December 2006 Update: Merry Christmas!

Just a quick post to wish everyone a Merry Christmas! We're blessed to have Denise at home with us for Christmas this year instead of the hospital!
We've received some more positive medical news and visited some of the doctors & nurses from USC & Arcadia Methodist to show them Denise's progress... updates & pictures will come at the end of the month's post.
And yes, that *is* an official "Christmas Story" leg lamp Christmas stocking behind my head.

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November 2006 update: Meds adjusting, Throat healing, Healthier Thankgiving

Here's a picture of Denise during a "heart exam." Yes, her heart was racing, as well as Gracie's. Just look at those faces! Seriously, since her cardiac specialist said a couple months ago that her heart function is returning steadily, Denise thought it'd finally be safe to go on a "thrill" ride at Disneyland. After she got off, she felt "flutter-hearted and light-headed," and in hindsight didn't think it was a good idea to go on this ride. She never wants to go on it again. Neither does Gracie.

Thanksgiving this year was much nicer than last year when Denise was in the hospital and couldn't hold food down due to the SMAS. This year we spent Thanksgiving in Escondido with my nurse aunt's family, my mom and other family. Compare the recent blog pictures of her with this picture from last year: Thanksgiving Huntington Hospital 2005

Medical developments:

• Denise is trying to adjust one of her meds (Risperdal... neurologist gave her permission to gradually lessen the low dose she's on and eventually discontinue it). That's a bump & go situation. We're glad that Denise is able to sense what the increases and decreases in meds are doing to her and adjust accordingly.
• We have not heard whether any cocci has shown up in the cerebral spinal fluid from her latest spinal tap, and we're awaiting an MRI to ascertain the status of the meningitis or the scarring in her brain tissue. We have appointments with the infectious disease doctor and neurologist December 12. Since neither doctor has contacted us with bad news, we are optimistic that the news will be good.
• The surgeon that performed reconstructive surgery on her throat said that the scar is continuing to heal nicely.

Non-medical life continued to head toward normalcy in November. Denise's energy level allowed her to help a little with special class projects for Gracie's & Jacob's preschool classes (Stone Soup Days... it's really cool!) and go to a couple birthday parties for the kids in Gracie's class. Some friends from Coalinga came to visit us with their new baby. They hadn't seen Denise since she was in the nursing home early this year. Denise also went to a women's Bible study at First Baptist Church in Pasadena and finally got to meet a group of women who had been praying for her over the long haul. Denise also took care of the kids by herself for some of the longest periods of time yet while I was away at a teacher convention.

At this point I'd like to spotlight a couple other people to pray for.

• A while back I was put in contact with a guy whose wife has been in the hospital since September (hit by a car, coma, brain injury, small slow improvements, long rehab ahead). He's got two kids at home. I kind of feel like I know one reason why I went through what I went through: to be able to minister to another guy that's going through a similar thing now. He's doing almost daily web site updates on his wife. Bookmark this: http://caringbridge.org/visit/jenniferparent
  
• One of Denise's friends just turned 34 and is fighting aggressive breast cancer. She was a huge inspiration to Denise when in physical therapy. She's got a blog much like this one: Kristen's Cancer Battle
• A woman that I've never met mobilized many people in Tennessee and several eastern states to pull for Denise. Now this woman's dad needs some pull. So we set her up a blog to get the word out: Updates on Pola's Dad
• Finally, our family... me, mom, brother, grandmother (who lost both of her children and a brother within a short period of time). My dad died in April. The first set of birthdays & holidays are hard after the loss of a loved one. He would've been 64 this Saturday, December 2nd. He liked a fine brew or a dry gin martini almost as much as he liked southern gospel music. So, odd a combination as it is, I'll probably be toasting his memory with a martini (poorly made, but I'll try) while playing a J.D. Sumner & the Stamps Quartet CD in the background this weekend.

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October 2006 Update: Throat surgery, Titers 1:16, LP

That's one of Denise's sisters way to the left of in this picture. She visited from Montana with our newest niece. The last time Denise & her sister saw each other, Denise was still in grave condition at USC University Hospital last September. So this was a much happier visit! You probably can't tell by the look on my face. Out of all the pictures, this is the only one that had her whole family (actually, her youngest sister is missing). And it's my worst picture. At least I'm hanging with happy company.

The throat surgery Thursday October 5 went well. You can view the previous post for the details. Denise has taken to wearing scarves to cover up the scar while it's healing. She just went for a checkup with the surgeon this morning and he says it look like it's healing nicely.

We had visits with the neurologist & infectious disease doctor on October 10. They went well. We'll be going every two months now. Titers for cocci are now solidly within the 1:16 parameter, same as last time, so at least things aren't getting worse. And the neurologist gave us some latitude to experiment with small adjustments to one of Denise's meds as needed, based on how she's feeling (anxiety, obsessing, etc.). We're grateful that the doses are very low and her symptoms are very mild.

A lumbar puncture (LP or spinal tap) was performed October 26th. This was done to keep an eye on the presence of cocci in the cerebral spinal fluid. Fortunately, the fluid looked clear. So we're optimistic that no cocci will grow when the specimens are in the lab at U.C. Davis. Cocci is slow-growing, so we won't know the results for a few weeks. She will also have an MRI of the head early in November to see the status of the meningitis and calcification of the basal ganglia portion of the brain, two more areas of damage caused by the cocci early on. Prayers, please.

Gracie had her 5th birthday party with some preschool friends. Denise was in the hospital last year for Gracie's 4th birthday, so this party was extra-special. It was a princess party, but some boys came as well (they were knights). Everything's about princesses and Star Wars right now. Maybe we'll have a Star Wars party next year? Cool!

Oh, Denise says that she's more than reached her goal weight. So if you're still praying for her to gain weight, you can stop now. She's also started reading the blog for September 2005. She still hasn't discovered the full story of what happened to her, and it's a long slow process. I'm increasingly glad that I typed all this up, as it's helping her understand, and there's no way I could've remembered it all.

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Throat surgery went well today

Oct 5 outpatient throat surgery went well. It was a dual-purpose surgery. Part of it was cosmetic, and that went well. The other part was a bonus that the surgeon was able to fix after he opened her up. The skin on her throat had attached to her trachea, so whenever she swallowed, the scar on her throat would move quite a lot. It was uncomfortable. And if my understanding is correct, there was also some muscle tissue that should have come together in front of the trachea, but was apart. So the surgeon fixed that as well. I didn't think there was any muscle over the trachea, but her tracheostomy was quite low. And I'm not a doctor, so what do I know? Tonight Denise's scar is already looking better than it was this afternoon. Thanks to our neighbor for driving Denise to the surgery, thanks to the school's Parent Teacher Fellowship for arranging effortless meals and beautiful flowers!

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September 2006 Update: Labs improving, Life normalizing, Disneyland family trip

Here's a photo of Denise at Disneyland, her first time with our kids. You can't see it very well, but her hair's coming in nicely (pinned back under Mickey Mouse ears) and is finally longer than my hair! Last year at this time, I doubted that Denise would survive a few more days. Look at where we are now!

One year ago I had the worst birthday of my life. Late at night on September 17 2005, I received a call after a birthday gathering at our house from the hospital saying that Denise had suddenly taken a turn for the worst. That began one of the darkest periods in her hospital stay and precipitated the transfer to USC on September 29 2005. This year I had the best birthday of my life! On September 17, Denise took me to Disneyland for my birthday. This photo is actually from when we went again as a family a few days later (annual passports are awesome!).

I went back to work this month, and Gracie & Jacob are now both at preschool. What a huge blessing to be able to send the kids to the preschool next to the "big" school I work at! Denise, while gradually improving, isn't capable of staying at home alone with a kid (much less both) for the entire time that I'm at work. By having me and the kids out of the way, that lets her focus on her main job: getting better. And I can't adequately describe how wonderful it is to see her assuming her roles with being a wife, mommy, and holding down the fort again.
A typical day for Denise consists of getting up at the same time as me and the kids. We trade off getting kids ready & making breakfast. She kisses us all goodbye, gets herself ready, and goes off to the city's little gym to do her physical therapy on her own. We found out it was way cheaper to join the gym ($100/year) and check in with a physical therapist every month or so than going to a physical therapy appointment several times a week and paying all those office visit fees. She then paces herself, accomplishing a few tasks each day such as shopping for groceries, paying bills, making some calls, doing a load of laundry, water the lawn, etc. She's feeling good about being able to contribute to the family unit again, and I'm stoked to have her help again! It's also empowering for her to be able take care of some of her own medical-related calls and paperwork. She then has lunch, then it's rest time. She crashes, napping for 2-3 hours. After we come home from work/school, we enjoy some family time and Denise frequently prepares dinner without needing any help from me. Then it's KP duty, bath time, more family time, and kids to bed around 8pm. Denise crashes shortly after the kids. She really wanted to volunteer at my school and the preschool all the time. But she's found out that the stamina just isn't there yet. It's improving, though. So in the mean time, she signed up to be a room mom assistant for Gracie's class. She plans to come in to do special things for Jacob's class as her energy returns, too.

Medical mumbo-jumbo, Lab results:
Based on what I heard at last month's Valley Fever Symposium at Stanford, we have requested an MRI and lumbar puncture. From what we learned, both of these should be performed with some regularity so that increased cocci activity can be detected early enough to take appropriate medical action and extend survivability.
Denise had a very important lab draw in September. While we're still awaiting the results of her titers that measure the concentration of cocci in her system, we got some great news. Get a load of this:
Liver enzymes:
SGOT 28 (within normal), down from 42 in August!
SGPT 36 (within normal), down from 60 in August!
Alk Phos 230, down from 235 in August. Normal is 20-125, but that's WAY down from June when it was at 353. So the trend continues to march toward normal.
Kidney function:
Creatinine is 0.8 (normal is 0.5-1.2). Amazing, considering she had kidney failure twice, she was on dialysis a year ago and we were expecting it to be that way for the rest of her life, IF she survived.
CBC:
All her blood lab results are in normal! Her hemoglobin even went up to 14.1 (normal is 11.7-15.5), so she's definitely not anemic.
Since the liver labs were being used an indicator of cocci status, and since the liver labs are improving, I'm optimistic about the results of the titers that we haven't seen yet.

On deck for the coming month is plastic surgery on Denise's trach scar on October 5th. Also we have important appointments with her infectious disease doctor and her neurologist October 10th. Hopefully there will be nothing of concern to post from those events, allowing us to wait until the end of the month for the next post.

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August 2006 Update: milestones, driving, cocci symposium

We've been enjoying our summer as a family this year, as this picture of Denise's first elephant ride shows. August was a wonderful month, filled with milestones...

• Her heart monitor, scale, and some other medical-related equipment was picked up and whisked away.
  
• During her first trip to the dentist in over a year, they found that her teeth looked very nice, and in fact she had less plaque than anyone expected. Particularly nice was that all the vomiting she did when she was in the hospital didn't seem to erode the enamel on her teeth.
• The lab results from blood draws are continuing to head back toward the normal range.
• We moved Denise's caregiver out and are on our own.
• Denise got a referral to see a plastic surgeon and will have her tracheostomy scar worked on in October.
• Denise started practicing her driving shortly after the last post and had her driving evaluation today. She's been given the OK to drive again!
• Throughout August (as well as the second half of July since the last post), we've been having meals with friends, going to weddings, enjoying concerts in the park, and doing lots of things with the kids as a family. We like having Denise with us this summer!
  

My nurse aunt & I went to the Sixth International Symposium on Valley Fever at Stanford University August 22-26. Many thanks to the parents from my school that pitched in to cover sending me! Since they only hold this every ten years, I felt very lucky that the timing was right. We made some valuable connections with doctors & researchers that specialize in cocci. I don't recall any doctors having had a pregnant patient that survived cocci in the brain, as it appears Denise had according to the MRI results from her stay at USC. But one doctor that's seen plenty of cocci with meningitis made himself very accessible to us, and was a willing source of information. Also on hand was the doctor who discovered the first effective drug to fight cocci infection decades ago (I thanked him), and another doctor who is the grand poobah of cocci research at U.C. Davis (I met him, too).
What a learning experience I had! I and a presenter (geologist) were the only people there that weren't medical professionals. I felt stupider than I've felt in years, which is a good thing. Stretching is good. I learned a bunch... some very alarming (tops: cocci cases with meningitis frequently relapse within 6-8 years, 30% fatal), some very encouraging (tops: stories of patients doing well decades after cocci with meningitis, a promising new drug called posiconazole up for FDA approval). Some other interesting tidbits:

• A major source of kitty litter is from cocci-rich soil in western Kern county, CA.
• The military is having increasing problems with cocci infection due to troops being trained in cocci-endemic areas.
• The state prisons closest to where Denise used to live (Pleasant Valley Prison in Coalinga and Avenal State Prison) top the prison cocci list, and experienced record reports only half way through year 2006.
• Even though Fresno's a highly-populated area in the endemic region, it's mostly paved over (not much dust flying around), so relatively few valley fever cases are reported from Fresno.
  
• Cocci was added to the regulated list of bioterrorism agents (yep... with anthrax & ricin)
  
• My favorite: there's a case of a dolphin that contracted cocci. HOW? Did a dolphin take a stroll through Bakersfield?
  

Above all, after hearing what the presenters had to say and learning what I did, it makes it even more miraculous that Denise has survived and is improving. Thanks for working on her, thanks for praying for her. I like having my wife back!

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One year later, Denise's statement

Last blog post... sort of. I think that this will be the "official" last post of the Pulling for Denise blog. I do hope to set up a spammer-resistant email list that you can sign up for, so check back in a few weeks. That way you'll be kept up on major developments every once in a while (yes, I'll post them to the blog anyway). I also plan to post some "before, during & after" pictures of Denise. In the mean time, be sure to add your name to the guest map (link is in the column on the right of this blog).

A few people have told me that reading this blog has been like following a soap opera. One person described the Pulling for Denise blog as "a reality TV soap opera with American Idol participation, except that this really matters." Thanks for keeping up. Thank you for letting my wife's struggle be part of your lives for the last year, even as the trials & tribulations have been present in your own lives. I know that the world doesn't revolve around my family, but many of you have made us feel exactly that special during the last year. I wouldn't wish what we've been through on anyone. But it makes me feel better that so many people have let us know that they've found inspiration, strength, encouragement, and in other ways benefited by keeping up with Denise's status, stories about the kids, and this regular guy's reflections on it all. I'm glad that we've somehow been used to be a blessing to you through all this. I once heard somewhere that God uses cracked pots. Yup.

It's been one year... At 12:58 pm one year ago today, Denise went into the hospital. What we thought would be an easy overnight stay in the hospital for observation turned into the harshest eight and a half months our family's had yet. As you can see from these recent pictures, we're having happier times now that Denise is back with us and getting better. God carried us through by touching our lives through all of you. The way I look at it, whether it was working hard through med school and at the hospitals, prayer warfare from near and far, meal prep, child care, running errands, doing home & auto repairs, contributing to the fund, arranging housekeeping, shuffling schedules for me at work, sending encouraging emails, lending a listening ear, or any one of many other things, God has blessed us through you. I thought it'd be neat to type in the names of everyone that's helped us in some way, listed A-Z, so as to give public thanks (the thank you notes are still coming, even for deeds done almost a year ago). But the list would've been endless, and still I would've accidentally excluded someone. So here's one great big "Thank you!"

Statement from Denise... You've heard just about enough from me. Denise wanted to speak at her reception last month but didn't know when to speak because people were always coming and going. Here is what she wrote, which was then printed out for people to read as they had time. I can't think of a better way to wind up her blog than to finally print her own words...

To everyone that’s been pulling for me,
Jesus commands my destiny. He is my commander, Lord, and chief. The night and morning star, my redeemer, my King, my heart’s desire, my brother, and friend. To Him be all the glory. God holds the keys of life and death in His hands, the keys that saved me from perishing. I did not have the will to live but God willed me. Nothing can separate us from the love of God that is in Christ Jesus our Lord.
Before I contracted this disease I had told God I wanted to be his handmaiden; to be His servant and I said, “God just give me the strength for it.” They that wait upon the Lord He will renew their strength… they will walk and not grow weary. They shall run and not faint.
After my battle with disseminated valley fever and surviving it, more than ever I know that God has a plan and a purpose for my life, as he does for all of us a future and a hope. Scripture: Jeremiah 29:11.
Please I want you to keep on praying and petitioning the Lord with thanksgiving, presenting your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.
Through your prayers I have been given the peace that passes my own understanding, and my health and wellness. Because of your prayer offered in faith you made the sick like me well. Your prayers were powerful and effective. God heard your prayers in His holy dwelling place and the prayers of the upright please him (1 Ch 5:20, 2 Ch 30:27). In Mark 11:24 it says, “Therefore I tell you the truth; whatever you ask for in prayer believe that you have received it, and it will be yours.”
You all have shown me love in so many ways. Your steadfast prayer, monetary help, reporting my health, nursing me back to health in the hospital, the doctors who chose my meds and cared about my lack of sleep or my dietary habits… For all the medical pros who do their jobs so very well and who were there at critical times, thank you from the bottom of my heart & my family thanks you, too. You have all shown me love through the darkest shadows of my life. I only peered into the valley of death; Baby Daniel and Phil’s dad walked completely through it and are in a much better place than here. I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you prayed for me, you clothed me, I was sick and you looked after me. I was in the hospital and you came with music, singing & prayers. You read to me. My sisters and brothers, you did this for me (the least of these), and in doing so, Matthew 25 says you did it for the Lord.
Thank you,
Denise Williams
(from her reception June 16 2006)

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Milestones: PT, Solo with kids, Vision

Four quick milestones:
No more physical therapy needed! Yesterday during a physical therapy evaluation, the PT and Denise both felt confident that she could stop going for therapy. She will continue going to the local gym and go about her regular daily activities. In doing so, she will continue to increase her strength, balance, coordination, flexibility, and endurance.
Solo with the kids! This morning Denise stayed home with both kids by herself while I ran some errands with a friend for a couple hours. She said it went very well.
Vision improving! She noticed that she's able to read much smaller print now than a few months ago. She's not sure, but feels like the black spot in her vision is either shrinking or getting lighter. I'd be interested in taking her to a retinoligist again to see if there's any measurable change.
Goodbye scale & heart monitor! A company called Alere provided Denise with a fancy scale & heart monitor that she had to use every morning & evening. After consulting with one of their nurses, it was determined that Denise has progressed enough that she doesn't need to use them anymore.

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Neuro & ID appts: Great news abounds!

I feel lead to put a concern for one of Denise's friends at the top of today's post. Her 33-year-old friend with stage 2 breast cancer is having surgery this morning at 9:15. Her concerns are that ALL of the cancer will be removed, that it hasn't gone into the underlying muscle, that it is NOT in the lymph nodes (MRI shows that it is), that it hasn't spread to any other parts of her body, and that she can get a particular doctor that she's angling for. She's already had to deal with being disabled for all her life, and that's turned her into someone that presses on in a way that inspired Denise to work so hard through physical therapy. So she'll do her part. Please tug God's robe for her, the medical pros taking care of her, and her family. You participated in a miracle with Denise. Maybe her friend will be then next item on our watch list.

After that, it almost feels inappropriate to post so much great news about Denise. But I know her friend doesn't mind. Hopefully the following will be encouragement that from the bleakest of circumstances, great things can happen. So here we go...

Lab results: Tuesday's labs came back showing the titers (used as an indicator of the cocci infection status) moving one step toward normal (I believe she's now at 1:16, for those that dig this kind of stuff). Liver labs also improved markedly (AST 42, ALT 65, Alk Phos 209) and continue to move toward normal. All electrolytes are within a normal range. Notice how that word "normal" kept popping up in all those sentences? Woo-hoo!
Neurology appointment: Here's what the doctor typed into the progress report on Tuesday: "Alert, speech fluent, face symmetric, gaze conjugate. Motor exam is intact, without focal weakness. Gait is symmetric and intact." He said that he sees no reason why Denise can't start driving again. So we're going to start practicing and take her for a driving evaluation. His plan is to keep her on the current doses of her meds for a few more months and then gradually try to taper down as tolerated.
Infectious Disease appointment: Right after the neuro appointment, we went across the street to see the ID guy. He was pleased with Denise's progress as well. Of note was that she's doing well on voriconazole (Vfend) antifungal, which isn't used as much as fluconazole (Diflucan). He thought that the issues Denise had with the vomiting and increased liver problems earlier this year were related to developing intolerance to the fluconazole. He also thought that when my nurse aunt & I go to the Valley Fever Symposium in August, we should share Denise's experience, as it would add to the body of knowledge and might be helpful to the doctors in treating other people with cocci. So I guess I should go to the uniform supply store & buy a white lab coat so I'll fit in (and look sharp). On the other hand, I'm all about casual, so maybe some scrubs would be a better fit.
Proof in the pudding: Denise is improving, and everyone that interacts with her can tell. She's been doing fine mentally, emotionally, and been making tremendous strides physically. About five or six weeks ago we visited my nurse aunt, uncle, and webmaster cousin for an international food fair in Balboa Park, San Diego. Last week we visited again for our anniversary. My uncle noted that a few weeks ago, Denise had to use a wheelchair to get around for the food fair, and last week she was able to walk down & back up steep hills at the Wild Animal Park and she never used the wheelchair. Yay! We joined our city's little gym so she can do her physical therapy locally (and $100 per year for the gym is way cheaper than the $30 copays for PT). One of the trainers at the gym showed Denise where all the PT equipment is and gave her permission to use the stuff any time she wants. She's working hard and increasing in balance, flexibility, endurance, strength, and coordination. At home, she's been doing all her own personal care for weeks, can prep meals, care for kids (she can pick up Jacob, and he's having a growth spurt), and even practicing some low-key dance moves from a video. We used to take swing dancing together and hopefully that'll be on the radar screen again soon. With swing dancing, the basic guy part is easy; that gal does all the flashy stuff to make the couple look good. So for regular guys that don't like dancing (and you don't, right, chaps?), I'd recommend swing dancing as a good way to satisfy your gal's need to go dancing while saving yourself from looking like a doofus. But I digress...
Room search: Anyway, Denise is doing so well that we feel we've accomplished our goal of getting her self-sufficient enough to not need live-in care anymore. So in anticipation of Denise's caregiver moving out, contact us if you have a lead on a spare room for a neat, tidy, well-organized, considerate female. As a bonus, she's got a British accent that adds a bit of sophistication to the household, too.

Potty training update... Jacob is chugging right along. A few weeks ago he'd sit on his potty, pull the catch basin out, pees through to the floor, and then put the catch basin back in. Now he keeps the catch basin in and does his thing. But then a few times he's pulled it out and waved it around, saying "Look! Pee-pee! Yay!" We've been mopping the bathroom floor & walls fairly frequently lately. I think I liked the diaper better. If you've got a worse potty training story, I could use it about now so I can keep things in perspective.

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Reception recap, Activities, Blog end & book?

Here's a picture of Denise & a school parent (and nurse) from the reception on June 17th. Just look at that little smile & raised eyebrows on Denise's face! These two ladies are talking about going shopping together sometime this summer! During the two hour window of time, I don't even know how many people came & went. Some people drove an hour or two so they could meet Denise and talk to her for a few minutes. My only regret from the day is that I didn't get pictures of everyone that came to visit Denise. Her only regret is that it didn't go longer so she could have time to spend with everyone and properly make everyone else feel as special as they made her feel. She wanted to get up & speak, but was very nervous. That was OK, since the microphone wasn't working until the very end, and with people coming & going constantly, there never would have been a good time to address her adoring public. She did write something up, which we photocopied for the guests. I need to retrieve that file from a flash drive that's in my desk at work. Doh! I'll get it and post her words next time.

These are some folks that were strangers until the day of the reception. They'd only known Denise & I from the blog. After talking with them, they kind of made me feel like a hero for doing the blogging and presenting Denise's story. I feel like they're heroes for praying for her even though they had no idea who she was. Oh, and they also provided one of the cakes at the reception, so that weighs in pretty well in their favor. Seriously, though, they and people like you pulled for Denise and supported our family in every way imaginable. The most eloquent words I could ever use would still be way to feeble to express my gratitude.

Speaking of heroes in my mind, the tall guy in this shot is another one. He's a school parent that's also a surgeon at USC. Other than thinking he pointed out that there was still hope for Denise's survival during some of the darkest days, he's a humble guy and doesn't think he did much. But I think he's representative of the medical professionals at Arcadia Methodist, USC University, Huntington Memorial, and Country Villa SNF that worked their tails off, applied their skills, cared for my wife in a personal way, and did everything they humanly could to fight for Denise's life. Thank you to all the doctors, surgeons, nurses & helpers of all certifications, RTs, PTs, OTs, and everyone else.

This is a neat picture of Denise with a bunch of friends from her time at Westmont College. She picked some great friends. How do I know? They've become my friends more than ever and supported me & the kids every ounce as much as they've supported Denise during her hospital stay, that's how I know. And yes, guys, some of these ladies are available!

Activities Galore! This is a great paragraph to be able to write... Since school's been out, not only have we had Denise's reception, but we had a bunch of 4th grade boys at our house for a movie marathon (school fundraiser) and we went to an end of school pot luck for Gracie's preK class. Denise visited the CCU at Arcadia Methodist Hospital (I'm awaiting the picture to be emailed to me) and visited Country Villa skilled nursing facility. We had a test run of life on our own, as Denise's live-in caregiver was gone for almost a week doing house sitting for some friends. She's been sort of a security blanket for me, but somehow we managed to do pretty well during her absence. That stint on our own is another milestone in Denise's recovery. We're stoked! Escrow on my mom's house closed (if you need an agent, she'd very highly recommend the guy from Furstenberg Realty that she used) and she moved into a retirement community very close to us. Denise started swimming again for the first time in almost a year at the city pool and again at the pool at my mom's retirement home. Denise's sister & her husband had their second child (her mom just missed the event) and Denise's dad went to do some hurricane relief. I took Jacob to Disneyland, our whole family went to Kidspace Children's Museum, Gracie & I camped out in the backyard, we've gone to the park, and we went to a Dixieland jazz ice cream social where my mom lives. July 5th is our anniversary (talk about the ultimate wedding reminder... fireworks & barbecue, then I'd better buy some flowers the following day or I'm in the dog house). Actually, we alternate planning little getaways each year, and this year it's my year to plan. I guess that for most people a 9th anniversary isn't usually a big deal compared to a 10th. But after what we've been through, it might as well be a 50th or 75th, as far as I'm concerned. I feel like the last year has aged me a few decades. Denise also started and almost immediately stopped taking a med called Geodon. It seemed to have the effect of boosting the behaviors that it was supposed to suppress. It made her feel odd. Why is this great? It's because other behavior changes were only noticed by others, but she noticed this one herself. Anyway, as you can see, between my family & friends, life has been crammed with activity and my blogging has become more infrequent.

Now this is a difficult paragraph to write, as it involves another person to pull for. We found out during the last week that one of Denise's best friends has stage 2 breast cancer. She's 33 years old, same as Denise. I'd give you a name to associate with the situation, but she asked that I not include a name at this time. Perhaps she'll set up a blog at some point and I'll certainly put a link to it if that happens. She was a huge inspiration to Denise, particularly during the hard work of learning to walk again. Now her friend says she's drawing inspiration from what she's seen happen with Denise's journey during the last year.

Blog end & book... I appreciate that so many of you, in spite of your own trials in your own lives, have been keeping up with Denise's struggle for so long. Thank you for caring, or being addicted, whichever. This soap opera's been going on for almost a year, and our lives look like they're now heading back to normal. I was thinking of ending regular blog postings on July 18, the one year mark of Denise's hospital admission. I brought up to my cousin (the map/fund/email list guy) the idea of starting the email list again (this time, more spammer-resistant). That way you can sign up to receive updates, and won't have to keep checking back on the blog, only to find nothing new. But if something noteworthy happens, good or bad, you can still get word of it through email (and yes, I'll post it on the blog anyway). If we can get that email list going again, I'll put a link to it in a post.
And another suggestion that seems to come up from time to time is publishing this blog in a book form. Even though this blog will probably stay online and anyone that cares to read it can have access to it for free for year & years, I guess that there's always the possibility that the Google/Blogger people might take it down. So maybe a hard copy version might show up on the radar some day. Anyway, part of the usefulness of this blog has been the interactive nature of it. Your ability to post comments has educated me, encouraged us, increased the quality of Denise's life, and quite possibly played a part in saving Denise's life. So if we ever do publish a book, there are definitely some comments that I'd like to include. If you can think of a comment you posted that you wouldn't want in a book, please email us to let us know. Denise might want to kill me for writing some of the things I've written, though. So I guess it's kind of a gamble, huh?

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No paracentisis, GI appointment, Neuro med tweaks

The reception for Denise is tomorrow! The address listed in the previous post is for the school's front office. The gym is on the opposite side of the campus, so be sure to drive around the block to park.
I was putting together a display board with some photos and just found this one that I forgot to post from about a month and a half ago. I remember that when Denise was in the hospital and I took pictures of her, I had to search for one that made her look good (most were never used). Notta problem anymore, now that she's looking healthier as the weeks go by.

It's very late & I'm pooped out, so here's a quick summation of what's happened this week.
The fluid draw from her ab that was supposed to happen Monday never happened. The ultrasound showed no pockets of fluid. Denise was disappointed, as she was really looking forward to losing the tummy. She's slightly above her target weight and her tummy is the only place that's collecting extra weight. It's not how she'd like to look, and people are always asking her if she's pregnant when she's out & about. You'd think that'd be a really touchy subject, but she's taken the questions in stride. Anyway, fast-forward to today's appointment with the GI doctor, and not finding fluid to remove is a positive thing. The GI doctor said that the lack of fluid is very good, as it indicates (in the context of increasingly favorable liver lab results... I'll try to post numbers soon for you hep people out there) that the liver is getting better. He noted that her liver is smaller as well. Still enlarged, but smaller. His best guess is that her tummy is redistributed fat tissue that will go away over time as her activity increases. Interesting stuff explains all that, but I'll save it for another time.
The neurologist appointment resulted in the addition of one more drug (Geodon) in very small doses. Upon running the concerns mentioned in the previous post by the neurologist, he felt that this drug would help. The pamphlet containing the list of cautions & possible side effects is a minor Russian novel. We'll see what happens when we throw that one into her neuro drug regimen of Trileptal, Lexapro, and Risperdal (all in very low doses).
And some other stuff...
School's out for the summer, so now I have more dates open on which to schedule my nervous breakdown. Yay! I've been looking forward to it for months and can't wait for it to happen! With the end of school also came a stellar 8th grade graduation ceremony. Denise & I were presented with a very generous check for Denise's fund, the money collected solely from junior high fundraisers. Every year the kids use a chunk of funds for their special activities and also donate some to charity. This year, we were the charity. I was so floored that I felt like saying something, but couldn't. Choke. It was all a blur. The student that gave us the check was saying something, to me, but I was in a fog and couldn't grasp it all. It's probably what your dog feels like when you talk to it. So for anyone that was there that night that's reading this, thank you. To the students, I think back to my level of consideration for others, smarts, talent, and every category of maturity when I was in junior high, and compare it to what I see year after year in you, the young men & women from my school, and you always blow me out of the water. To the parents & everyone I work with, I see where the kids get it from. I've relied on you all more and gotten to know more of you on a deeper level because of what's happened during the past year. What a mega-family to be a part of!

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Reception, Paracentesis, PCP, Neuro, Gastro Appts

Celebration of Life Reception for Denise Williams
That's the name my friends at school came up with, and I can't think of any more appropriate thing to call it. We sure hope you can come greet Denise over some punch & cookies on Saturday June 17, 2-4pm in the gym at Pasadena Christian School, 1515 N. Los Robles Ave. Pasadena CA 91104. Whether you know Denise well, have never met her before; whether you fit into the friend, family, neighbor, or medical pro category, we'd love to see you and say "thanks" in person for the part you played in getting her through to where she is now. If you haven't seen her for a few months, you will be amazed! Enough people have asked about where to send a card if they're too far away to make it to the reception, so here's an address:
Denise Williams 2328 Oakhaven Drive, Duarte CA 91010

Physical progress
Denise is back to her normal weight, and her strength, balance & endurance are markedly better as each week goes by. She sometimes has a "tired" day, but I think she deserves some slack, right? She's regularly been able to bathe herself, clean her own wounds, prep meals, and many other things. Reading is spotty, but she was able to address thank you notes from Jacob's birthday party. It's wonderful to see her able to increasingly accomplish things on her own, relying on her caregiver less and less. She's not at the point that she should be alone with kids yet and it's difficult for her to do many cleaning tasks (and so her caregiver is our saving grace over & over). But the great thing is that even though the kids will both be home for summer (no pre-K, no day care), I'll be done with teaching in a couple days and home for the summer to help. Then in September, both kids will be in preschool. I can't believe how much progress Denise has made since coming home about two months ago. I can't imagine the progress that she might make over the two & a half months of summer. I remember being told back in September that I need to be her biggest cheerleader, pointing out every accomplishment and getting her to buy into the notion that she could survive. I'm still playing the cheerleader, and am so thankful that now it's in the much more positive context of getting back to normal, not just fighting to pull through.

Appointments on deck
It's a big week for appointments. She goes this afternoon for a paracentesis to draw fluid off of her abdomen (first time in months). We think it's been ever so gradually diminishing. It should be interesting to see what happens after this fluid draw. Then later this afternoon she visits her PCP (primary care physician) for a status check.
Tuesday she has an appointment with the neurologist. He remarked during the last visit about how much Denise had improved since the prior visit and reduced one of her meds by 50%, giving us instructions to give the other 50% if we see manic (interpreted to be pre-seizure) behavior. I didn't see anything as blatant as what I'd seen before. But the caregiver and I have noticed some slight behavior changes that seem to correlate with the change in meds. Part of me wonders how much of this is just Denise getting stronger, wanting to take on the world after being down for so long, less doped up on meds, and getting back to normal. Another part of me is wondering if some of the behaviors are things that meds could help to even out (not for my convenience, but for her functionality & happiness). And if that's the case, what is a reasonable balance between being oneself, free of meds, and being medicated but not having all of one's own personality? I'm not one to want to throw medication at every physical or emotional difficulty that comes along. But I do wonder (and I'm sure Denise wonders about me). :O)
Friday she has an appointment with the GI doctor. I was going to post the info from her last appointment, but it was (and is) still filled with speculation until the latest liver labs come back. The GI doctor and ID doctor probably need to huddle first, then I can post some specifics. The info from the GI doctor was just relating to what can be done in the event that the cocci goes on the move again and is manifested through liver trouble. I've received a few more emails asking why Denise isn't going to an actual hepatologist for liver things. Apparently the gastro and liver problems and functions could be interrelated. According to liver lab results, her liver function bounces around, but is within an acceptable range. If things get worse, then a liver guy will come into the picture. Until then, the GI doctor seems to be well-versed to deal with Denise's level of liver function.

Thanks, Seminar, Politics, Potty Training
Thanks for the tremendous response to the last post. We were given a mattress by someone from my parents' insurance company (give the good folks at Tom Romano State Farm in Alhambra CA a chance if you're in the market). People came out of the woodwork to offer help for Denise's reception (there's always room for more cookies, if you want to bring any). And here's a shy but heartfelt thank you for the swell in contributions to Denise's fund. Also, thanks for all the help for Jacob's birthday party! We were even blessed to meet some brand new friends that have been following along for months. Thanks also for all the help with getting my mom's house ready to sell. Escrow should close later this month and she just moved into her retirement home last week. She'll get used to having someone else doing the cooking & cleaning sooner or later.
I'm planning on going to the 6th Annual Symposium on Valley Fever that's put on by U.C. San Diego, being held at Stanford University near the end of August. It's pitched toward medically-inclined folks. So I'll be way out of my league. Then again, its good to be a small fish in a big pond... it leaves room to grow. Hopefully some of the brilliance of the presenters will rub off on me.
I received a pretty neat email a while ago from a total stranger that had been following Denise's story. He said he feels like this blog has been better than a soap opera, was encouraged by my love for Denise (notta problem... she's easy to love), thought I did a great job of communicating, even being funny, under the stress, and really feels like he knows us. He wrote jokingly, "I just can't tell: Are you a Republican or a Democrat?" I had to chuckle. I wrote back that I shouldn't answer that one because I ran roughly a 50-50 chance of giving the wrong answer. Then I might all of a sudden become a jerk in his mind and possibly even lose his support for Denise (I say that with my tongue firmly planted in my cheek). Anyway, the reason why I thought his email was so neat was that it made me think of how many people from different backgrounds (I'm talking not only political, but faith, socio-economic, educational level, racial, age, mental & physical ability... on and on) have pulled for Denise together. It also encourages me that people perceive that Denise's situation is the obvious focus of this blog. It ain't about me. I'm just her publicist.
That said, let me tell you that Jacob has started potty training. School's end and Jacob's end are probably the biggest reasons for the long gap in blog posts. He's running around half the time with no pants on. Hopefully he'll outgrow that by the time he gets into a career. Anyway, the potty we have has a collection basin that's removable via a pull-out handle on the front. Whoever designed this thing didn't take rascals into consideration. A couple weeks ago, when I first sat Jacob on it, he pulled the basin out, THEN promptly relived himself. Messy floor. He did that trick again and again, gleefully, I might add. I was just about ready to get the duct tape out and tape the handle to the seat. Then he stopped for a couple weeks. Well, last night he started the pull-out-the-basin trick again. At church yesterday the sermon was talking about rest. Denise & I leaned over to each other: "Easy for him to preach about; he doesn't have preschoolers at still at home anymore!" Just think: Denise has been in the hospital for most of a year, and shortly after coming home, gets to help with potty training. Yup, she's assuming her role as mommy again. Things are getting back to normal.

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Drivers, Mattress, Reception, Fund

The details of Denise's GI appointment from last Friday are still being processed into layman's terms for me to understand and pass on to you. In the mean time, here's one big call for help. I'm usually the "go-to" guy for things, so this is more than a little humbling. Here goes.

Drivers needed:
We are looking for people that would be available during the daytime to drive Denise from Duarte to Pasadena for appointments. Lunch will typically be in it for you, and of course, we'd kick in for gas money, take care of parking, provide a clear map, and send along relevant medical info for the doctor (so you won't have to memorize this blog). Denise is not able to drive and her caregiver is working on a license, but that'll be a while in coming. At this point we're down to 2 appointments per week, so if 8 people could throw their names into the hat, that'd be about once a month for everyone. In an ideal world, we could piggyback the appointments. But specialists are usually in their offices one day per week, and too many appointments in a day exhausts Denise. My aunt the nurse has been driving up from Escondido so I don't have to miss a day's work (& pay) to take Denise to her appointments. She's been generous with her time & talent (and gasoline) far beyond our wildest expectations, but she has a life, work & family, too. Just hoping to spread out the workload a bit.

Mattress needed:
We are looking for a used, yet clean, full or double (futon-sized) mattress for the kids. Currently they're on a futon mattress that's pretty worn down and hard. It's a temporary thing until Denise doesn't need a live-in caregiver anymore and the kids have their own rooms again (with twin mattresses to take up less real estate). So we were trying to borrow first and not buy. If you have one available, please contact us. I can pick up.

Reception help:
The reception for Denise is Saturday June 17, 2pm - 4pm at Pasadena Christian School. I jumped into planning a reception for her, not thinking that I've already got my hands full (and things are squishing out from betwixt my fingers, like Pla-Doh). As a result, I envision it simple for the miracle gal: cake, cookies, punch, balloons, people that have pulled for Denise. If you're a cookie-baking sort, balloon-inflating pro, or have a mean punch recipe, and feel like helping out, let me know.

Williams Family Fund:
The following is an email from my aunt, the nurse. She wanted me to put this in the blog. I think she's holding for ransom the layman's details of Denise's GI appointment from last Friday until I post this...

From the nurse aunt:

On 4/23 this was one of the comments on the blog in response to the details of where Phil's Dad requested donations be made.
anonymous said...
Phil,
You all are in my prayers and while I know those are worthy organizations (and my own father benefited from the Salvation Army ministry as a poor child growing up in Pasadena), how would one go about donating to another of your father's favorite causes, namely the Phil Williams Family Fund?
Please post the info again. Thank you. A sister in Christ.

I'm Phil's nurse aunt. Phil won't ask for help but I will for him. Just because Denise is home doesn't mean the costs of an illness as severe as what Denise had are over. The bills are now coming in and will continue. As will the copays for PT and visits with a long list of specialists and the need for continued caregiver services at home and childcare. Dick told Phil one of the reasons he held on and went through more chemo was to see Denise get home. He did that and I know he would want to see Phil and Denise get some well needed assistance with these costs. Just like the loaves and fishes, I've seen God take little amounts and do great things. I am asking that each of us give a little in Phil's Dad's name, Dick Williams, to the Williams Family fund to assist with the ongoing costs of this illness. I know Dick would have liked that.
Yours in Christ,
Nurse Aunt (Jackie)
Here's the link: Williams Family Fund
Make check payable to Diane Evans, indicate "Williams Fund" in the memo. Mail to:
Attn: Diane Evans
Pasadena Christian School
1515 N. Los Robles Ave.
Pasadena CA 91104
Or use Paypal to send donations to pullingfordenise@yahoo.com

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124 pounds, Month-old med data, Memorial, Cadillac

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.

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121 pounds, Dinner date, Open house...

I've been getting quite a few emails asking if Denise is OK as the days go on. I can't believe it's been almost two weeks since I last posted. I've been swamped between dealing with things related to my dad's death, helping mom clear out/clean up/sell the house, and some school events. By the way, mega-thanks to the people that showed up for a workday at my mom's house that was planned last-minute. A tremendous amount was accomplished! My uncle's in town now, helping my mom with the rest of the items on the to-do list.

I hope to post some fairly significant developments with Denise (I'm a couple weeks overdue). Mostly positive stuff, fortunately, but a little lengthy and technical for posting tonight. I'm wiped out. She does weigh 121 pounds, and we think that the ab swelling is going down as the weight is going on. She's walking around the house, uses the wheelchair for longer distances. We finally went on our first date since she came home from the hospital. We went to a couple places so she could pick out a suit for me (the third suit I've ever owned... I try to limit myself to one per decade) and then we had a wonderful dinner at McGrath's Fish House, where she ordered lobster for the first time ever!

Among the aforementioned school events is my school's open house tomorrow night. Denise will visit Gracie's preschool classroom and then make it over to the K-8 side of the school to hang out with me in my classroom and schmooze a while. If you're in the area (and particularly if you can't make it to her reception on June 17), maybe you could swing by my school and visit her in my classroom (the computer lab). And if you do, please pardon the lack of flashy decor in my room... I've been a little too busy with other things to decorate. Click here for a map to my school.

Some friends & family have requested the following links, so here they are:

• Map to my dad's memorial service
• Online obituary & guest book from Riverside Press Enterprise
• Entry at U.S. Navy Memorial web site log book (his photo's pending)
  

Save some pull for my mom over the next couple days. It hit me the other day that not only has she lost her spouse, had to downsize, sell her home (goes on the market on Monday), move into a retirement home, and do tons of paperwork... But gardening & culinary things are her hobbies, and she will be going to a place without a garden to tend & a kitchen to cook in. On top of that, Mother's day is sandwiched between the memorial service on Saturday and the interment ceremony at Riverside National Cemetery on Monday. I guess there's never a good time for any of this stuff, but the sting has got to be particularly nasty right before & after Mother's Day.

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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.

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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.

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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

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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.

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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.

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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.

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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.

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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).

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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.

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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.

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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.

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Is Lasik Eye Surgery For You? Or Are You Too Sqeemish!

For those of you that don't know Lasik stands for Laser-Assisted in Situ Keratomileusis. In Lasik the surgeon cuts a small flap in the cornea and uses a laser to reshape the inner area of the cornea. Problems with the cornea can be related to many vision troubles such as; Hyperopia or farsightedness and Myopia or nearsightedness). Also problems like Astigmatism can also be caused. The good news is that eye surgery and lasik in particular resolve many of these eye defects.

The sheer number of different of surgical procedures for correcting vison problems can leave you uncertain of the best one for you. However, whatever may be your procedure of choice, attaining excellent results is largely dependent on the expertise of your eye surgeon. lasik is by far the most preferred corrective eye surgery, and hence it is imperative that you choose an eye surgeon with a great deal of experience.

If you are thinking of going in for lasik eye surgery then this is what you can expect. Before getting lasik you will be examined by a qualified eye doctor or ophthalmologist. During this examination standard eye tests and computer images of the cornea will be taken to build up a picture of the eye and ascertain what corrections need should made. In addition your overall health is also considered when deciding if you will be a good lasik patient. Any conditions, such as dry eye syndrome, may affect your ability to get this type of eye surgery, but in these cases other treatment may be available.

You will be able to go home on the same day as you eye surgery and should have recovered within just a few days. Minor irritations may take up to a month to disappear. The vast majority of people who undertake this surgery will be able to see much more clearly straight after surgery and this improves still further over the next few days.

Some people may experience some side effects like light sensitivity or night time vision problems. In even more rare cases other difficulties like infections can also occur, but most often, if you follow your doctors orders these things can be avoided or cured quickly with eye drops of medication. Other side effects are more long term. These can occur for 6 months or longer. These are: dry eyes, blurred vision, difficulty seeing at night, light sensitivity, glares, and vision fluctuations. If you cannot handle any of this, then this eye surgery is not for you. Attaining excellent results is largely dependent on the expertise of your eye surgeon. Lasik is by far the most preferred corrective eye surgery for many, and so it is imperative that you choose an eye surgeon with a great deal of experience and who is using the best medical equipment available.

This type eye surgery has been big news over resent years as the changes to peoples vision and quality of life can be astounding. People who could not see without glasses are getting almost 20./20 vision and word of mouth about these 'miracles' spreads fast. With many people flocking to have the procedure done it has become one of the most popular eye surgeries. However, before committing to the surgery you should look into what lasik is and what it can do for vision in general and your sight in particular.

Before committing yourself ask to speak to people who have had the operation with the organisation you are thinking of using yourself. Ask about the good and bad points of both the operation and the company itself.

As lasik is a fairly new medical procedure the long term risks are not known and it is not possible currently to cure the need for reading glasses as this is problem is more connected with the weakening of the eye muscles over time rather then the corner. As a potential candidate for lasik you must discuss all your concerns and expectations with your surgeon before the procedure is carried out to ensure you completely understand the process and outcome possibilities for you as an individual.

Finally, many people can't even think about anyone touching their eyes, never mind someone pointing a laser into them. If you are reading this article and are feeling a bit squeamish then perhaps lasik is not for you!

Richard is a prolific and diverse writer. You will find out more about lasik eye surgery at Lasik Resources.

Article Source: http://EzineArticles.com/?expert=Richard_Cussons

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Eye Care is More Than a Visit to The Doctor

Proper eye care is just as important as taking care of the rest of your body. Eye care is more than visiting the eye doctor for regular examinations. Rather, good eye care involves caring for the entire body and staying away from bad habits that may actually have an affect on the eyes. Let's take a look at what's involved in good eye care.

Diseases of the eye are more common that you would think. Further, as people age they become more susceptible to eye diseases. That's why regular examinations by the eye doctor are so critical to the idea of good eye care. An eye doctor can run special tests to see if there is any indication or the appearance of eye diseases and disorders. Diseases and disorders include, but are in no way limited to cataracts, conjunctivitis, diabetic retinopathy, dry eyes, glaucoma, orbital tumors, and blindness, congenital diseases of the eye and more.

Yet, it is also important that a person takes care of their body and remains as healthy as possible. Why? Well, beyond the benefits one derives from being healthy some health conditions actually affect the eyes. For instance, vitamin deficiencies can affect the sight. A lack of vitamin A can even cause night blindness. In fact, it is a known fact that well over ninety percent of all cases pertaining to the onset of blindness can be attributed to other diseases. Diabetes is another disease that plays a significant role in the occurrence of blindness. Therefore, it becomes increasingly important for people to maintain their overall health in the best way possible and to manage existing conditions if at all feasible.

Bad habits are something that should also be avoided if one wants to properly care for one's eyes and maintain good eye health. Smoking can cause significant damage to the eye and can eventually result in blindness. For instance, smoking can be the cause of what is referred to as Macular degeneration which creates a blind spot in the eye or eyes.

Other problems that occur with the eyes are caused by accidental injury. Say for example, you are working in a garage welding and item and you don't wear goggles during the process. Suddenly you find that a spark flies up and burns your eye. Or, if you are working with hazardous chemicals and chemicals get in your eyes - had you been wearing goggles you may have been able to avoid injury altogether. Thus, safety and safety practices are imperative to maintaining good eye health.

As you can see, taking care of your eyes involves more than a yearly visit to the eye doctor. Instead, you need to take care of your overall health, you need to avoid bad habits and you need to practice safety measures to ensure good eye health. In the end, you will be rewarded with the continued gift of sight, well into your golden years!

Michael Russell Your Independent guide to Eye Care

Article Source: http://EzineArticles.com/?expert=Michael_Russell

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