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.

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:

1 comment:

  1. You know, I watched a child I loved die from cancer. Not my own child, but I loved her. I think her parents made the right choice about when to bring in hospice.
    There became a point where there was more suffering, and less quality of life, and just trying to prolong her life didn't seem like the right thing to do any more. In the end, despite her suffering, they wanted her conscious though - for them, because they couldn't bear to see her go. I wanted her to go then, because I couldn't bear to see her that way - there was zero quality of life.
    I'm not there, so I don't know with Joey. I'd call him being cured maybe a miracle. Just things being prolonged a bit, I'm not sure that's a miracle for me. I know if it were me that was ill like that, that's not what I would want for myself.
    So miracle or what - I don't know. But does what's happened (which was considered very unlikely) change my thoughts - I'm afraid probably not. Everyone has to make their own choices, of course.


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