WalkerPad

Ok I ground my way through them and the pictures are up in the gallery. I don’t think I did the party justice though, I was a bit sick and not really taking many pictures once things got rolling.

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Also I have bunch of new artsy shots up on Zooomer as edgshot 

Enjoy and sorry it took so long (see lower post, *grumble*)

I was hoping to add dads but he couldn’t figure out Amazon wish lists, or something with his accounts. Looks like there UI could use a little work at least for the non technical… So anyway here is ours, and if anyone else wants to one or email me I’ll add it to the list for general family reference. Or you could all just hope you don’t get fruit cake and nitted socks =).

Kaily
Charise
Griffon
Yeah ok it *is* a wish list so don’t *tsk* me for rdiculously exspensive camera lenses and what not, I buy that stuff for myself (or well not these days :p ), but I use my list as a memory bank for such things :).

Another clean looking MRI, the Dr. was very pleased. Charise is having a couple issues but the thinks they should clear up in time and are not characteristics of anything new. All and all a excellent visit and positive result.

It was up to SF today for another cerebral MRI. Charise got a clean bill of health. The Dr. expressed genuine surprise and pleasure with how totally clean her head was. For those who don’t know they basically pump some nasty dye stuff into your blood stream and that will cause any tumor or irregular tissue to show up on the MRI as sort of day glow material. Anyway, Charise had none, and the empty area (heh) has mostly equalized with cranial fluids. So, all good news.
We have one more cranial and spinal scan in three months or so, and then we start going to every four months and then longer assuming everything continue to look as good as it does now.

Charise starts back to work at the end of the month part time. I’m a bit concerned with this given that the district has not exactly been showering her offers of help and support (though Dale and everyone at school have been great, special kudos to Dale).
I worry the DO might create issues or just elect to be deliberately inflexible. Like when Charise asked to see priority transfers (to know what her options would be when no partner was looking likely) and they told her “No” because she failed to have the foresight to fill out the paper work during the week her brain was being opened like a walnut and she was checked out on medical disability leave for her broken arm… which they where fully aware of. Made her Cry :(. Anyway that got corrected a couple weeks later but still, not exactly the sort of action that instills faith in those behind the system.

I’m concerned that without a classroom Aid she might hurt herself, it’s always surprising to me just how physical that job can be. The other concern is of course endurance, but hopefully part time won’t be to much, it just seems like when her battery runs out that pretty much seems to be it these days, no second wind.

Charise’s teaching partner is very new (first year, but seemed really nice) so that creates a different type challenge and work load for Charise. Fortunity Charise really likes to mentor so that should work out pretty well I think once they get a a good rhythm down.

I have a couple snarky things to say about the Google recruiting process (or at least their HR front line people) but I’ll save that for a different ramble.

Another follow up MRI today. I’ll up when we have the results. No reason to think it won’t be, there was just a bit of ocluded area on the last one.

Well, we got some more bad news last week. Looks like Charise’s teaching partner has decided that she needs to return to work full time (totally understandable given her own personal upheaval). Unfortunately the consequences of this is that it effectively leaves Charise with no job to return to after summer break (though she is guaranteed something by virtue of her tenure status, or so I understand).
I think the hardest part for Charise is that it looks like she is going to loose her classroom where she has 10+ years of emotional investment… oh and stuff, boxes and boxes of stuff.. that, I think, I’m going to get stuck hauling :p. Anyway this is pretty disappointing and not a change she was looking to make. But, hopefully, everything is going to work out for the best, one way or another.

On the plus side, we are starting to go through the motions of setting up a little side (tax-sheltered) business to help defray some costs and get a little revenue over the summer. More on that later.

There are a few new pictures of Kaily over in the gallery.

Charise’s head is healing up nicely.

Yep it’s that time again, Charise’s Birthday today! You forgot? I suggest Amazon wish list, and blame the shipping delay on them. She is the ripe old age of 35 today, I would make an infirm joke but…

I noticed this on DIGG, an intresting look at things to come thought this was used for the lungs.

http://web.mit.edu/newsoffice/2006/omniguide.html

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…. 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. 

Ok so we now have the final pathology back on the tumor. It is in fact a low grade Apendanoma (sp), meaning slow growth, and *benign* which is a super relief. They still need to do a second spinal MRI but the first one looked good. A couple areas were occluded do some post surgery clotting along the spine,  so anyway the second is mainly just precautionary at this point. So excellent news all around !

Now we just have to keep working our way down recovery lane (light is down there somewhere I’m sure of it) and keep working on the wrist physical therapy in tandem as well. Not to jinx us or anything but I think we are through the thick of it now and hopefully clearing the worst of the storm.

Ok a couple folks have asked…so, this weekend we have visiting hours 2-4pm Saturday and Sunday. If you want to come by at some other point just give me a call and we can see what will work. Between the dope and general fatigue it’s a little hit and miss so we need to keep things condensed down a bit. That being said Charise would love some company (must be getting sick of her Mom and Me ).

We received some beutuful flowers. Mallory and devon, Denise, Spragg, my Mom, Boby and Ed, Wes the other day… and on! I’m typing with my thumbs. They are making the room smell great. I’ll post some more pictures when I get home tonight.

The crainial swelling is going down a bit so looks like we are actualy on track for a friday jail break.

Well yeah, Charise is still a bit dizzy and not just in a blond way . I guess all those brain fluids are having to equalize or something.
Anyway, it’s sounding more like Friday now, her cranial swelling (which is causing the swelling, double vision, dizziness and pretty much everything else right now) still hasn’t gone down according to the CT today. Just a little longer though. To say she is getting ancy, well it might be a bit of a understament.

Her direct room number is:
415-353-8109

I’m sure she would love some calls though she is a little hard to understand still, I mean more so then normal :).