaving
as another clever voice repeats absurd
But not Miranda 

(Chorus)
(repeat first verse)





© 2013 L. Ryan