Robert Jordan's Blog

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GOOD NEWS

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Guest Wilson

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The good news is that there has been no change since we last communicated guys. Harriet and RJ had to fight like hell to keep it there, but that goes with the territory these days.

 

He told you that he'd be visiting the Mayo on every 90 days and that last month's visit was the first of those. Things don't always go according to plan when you're in a fight, you have to shift and adapt to the situation. Their visit last month lasted longer than expected. The medication regimen had to be changed due to some pretty nasty side affects. Testing required that RJ come off his blood thinner, the steroid and the miracle drug, revlimid. After months on this experimental drug got him into a near "normal" range, he was being pulled off for at least 30 days. We held our breath. The grand news is that the Lambda Light Chain number that was 2.7 a month ago was tested at on 2.74. FREAKING AMAZING! The polyps and the "mass" he described before are also gone. We joked that when they denied him food for over a day in preparation for further testing that his body looked for nourishment and there sat the aforementioned mass looking, well, pretty damned appetizing. Gone. So, back on the Revlimid. Pray that the numbers continue downward, that his body continues the slow march of shedding the beta amyloid deposits and that he regains his strength.

 

RJ had me laughing to the point of pain yesterday. You'll recall his wish list included sky diving and that I promised you I wouldn't let him throw himself from a perfectly good airplane. Seems he had a DREAM the other night that I'd gotten my way and we were at Lake Tahoe skiing. As he was negotiating the ski slope he was hit by a hot dogging snow mobile driver and had his leg broken in the collision. As they were hauling him off to be fixed up, he was shouting at me "you wouldn't let me sky dive because it was too dangerous, brought me skiing instead and now look what happened." Maybe I'll rethink the parachuting, not.

 

Long road ahead of us gang. I've looked but can find no one of the yellow available. Recovery will take a lot of time. I've asked before, now I beg, patience please. NO NEWS IS GOOD NEWS.

 

Peace be upon you all.

 

Wilson

Brother/Cousin

4th of 3

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