Details ...Details

10/29/2009

Some of you might remember some questions I had September 17 about blasts. At that time I considered the possibility that our treatments could be gauged improperly, because we were assuming the blasts in his peripheral blood were always all leukemic blasts. (The manual diff. doesn't separate the count of normal and leukemic "looking" blasts)

There were things I did for Jaymun through the course of a week, that could cause transient bursts in cytokine production and as a result normal blasts circulating in peripheral blood. However, if we weren't distinguishing the difference, then whenever we saw blasts we would think bad things were happening, and we would start attacking his disease again, when we could either have been giving him a break to heal and/or taking advantage of the recovery. This little detail might help shed light on whether platelet level variations were from tumor size or from inhibitory/stimulatory medicine.

Since shortly before that day (Sep. 17), I have been trying to see the actual slides, or at least digital representations of the information used to perform the Manual Differentials. That way I could:
   #1) Perform my own manual diff. and make sure we had the extra information
   #2) Post the images here along with daily labs, so the world could see
   #3) Maybe even count more cells (than 100 or 200 per slide)

I've been getting the "run-around" from the hospital since then. Maybe it is just because I'm asking for something different, but I had wanted especially to look at the slides from days like the 23rd and the 27th, so I could have saved time and guess work when making critical decisions. But there was silence until 4 hours after Jaymun died. And then they sent incomplete pictures (small scopes or single cells) and only peripheral data from Sep 4 and Sep 18 (missing Sep 8, Sep 12, Sep 16 that I had requested).

You might say at this point, what's the use? ...it is too late to use that information to help Jaymun.
But I want that information to be part of the record to help others. Why should this have gone for nothing ...all this struggle? Jaymun dying miserably from avoidable complications?
Forget about questions like: were chemo and Dilantin making his chloromas worse the end of August
Forget about the Sep 25 MRI and what that incident caused or proved.
Forget even about the questions about his admission, goals, and methods employed September 28/29.
(whether or not we should have stopped the herbs, re-loaded him with phenytoin and dosed him with dexamethasone)
(the cns tumor was probably driving his intra-cranial-pressure, not the brain-bleed)
Even forget about intensive care "what-if" questions like: since his bleed was resolving (already as we walked in the door), what if we hadn't done osmolar (sodium) therapy ...would his kidneys have failed? Or what if the blasts during his last weeks were partly normal ones ...would we not have decided to change Jaymun's code? Would we have tried dialysis?
The critical lessons I'm addressing have to do with his September treatment. My goal since September 4, was to get Jaymun back into remission without needing blood-transfusions or becomming neutropenic. From reviewing the data it looks like we were close to achieving that goal     ...with about $275 worth of herbs and spices.

Since shortly after Jaymun died on October 13, I redoubled my effort to secure these peripheral blood slides, just so I can have peace of mind, and so other parents reading Jaymun's web site will be able to evaluate more completly what happened. They finally sent me some digital pictures, but they either missed critical days I wanted to analyze, or they weren't of a scope/quality to do manual diff's, or they just zoomed in on a single leukemic blast proving that there was at least one bad cell on the slide (not what I wanted to check ...I wanted to check percentages on very specific days).

I've talked to multiple lab personnel, asking them to save the slides so I can get them.
I had our family doctor request the slides just to make sure they were saved.
...however on October 19th I found out that the lab at Children's Hospital has a "two week throwaway" policy.
At that time they went back into the "throwaway" box to try to save slides from prior to the 5th, and I was assured they had saved what they could.
However, when I called last Friday, it seems they hadn't. The clock was ticking again, and that even though I've been asking (multiple phone calls and emails from me and our family doctor) they had now thrown away everything up till the 9th, leaving only slides for the 9th through the 12th (which I am assured by the lab director are now safe in her posession).

After going back through countless details the past months, I feel information about calibrating the September treatment is very important. I even offered to do a fundraiser for Children's Hospital and get them a better microscope (if such a thing exists) that could zoom and digitize an entire slide with high enough quality to do the manual differentials. My idea was then the doctors wouldn't have to go into the lab to see the slides - they could all be computerized.

This situation may clear itself up in the next days.
Possibly the person who told me she saved the slides from early October (prior to the 9th) will discover them.
(the same person who is "not in the office today" every time I call now)
Possibly I can find someone to take the pictures quickly (the slide quality does fade over time) so I can post them here.

And possibly there is not important information there, and I'm getting worked up over nothing.

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