Reception for Denise June 17, Pasadena CA

Here's your chance to meet the gal you've been pulling for!

We're officially welcoming her home!

Reception for Denise!
Saturday June 17, 2006
(afternoon... specific time TBA)
Pasadena Christian School Auditorium
1515 N. Los Robles Ave.
Pasadena CA 91104

The "Oh no... when is something going to go wrong?" feeling is diminishing. That Denise is still alive, improving, and home is something to celebrate. Thank you to all the people that worked on her, cheered her on, prayed for her, and in all ways supported our family through her hospital stay. We hope to see you on the 17th.

Picked up Jacob, Another organization, 100,000 hits

Things are still crazy-busy for me, and tomorrow I hope to have the time to post the details of some recent medical developments with Denise. But here are a few bits of good news for now:
Today Denise was able to get down onto the exercise mat on the floor and back up again unassisted. A couple days ago she picked Jacob up out of his booster seat, and today she was able to pick him up off the floor and hold him in her arms for a short time. All of these things are major steps for her. And not to brag, but today this blog crossed the 100,000 hits mark (the counter's way down at the bottom). Thanks for caring enough to keep checking back on Denise over the long haul.

ADDENDUM: My mom would like to add City of Hope Cancer Research Center to the list of organizations to consider donating to in memory of my dad (see the previous post for the rest).

City of Hope
1500 East Duarte Rd.
Duarte CA 91010
(626) 256-4673
They have an option of giving a gift in someone's name that includes a card:
Click here to see how that works.

Memorial service info for my dad...

Sorry for the delay in posting. My dad's hospitalization, death, and related "business" has kept everyone busy. A few weeks ago my parents started the process of getting into a retirement facility. So my mom, in addition to losing her husband of 36 years and having to plan a memorial, is also having to downsize immediately in prep for putting their house of 35 years (there was enough stuff in the garage to prove it) on the market and tie up loose ends in order to move into the retirement facility. My mom says she couldn't have accomplished anything without help from us, my brother's family that drove down from Oregon, Denise's caregiver, my dad's long-time buddy that drove down from Mt. Shasta, my nurse aunt's family, and some great neighbors with pickup trucks that were able to haul stuff off.
I had the week off from work for Easter vacation, and had scheduled lots of appointments for Denise. Those were loaded with encouraging news, and I'll relate the specifics in another post. We postponed Jacob's birthday party. Even though my dad wanted Denise & I to go ahead with it and carry on "business as usual," we didn't have the time or emotional fortitude to throw a party yesterday.

Memorial service for Dick Williams
Saturday May 13, 2006
10:00 AM
Ontario Church of the Nazarene
1311 West 5th St.
Ontario CA 91762

Quite a few people have asked for my mom's address, so here it is.
Pat Williams
5332 El Monte Ave.
Temple City CA 91780
626-442-1794

Those of you that knew my dad well will not be surprised by him not wanting anyone to "waste" money on flowers, preferring that you contribute the money to one of his favorite organizations to make a lasting impact instead...

Camp Eagle Rock/Inner City Ministries
3960 Prospect Ave. K
Yorba Linda CA 92886
(714) 854-9300

Salvation Army
615 Slaters Lane
P.O. Box 269
Alexandria, VA 22313

National Rifle Association
11250 Waples Mill Road
Fairfax, VA 22030

U.S.S. Hornet Museum
P.O. Box 460
Pier 3, Alameda Point
Alameda CA 94501
(510) 521-8448

Dad passed away this morning

I regret having post that my dad passed away this morning, officially pronounced at 8:25am.

I rejoice in more, though: He died with no suffering or struggling, peacefully slipping from sleep into eternity. My brother & sister-in-law were with him, so he was not alone. He's probably singing with J.D. Sumner & Jimmy Blackwood & a bunch of his other quartet heroes right now. The memorial service will probably be the morning or afternoon of Saturday May 13 (in classic Dad fashion, on a date & time that doesn't interfere with a quartet convention, concert, or the opening of any of the major hunting or fishing seasons).

My mom's the one to pull for today. I was convinced that Denise was going to die a few times. As abysmal as I felt in just thinking my spouse was going to die, my mom's crossed that line and must feel worse. The worst day of her life, no doubt.

I'm still good with all this. Everything got said, no regrets in the relationship, he was happy to be visited & called by so many friends (and hear the emails), and he told my brother & I about any loose ends to tie up for him. Nothing left to worry about. The last time I asked him if he was scared, he still said "Nope." All this pours new understanding into the phrase, "It is finished."

He told a friend (and the other day also told Denise) that he only did the chemo because he wanted to be around long enough to see her get better. I'm glad that he got to accomplish that. Today marks nine months to the day that Denise started her hospital stay.

Dad sedated, Last hours?

My dad had to be sedated (Ativan, just like Denise) around 1am or 2am this morning. He slept most of the day yesterday but he became disoriented & anxious yesterday evening. It reminded me of Denise before she had her seizure. He was not connected with reality, fixated on distances, measurements, angles, tolerances, positions and directions. At one point when the nurse and I were moving him, it sounded like he was saying a few things in Hebrew (he was teaching himself a few years ago; he wasn't speaking in tongues). He started to pull things out overnight. He is currently breathing about once every 20 seconds and not suffering or in any pain. My brother, sister-in-law, a boyhood friend, and a quartet friend rotated shifts with him overnight so he wouldn't be alone. I haven't talked to the doctor or nurse, but my feeling is that these are the last hours. My mom's been called and I'm leaving for the hospital right now.

Dad expected to live days

I know that the focus of this blog is Denise. But for the next few days I will also be posting updates about my dad, since so many of you that have been praying for Denise are friends of my parents. We've been getting some harsh news about my dad since the last post. Today we learned that his life expectancy is being measured in days, not weeks or months. My mom's setting up hospice care. My brother and his family came down from Oregon with their kids the other day. Among the cancer tumors he has, the ones in the lungs are causing increasingly labored breathing and discomfort. In talking to the doctor about what to expect from here on out, I felt like I was back at Arcadia Methodist, discussing Denise (respiratory inefficiency, labored breathing, irritation & coughing, morphine, panic, Ativan sedation, coma, no suffering, death caused by respiratory failure). He's able to talk and is in relatively good spirits, still trying to square away business to take care of my mom, all done with a "matter-of-fact" attitude. He also has a "see you later" attitude. Interesting, considering that today's Easter, and our belief in the resurrection of Christ is what gives us that "this ain't all there is... see you on the other side" hope. I'm doing almost disturbingly well with the situation. Part of it is that my dad's attitude is comforting. Part of it's that our faith is comforting. And maybe part of it is that I'm just so used to dealing with Denise's situation for so many months that I'm numb to it and can deal with it almost too calmly. The abnormal has become normal.
I learned from the darkest days of Denise's hospital stay that people in general are pretty ill-equipped to deal with pain, suffering, and death. I know that I never knew what to say, so would generally not say anything to someone that I knew was going to die soon. But I'm confident that my dad would rather hear or read awkward words from his friends & family than none at all. I don't see a link on Kaiser Hospital's web site for sending email to a patient. If you want to send an email to my dad, I will print it out and take it to him to read, just as we had set up for Denise. Email him at dpwilliams7@yahoo.com. If you send an email, please make it personally directed to my mom and/or dad. Please do not forward anything to them. My time is already filled with business relating to Denise, and 99% of forwarded material is either a hoax or something we've already heard before.
On the very positive side, last night my dad said he'd rather that we go to church than rush to the hospital first thing this morning to see him. So we went to church. Among the songs we sang was "In Christ Alone," which is a favorite of Denise's & mine (we had the lyrics taped to the wall during her entire hospital stay). Since EVERYONE goes to church on Easter, lots of people that had been pulling for Denise got to see her for the first time today. Later, Denise & her youngest sister had a great visit with my pop at the hospital. They sang & had good talks.
And last night was neat, in a bittersweet way. One of my dad's friends came by for a visit and told me that during the summer, they had talked & wept many times about Denise. My dad's friend said that my dad decided to go ahead with a couple of chemo treatments, even though he didn't really want to. He wanted to be around long enough to see Denise get well and leave the hospital. That he did.

Getting stronger, Dad in hospital

I know that this blog is "Pulling For Denise" but there are a couple other people to pull for mentioned tonight. I hope you don't mind. First off, let me tell you about good things with Denise.
Denise continues to improve. She's a little sore, but only because she's trying to work out with more & more weight and range of movement. Yesterday she helped prepare two meals. Yum! She's also having a much better time at home than in the hospital. I heard her walking around just a few minutes ago. It's weird how I got used to the sound of her gait before getting sick. Now when I hear her walk around, it sounds like a stranger's in the house because I'm not used to her "new walking sound" yet. But I'm glad to hear it, just the same. We've got a whole bunch of doctor appointments lined up for this coming week. So much for a relaxing Easter vacation, huh?

I took my mom & dad to emergency this afternoon and my dad was admitted to the hospital tonight. Apparently he's got an infection and they need to do blood tests and keep a good eye on him for the next couple days in case he goes into septic shock. Last Sunday he told me of pain in the hip area. I badgered him about calling his doctor, but he didn't think it was necessary. He only mentioned general aches to my mom, and he didn't say anything to his oncologist when he went for a chemo treatment on Monday. Yes, he's trying another round of chemo. Apparently one of the drugs that he did respond to (5FU, I believe) was not manufactured for a period of time and only recently became available again, so they're going to try it on him again. Anyway, today he had pain in his lower right back to the point that his doctor wanted him to go to emergency. As of the last I heard when I left tonight, there were no hospital beds available at Kaiser Hospital, so they were planning on keeping him overnight on a gurney in the emergency section.

I feel compelled to mention some sad news concerning extended family members that've really been pulling & tugging for Denise. Immediately after posting the last blog entry, I learned that my great uncle & aunt from Washington (the great uncle that flew down here a week or two ago when my other great uncle died) had just lost their daughter. Imagine that... losing your brother one week and your daughter the next. She'd been battling illness for decades and had been in & out of the hospital almost too many times to count during that time. I am reminded of something I heard from a friend that said parents are designed to do lots of things, but burying their children isn't one of them. I thought of how devastating a feeling it was to lose baby Daniel back in July, and can't help but think that it must be even worse to lose a child that you've gotten to know for several decades.

So a little extra pull for some family members aside from Denise would be appreciated right about now.

PCP appointment, Watch ascites, Jacob's 2

Jake's two years old today. Here's a picture of Jacob with cake frosting on his face, and a big smile on mommy's face. Later this evening, Jacob came pitter-pattering into the room, wearing that wig that Denise has on her head. I'd post a picture but I'm still traumatized. Oh, the birthday party theme is now changed to trains. That was on clearance sale but the jungle stuff wasn't. Easy choice. I thought perhaps Chinese food would be appropriate for a railroad theme.
But Greek food won out. Why? I figure it's because she was in the hospital during the Greek festival last September and she missed out. Makes perfect sense to me.
Denise's appointment with the primary care physician was productive. He wrote the necessary note to get Denise declared disabled. That'll open the door to some services if needed. He also wanted us to see the GI doctor because the feeding tube wound hasn't closed up yet. Also, we need to keep an eye on the ascites (fluid buildup in the tummy area).

PCP appointment tomorrow, Disability declaration

Sorry for the long pause between posts. Been busy, but mostly with good things. We've been trying to get Jacob's birthday party all planned, and just tonight we're thinking of switching the theme from jungle to trains. Part of this is due to Jake's sudden fascination with trains. Part of it's due to not being able to decide what type of "jungle" food to serve... Thai, Filipino, Vietnamese, South American? Too many places with jungles have great food, so it was too hard to decide. Now I'm scratching my head and wondering, "What's train food?" So we might be returning the jungle props that've been loaned to us. Now if anyone has train props we can borrow for the party, please contact us and stand by...
Jacob's birthday is tomorrow, April 11. But the party's April 22, and that happens to be Denise's birthday, so we've got to rush. Trivia: Denise and Jacob were both born on Easter of their respective years of 1973 and 2004. I don't think either of them will have their birthdays fall on Easter for several more decades. Anyway, Denise didn't want to do anything to take away from Jacob's birthday bliss. So I'm getting the ball rolling about planning a reception for Denise instead of a birthday party, probably in June after school winds down. Check back on the blog for some details. That'd be great for you to meet her and see the results of all the hard work, pulling & tugging you've done on her behalf since last July.
As far as medical things go, Denise is doing well without her feeding tube & PICC lines. She has an appointment with her primary care physician (PCP) tomorrow. This is the doctor that will see her regularly from here on out. The infectious disease doctor thinks it's safe to check in with her on a monthly basis for a while. Denise's vision & mobility problems are such that we're trying to get her declared disabled. Our city doesn't have a Dial-a-Ride, but we've started the paperwork for her to be accepted for Access Services (disability transportation). The paperwork for all this makes us cross our eyes sometimes. Wouldn't life be great without all the red tape? Great, that is, except for all the people that owe their livelihoods to the existence of red tape.

Feeding tube & PICC lines removed

Denise has no more hospital artifacts left in her body! This morning the home care nurse removed Denise's PICC line. Then we got a call from the Huntington Hospital saying that they had a cancellation and they squeezed us in for an interventive radiology appointment to remove the feeding tube. Denise said they glued her wound closed. She couldn't eat or drink anything from late morning (when the feeding tube was removed) until evening. For me, having the last two tubes removed was psychologically a bigger deal than getting her out of the hospital this last time. With the last discharge, I was waiting for something to go wrong. But with these last two hoses being removed, I feel like things really are getting back to normal.

109 pounds, GOOD NEWS from ID doctor!

Denise weighed in at 109 pounds without shoes. The doctors are talking about removing the feeding tube and the PICC line. Wow! Two more steps toward normalcy.
Better yet was an appointment with the infectious disease doctor yesterday that was fairly hefty in the good news department. He thought the liver felt a little smaller. That Denise's liver was full (packed) with granulomas (typical cellular reaction to infection) is quite impressive. Apparently her body's been able to muster the appropriate responses to infections. As a result of the granulomas, he expects liver enzymes to be off and fluctuate at times (AlkPhos up to 394 from 318, SGOT down to 82 from 89, SGPT up to 182 from 134, all labs drawn one week apart). The ID doctor is comfortable with drawing liver labs every two weeks now (rather than every week), and there was another titer drawn that will be sent to UC Davis for evaluation. He also commented that he thinks the cocci found in the liver biopsy was dead. MAJOR RELIEF to not have that stuff be new or active! Enough about livers...
The ID doctor said that he thinks the rash Denise has is more acne than anything, and thought that sweats & ongoing bad dreams are not typical side-effects of voriconazole (yes, odd that it started with her switch to that antifungal med, but he's the doctor and I'm not). He thinks that the Diflucan (a.k.a. fluconazole, the previous antifungal med) must have been the cause of the nausea that landed her in the hospital a couple weeks ago. Still not sure why her manic phases started or stopped.
Other questions he answered were that yes, Denise CAN still eat mushrooms. Yeah, we're paranoid to think that eating a fungus would have anything to do with a fungal infection acquired via inhalation. But then again I've heard & seen all sorts of unbelievable things during the last eight-plus months. Also, Denise CAN go to Coalinga (central California valley city where her parents and the cocci fungus live), but not when it's dry, dusty or windy. Apparently what she's been through, and possibly developing a resistance to one of the antifungal meds, puts her at a higher likelihood of having a flare-up if the conditions are right (or completely wrong, depending).
Yesterday my dad & I went to visit my grandmother and a great uncle that flew in from Washington, the siblings of my great uncle that died last week. I guess that nobody knew how bad off my great uncle was and upon reading my blog post that he wasn't expected to live much longer, my great uncle from Washington decided to catch an earlier flight than what he'd planned. As a result, he was able to see his brother hours before he passed away. Though the circumstances were unfortunate, I'm glad that this blog was able to play a part in allowing them to see each other one more time.

Afternoon at the park, Fresh feeding tube blood

Here's a picture of Denise's first time at the park with the kids since coming home. You can see the PICC line still in her left arm, and the end of the feeding tube dangling out from under her shirt. As time marches on, the likelihood that those can safely be removed increases. We didn't get to church today (no, we didn't miss the time change). Jacob's much better, but still had a fever this morning & we didn't want him to expose any of the other Sunday school kids to his sickness. Denise helped prep a meal, clean up, fold laundry... all these "everyday" tasks are building strength & endurance for her. She had some fresh blood at the feeding tube insertion site. Other than that, she's doing well. I'm trying to sleep, but I wake up at her every cough, sigh, snort, click... whatever. Really, she's not that noisy a sleeper. I'm just paranoid and check to see if she's OK every time I hear a sound. We've got a couple important appointments early this week, so we'd appreciate your continuing to pull for Denise. We'd like to hear some good news from the infectious disease doctor in particular.