WalkerPad

In brief Charise is doing well. No new developments really. She is currently backing (slowly) off of the steroids. This is making her tired and weak, though not as bad as the last time we tried this. Originally they had her come off of the steroids pretty sharply and this resulted in a lot of numbness on the left side and some other problems. This time coming off seems to be going a bit better but it’s hard since it almost feels like we are sliding backwards a bit in recovery, though we rally are not… I guess those things really do work, no wonder they are so popular in sports :p.

Before image above (I added the red outline of the tumor to help distinguish it since the export images are low resolution.

After: note how the contrast is now the same across the image.

The before is about center mass maybe half way through Charise’s head. Think of it as a animation flip book that is going down instead of across, or a linear slices of a 3d image going down if you want to dispense with the analogies .

A small sample Gallery is here, showing more of both series for comparison. I have a couple smallish AVI’s I’ll try and get up that show both sets larger and more film like (easier to digest at a glance).

So I was trying to take some trash out, and was greeted at the door with "up Daddy up!". After some negotiation Kaily and trash where maneuvered outside, where we paused to look at the giant moon floating just above the roof tops. Kaily said, "This way please" indicating toward the street and the moon. I walked out a few steps, as she kept her arm out, and stooped. Kaily gave me a confounded look and said "I can’t…. I can’t reach it Dady…" and she reached up and up again toward the moon.

So…. as is often the case are visist to UCSF consisted of something good something bad and something else.

The MRI of Charise’s spine looks clear. The Doc is waiting on a final report by Radiology but seems pretty comfortable with what they are seeing. Yeah!

However he felt the need to confront us with some rather stark facts about tumors, the nomenclature, and what will really happen.
Here is the deal, it is functional pretty much impossible to get rid of a tumor like this completely. There will always be something left at a microscopic level, and it is going to grow back. That being said the window could be anywhere from 5-30 years. So… we can plan to have a lot of MRI’s over time, but that is not bad in and of it’s self. What is bad is that with current technology any radiation treatment to the brain will cause damage tot the blood cells and this is absolutely guaranteed to cause problems later in life (much later). The problems are oddly reminiscent of the issues we are seeing now with speech, weakness on one side, balance etc. So the question would be do you wait and see and risk the tumor spreading to the spine or treat it and guarantee reducing a certain amount of coherence in old age (60-70-90+ just impossible to really say with current medical knowledge).

*Ugh*

While it’s all pretty much a long way away at this point none of it was exactly comforting to hear, though definitely good to know.
I get paid a fair amount of money to be very conversant in technology growth and change. Twenty years from now I find it difficult to guess what we will be doing in any industries driven by high tech much less in medical fields that tend to move in slow but really big surges. Perhaps by the time it’s relevant to us the problem will be easily resolved with new high tech zapers with 100% accuracy and no bleedout…anything is of course possible… but that is not quite comforting enough late at night .

Really though it was a day of good news, just a little rainy for all that.

I also have two CD’s full of MRI data. They are pretty hard to work with but I’m going to try and get some before and after shots up for everyone to check out. Pretty interesting stuff to look at.

Just finished the spinal MRI. We will be getting the results back this afternoon at UCSF. Hopfully it will also be clear and we can sail along the recovery road with no radiation detour.

Just a quick bit that I forgot to mention. They classified the Apendenoma as a type 2. 1 being the slowest growth and least problematic to 4 being the worst. So this effects how often we will need to get MRI’s and have general on going check ups over the years.

For those who are wondering the hospital stay, not including the surgery and anesthesiologist etc, was over a 160k. Pretty crazy stuff. The break down of the itemized list is pretty mind boggling and I don’t think is complete (not sure all the MRI’s at 12k a pop are on there). This also doesn’t include the ongoing care and therapy. I guessed the whole thing will be in the 500-600k range but I guess judging from what I have seen so far that I could be low. So possible more then the value of our house, which we will likely be still paying off when we are 90. I won’t get on a universal health care soap box, but ask yourself what you would do without really good insurance like we have… I certainly have had a lot of jobs with little or no health care and most don’t scale very well to calamity type situation, having to pay 50% plus outside of a cap could put a real cap in the ol’ Christmas stocking.

Ok, done.

Some pictures of the staples and stitches being taken out.

We are hopping that Charise will be able to return to school after summer break (she will be out on disability, sort of. Teachers don’t actually get state disability, so this should be interesting. Full recovery could take a year plus given the size of the tumor (picture a avocado). She is making some really great headway though so we are not to worried about the worse case scenario at this point.

We also switched around a bunch of the stuff she is taking, so hopffuly she will be resting a bit better this week.