Here's a picture of my 124-pound wife & I from my school's open house on May 11. Right now you may be thinking, "Phil in a suit? A miracle!" Fair enough. But we all know that Denise is a walking miracle, several times over. People were stoked to see her at the open house, and looking so well to top it off. In the past it's been easy for her to feel like she's in my shadow when around people that I know. Not lately, though. There were more people interested in seeing Denise at open house than people interested in seeing my room (or talking grades... whew!). We also went to a fundraiser dinner for my school the next night. Again, Denise was greeted by endless well-wishers that were surprised and happy to see her.
I'm sorry it's taken so long to post things. This information is from about a month ago. Life HAS been that busy. Today marks ten months since Denise went into the hospital, about a month and a half that she's been home, and one month since my dad passed away. Much has happened in that time, and there's lots still to do. My mom's house went on the market on Monday, open house will be Sunday (anybody looking to buy in Temple City CA?). It and the grounds look great, thanks to some fine people from my school (and their friends) that pitched in last-minute to clean things up. Long post coming, so make yourself a sandwich, grab something to drink, and then sit down to read this...
GI & cocci status:As of the last we heard, the liver biopsy was not growing any organism. She has a GI appointment tomorrow. Her last GI appointment in April was interesting. The doctor thinks that the cocci is still there and just hasn't grown
yet. He thinks it could take months to grow. Doesn't that sort of send a chill up you, too? He thinks the current antifungal med (voriconazole) is working though, due to how good she looks and how well she's eating. He wanted to let the wound where her feeding tube was heal on it's own, because stitching it up would close the infection inside. Denise's caregiver is doing a great job of keeping on top of the wound care (and everything else). There is still ab swelling (accounting for much of her weight), but we still think that it's ever so gradually subsiding. The GI doctor didn't want to do a paracentesis and risk any infection. We'll see what he thinks at the appointment tomorrow. Some have emailed privately to ask why Denise isn't being seen by a hepatologist. That is a possibility, but so far the big boys think that the liver function is bouncing around within a reasonable margin. If things get really whacked out, then she'll get bumped up to seeing a hepatologist. Yes, *a* hepatologist, not *an* hepatologist. See, here in the good ol' U.S. of A., we use & hear that beginning "h" sound for many words, eliminating the need for "an" in front of most "h" words (smirks to an english teacher friend, who would write an history, but never eat an hot dog or pound nails with an hammer). But enough of that...
ID & cocci status:From an infectious disease standpoint, there was some good news a couple weeks ago. The titers (measures of concentration of cocci) did not increase. That's an encouraging sign. The ID doctor said that apparently the cocci that did show up in the liver a while back was dead, and would assume the same for the cocci in brain. Again, encouraging. He added that the granulomas (oversimplification: defense mechanism against infection) in Denise's body might attest to her strength, indicating she's strong enough to mount a defense. He's comfortable having me take Denise to get regular blood draws at a lab, and bringing Denise in for ID appointments less frequently, as long as the titers & liver labs don't show anything alarming.
Neuro status:The neurology appointment was also about a month ago. The neurologist was pleased with Denise's improvements. He halved one of her meds (she was already on a very low dose) and admonished her to stay out of the sun, as that can cause a rash with the med. He also wrote her a note to try to get us off the hook for her little TV shopping spree she had during that manic phase in March. It seems standard that the TV shopping outfits charge a 15% restocking fee. With a doctor-signed letter explaining what happened, the companies have been very nice about not sticking us with those charges so far. He's not sure what to make of the effects that the cocci infection is having on the brain yet. For that matter, none of the doctors can tell us what to expect, since records of survivors of what Denise had, under her circumstances, are nonexistent. She is the test case and the pros are learning from what happens to her as we go along. Nobody can tell us if her survival will be measured in months, years, or decades before (or if) the cocci flares up again. So that's been a little frustrating to me at times... until I remind myself that none of us knows for sure if we'll be around tomorrow, or in an hour for that matter. So every morning that I wake up and find that Denise is still alive and feeling well makes for a pretty good start to the day.
Leaps & Bounds Dept.Denise went on her first errand with her caregiver yesterday. They took the free Duarte city bus to get some groceries. That was a major help, and Denise was proud that she was able to add that task to her contribution to running the family. I sure appreciated the surprise of her calling and telling me not to worry about stopping for groceries on the way home from work. Even though she gets around the house by walking now, she still needs the wheelchair for longer trips. There were only wheelchair ramps at a fraction of the places she needed them, none leading up to the bus stop, and the driver overshot the stop and then didn't lower the wheelchair ramp for Denise. Yeah, there are a few kinks to work out. When I was in college earning my child development degree (no, my degree's not computer-related... now it's scary that I'm a computer teacher, huh?), one class dealt with disabilities. The professor had a couple wheelchairs and gave us the assignment of spending as much of a typical day in one as we could. That assignment was an eye-opener for me (and very handy years later when I had my knee reconstructed). So even though I'm not the one in the wheelchair, I can understand Denise's frustration fairly well.
Memorial:As I said earlier, my dad's been gone a month. Thanks to everyone that came to the memorial service. It was one of the best-sounding memorials I've ever been to. I think I need to start hanging around southern gospel quartet crowd, too, so that when it's my time for a memorial, it'll sound good. The slide show of my dad was outstanding and memorable, and several people asked about how to get a copy. A friend did it for us as a courtesy, and he sure would appreciate your business, either by ordering my pop's tribute DVD or giving him a fresh business project. You can contact him by visiting
Top Hat Video Productions. He did a bang-up job (in a good way). I'm truly sorry that I didn't get to spend some more time visiting with some people that I haven't seen in years. On the other hand, it was awesome to meet so many of my dad's friends for the first time, and hear almost all of them say that they were following Denise's situation. The world got a little smaller that day. I'm sure I'm forgetting something or someone worth mentioning, but that day (and the days before & after it) has been a blur, and my mind is still swimming. The interment on Monday at Riverside National Cemetery was not what I was expecting (my great uncle's interment will happen at the same cemetery tomorrow). The staff was pleasant (I thought that the groundsman that fastened the marble plate over my dad's niche was especially respectful & the least "business-like"), but overall I was a little disappointed. There is apparently a shortage of military personnel (I saw none that were active), so taps was played through a little speaker by pressing a button (no bugler) and there was no rifle salute. The flag was already folded at the memorial service, so nobody was needed for that honor. When my brother & I set my dad's ashes into his niche in the wall, there were some very loud walkie-talkies squawking constantly from nearby maintenance vehicles, about everything from discussing the backlog of guests, to directions about where to deliver sprinkler heads. Also, there was plenty of noise from the busy boulevard just on the other side of the wall. Burial with military honors was nothing like in the movies.
Cadillac:After the interment, my brother, my dad's life-long friend and I went to pick up a car that my great uncle wanted to go to my brother. It's a
1976 Cadillac Eldorado convertible, runs & looks great. It's over 5,000 pounds of 9 MPG Boss Hogg car, but blue, and no bull horns on the hood. Yet. Gracie & Jacob played house in it. Now that the car's out of my great aunt's garage, my great aunt has enough room to play tennis in there if she wants to. The car has a leaky gas line out of the tank, so we didn't want to drive it like that, gas prices being what they are. Fortunately, my brother had AAA and got a free tow from Riverside, straight to our house. Being that it needs some fixing, it'll stay with us until my brother can drive it back up to Oregon. In the mean time, that baby adorns most of my driveway. I personally think that I've got the coolest-looking house on the block, thanks to that car. I hope to drive Denise & I to my school's graduation ceremony in it. I've also been borrowing my dad's old car (all of us plus Denise's caregiver can fit into it), so my neighbors probably think I'm opening a used car lot.
