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."
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."
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