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!

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:

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."

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.

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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. :)


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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.

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. 

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).

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

Now that's whatcha call a STUD MUFFIN!

Joey Keller and his PT Babe