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:
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:
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.
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| 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.
Ohhhh... there are apparently no medical options, and the hospital is talking hospice. But they seem to be saying they'll put him on a vent again "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" Poor little boy, so sad that now he's been suffering. Such an awful disease.
ReplyDeleteTAM
i know, i know. in fact, believe it or not, the hand of god came down and made my computer malfunction last night as i was writing a response in the "guestbook." i had reached the point where i wanted to beg joey's dear dad to believe that god's miracle had come, that "healing" had come, and that just because it all came differently from what he expected it to look like or be -- it was nonetheless god's answer. thank goodness my computer died, because i don't do "god-talk" well at all. to put him on a vent, to continue to force him to try and please them when his brain, even, is no longer really his own... it's blind, it's selfish. i was hoping that the doctors, especially some of the doctors that these poor parents seem to trust, would just say, outright, "he has fought the good fight..." and now let him go to what can only be considered his reward --
ReplyDeleteyou said it, TAM, "such an awful disease."
My heart breaks for that poor child, and his family.
ReplyDeleteI'm so sorry to say, this is why I didn't think it was a miracle he made it home the last time - I knew something like this was probably to come. I've seen it in person before. Sad to say, I wish he had not been put on the vent that last time - he wasn't in pain. He would have gone more peacefully then. This... a few days of legos, but now he's suffering. That post where he said 'my feelings hurt' ohhhh... and now he's in physical pain as well it seems. Poor baby. I hope he will be free of pain soon, somehow.
TAM
every few hours i check the site for the update i think we are all praying for... the one announcing "peace." i hope that -- based on the latest mri results -- joey becomes unaware, that neurotransmitters do their protective job and give him whatever illusion he needs to escape from the pain of caths and vents and the unrelenting misunderstanding of "cure."
ReplyDelete