Update [2005-4-7 5:38:50 by Jerome a Paris]:
I put this up yesterday evening after coming back from the hospital and a quiet happy dinner with my wife, just to give the info to the regular readers of my diaries that had so kindly requested some updates after the first diary. I did not expect it would make it to the recommended list and have so many comments, and I am sorry that I will not be able to respond to all individually as I usually try to do, so here it is, collectively but addressed to each of you individually: many, many thanks for your kind words. The warmth of the community, as expressed through your words, is incredibly heartening and helpful. I am no longer surprised by this, coming from you guys/kossacks, but I am still amazed by it and its strength.
Just a final word for those of you that commented on this - my son's tumor is located in the channel where all information is transferred from the brian to the rest of the body, so it is a bad place to be damaged as its functions cannot easily be replicated by other brain cells, and we have been warned that full recovery is pretty unlikely. We're still hoping for the best and will do our utmost to get good long-term treatment to improve his motricity as much as possible, but that's the context. Of course, we don't know what science will bring us in the future, and we also count on his own internal strength to get better. He will!
Today, we went to do a new MRI scan of his brain, and I am incredibly happy to report that what was left of the tumor is now no longer visible. It is by no means certain that every single malign cell is gone, but it is certainly going in the right direction. The ongoing treatment (chemiotherapy) will continue as decided earlier, i.e. until the end of this year, but it will certainly be less stressful for us. Tonight, we drank champagne and actually enjoyed it.
He is still partly paralysed on the right side (basically, he has lost the control of his knee, ankle and hand), so it's not like this will ever be totally over as it is highly unlikely that he will recover in full. He goes to physical therapy almost everyday to get back as much as he can of his motricity, and he is now able to walk on his own and hold light objects in his hand. We are hoping for more progress in the coming months, but he cannot get dressed on his own yet, he cannot play with a Gameboy or the like, and he cannot hold a ball (thankfully, he is left-handed).
One of the reasons I am writing here on dKos in general and telling about this in particular is that I am really scared of what would happen if our civilisation failed and we ended up back into survival mode, à la Terminator, where the ability to hold his own would be a vital competence. I have little doubt that he can have a fine life in our current world, but not in any "end of the world" scenario, and I see that the probability of these has increased significantly in recent years (since November 2000, to be precise...), with the energy crisis, economic unbalances and geopolitical challenges that I see ahead of us, not to mention the rise of fundamentalism throughout the world, including the dark "reddening" of part of your country.
I see dKos as one ofthe best places where the good fight is being waged, where smart and fine people meet and discuss and exchange information and prepare action to bring back some sanity to the place where it matters the most today in our world: in Washington, and in each local community. This site now has a amazing (and well deserved) reach, and I want to bring my small contribution to that fight, in the form of information and awareness on the issues which I know about, and which will matter increasingly in coming months and years, in the energy and financial sectors and in developing contacts and sorely needed understanding between America and Europe.
I am very grateful for all the attention which has been given to my diaries, and I will try to continue to deserve this and contribute here, for my son, for my daughters and wife, and for all of us, whether in the US or elsewhere in the world.
Don't hesitate to send me requests for posts or topics, I will try to reply in due time...
And as this is a political blog, just one political "exploitation" of my story. Not only is my son fully covered by our national health care system, but my wife actually gets a decent monthly stipend so that she can stop working to take care of him full time. (and our younger 2-year-old daughter is full time in a government funded kindergarden for which we pay 350 euros per months. The older one is going to pre-school for free). It is totally incomprehensible to all Europeans that such care is not available to everybody in the US, and that the lifes of entire families can be wrecked completely by an accident of fate like ours, in having to pay for it in addition to dealing with the pain of it. How can this not be a massively popular campaign issue??
Anyway, most of you think the same already, and are doing what you can to change that, and I don't want to sound like an arrogant French (I am one of course, but that's another topic ;-) ). So, as a last word, I'd like to add my thanks to the whole kossack community for its support, for all the kind words of encouragement and compassion that have come my way, and again, for showing the better face of America to the world and providing sorely needed hope.
PS - as for the other little girl I mentioned in my previous diary, she is hanging in there. She is about to start a very risky radiotherapy, with unpredictable side effects (because of her age), but the last surgery she went through was successful, so there still is hope for her.
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