Robb continues to improve in most functions, though he is extremely tired. This past week was a whirlwind of insanity. But now that I’ve had some time to review Robb’s lab data with the surgeon and Gar Hildenbrand, I think what happened to cause the crisis last week is becoming a lot more clear. CAUSES 1) Too rapid of a steroid taper after surgery. This would have had Robb off steroids in 2 weeks, as opposed to 3 like the last surgery. 2) Aggressive immune boosting before surgery (even more than we’d ordinarily do), which set up Robb’s system to override the steroid suppression once the BBB was breached and the surgeon’s scalpel created massive amounts of danger signals. EFFECTS 1) Performance decline starting 2 days after surgery and progressing each day in proportion to the steroid lowering. By the time we returned home last week, Robb was only on 8 mg. steroid (as opposed to 12 last surgery he was released from hospital) and he’d been started out at 40. His brain was already under considerable stress at that time, as evidenced by him sleeping for around 18 hours after we returned home. 2) Massive inflammation on Wednesday morning when I called the ambulance, bordering on systemic inflammatory response syndrome as evidenced by vasogenic edema in the brain resulting in reduction in consciousness, a white count over 200% normal, puffy face and greatly elevated BUN (blood urea nitrogen) suggesting poor elimination of toxins due to the liver and kidneys being overwhelmed, slight fever, and increased respiratory and heart rate. The answer to this whole mess was to shut it down with a massive dose of steroid. After several days’ observation, where they again tried to lower his steroid dose too rapidly after just one day, this resulted in unstable function leading them to think Robb would need to be released on Hospice or put in inpatient rehab. I knew putting him in rehab would kill any desire he had to live and that he needed to be at home. However, at that time, I also knew I couldnt deal with his deficits alone if they were permanent. We have not needed Hospice and I don’t anticipate we will. Now, his walking is decent without assistance for short distances across the room and I dont worry about him needing someone for balance at those short distances. (Have not yet had the chance to observe longer distances, but I feel confident much of this is pure exhaustion.) His expressive and spontaneous speech is much better. He also expressed interested in initiating conversations, which he hasn’t done since the day after his surgery. There are other improvements but it’s too much to go into. Robb does not remember much of the past 10 days probably due to trauma, so his current debilitation is VERY confusing for him. He has no idea what the hell happened. Yesterday, I explained what we think went wrong (in terms of an overactive immune response) and he started crying in relief. I then discussed several developments regarding his work correspondence for the first time in a week, and his reactions made clear to me that he understood exactly what I was talking about. Because of his progress and his obvious will to live, we will be going back to Mexico very soon. We really need the capacity for daily blood work and another MRI to figure out what’s going on with Robb, and how that should inform several aspects of the therapy, such as doses of Leukine, Coley’s, and tumor lysate. I just don’t think I can do this at home without labs to inform the dosing, as another big immune reaction would risk his safety and function again. The anti-inflammatory and nutritional support of some of the IVs would also be helpful. As such, the plan is to go back to Mexico soon so that we can get Robb well again. We will drive this time and bring the dog with us. The place we stayed the first time (yes, Mr. Baking Soda), has a gated garage to park the car.
Posted on: Mon, 10 Nov 2014 14:41:38 +0000
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