Pulling for Denise

Denise's magazine article

2009-04-19T12:07:00.000-07:00

Our church is doing a series about encounters with God. One of the pastors asked Denise to write an article reflecting on her experience for inclusion in the March/April/May 2009 issue of Seasons, our church's newsmagazine. The article's title seemed to focus more on me as the blogger, and the article mixed portions of what Denise wrote with some of what I typed on the blog. Here is Denise's entire article that she wrote herself:

Since becoming a mom I have faced some of the most emotionally trying times of my life. Sometimes there have been more toils and snares than I thought imaginable but yet I have had more tremendous joy from being a mom. My experience has been a lesson of letting go and giving my pride, my expectations, and my emotions up to God. Surrendering all these things day by day is a process, and I don't have it perfected. I have been refined many times by fire but I still need refining. I am in pursuit of God's perfect plan for me. We can only speculate on why God allows some things to happen to us. We as believers know that He works all things together for the good of those who love Him (Rom. 8:28). He brings light into our darkness, faith to our disbelief, and restores joy to our broken hearts.
I grew up the oldest of three girls and a perfectionist by nature. If I wasn't good at something the first few times I rarely tried it again. As a young women I was told that I would be a terrific mom. I had helped my mom and dad raise my youngest sister who is twelve years younger and who still calls me “Mom” on occasion. I was energetic, patient, and loved kids.
In 1997, I was married to my college sweetheart. He was great with kids, a comedian and a grade school computer teacher. We had our first child, Gracie, in 2001. I had fears about being a mom. The learning curve is so steep for first time moms. Due to circumstances beyond my control, at two weeks old, Gracie ended up in the NICU at Children's Hospital of Los Angeles. We were there for two weeks, which seemed like an eternity. I was deeply depressed. I blamed myself for what happened to Gracie. I told God at that point that I would take my life if she didn't make it. Gratefully, we both survived this incident but I still could not let go of my guilt. I was also mourning the fact that my mothering experience was not perfect like I had imagined it would be. It wasn't until the day of Gracie's first birthday that I was able to give her and my experience over to God. I felt that I was finally able to receive healing.
In 2004 I had my son Jacob. He was named by Gracie, who was two and a half at the time. My early experience with him restored my confidence in my abilities as a mom. It helped that Gracie loved her brother and was a such a big helper.
In July of 2005 I was six months pregnant with our third child, Daniel. He looked as if he was going to be another big healthy baby. One night I woke up with itchy hands and feet. The next morning I had a rash on my forearms. I started having high fevers as the day progressed. On July 18th I was admitted to Arcadia Methodist Hospital. This was the beginning of an 8 1/2 month hospital stay, and I almost died. I was diagnosed with disseminated coccidioidomycosis (Valley Fever) with meningitis, the version of the disease most likely to end in death. It's contracted from inhaling a fungal spore that lies in the soil found in California's central valley, where I had been visiting my parents. I was put into a medically induced coma for three months. During that time I delivered Daniel. He was stillborn. When I awoke from the coma I realized I had lost our son, I could not use my limbs, my muscles had atrophied, I had a feeding tube, and I could not speak because I had a tracheotomy and was on a ventilator. And it was at that point that I asked God to restore my health or take me home to Him. He decided to restore my health. On March 30th 2006 I went home to my family.
Years before this happened I had asked God for a testimony. I wanted to do more for the Kingdom because nothing I did on my own seemed to be enough, I had asked God to use me as His handmaid (Luke 1:38), trusting that He would give me the strength for the task.
My husband wrote a blog while I was hospitalized. It touched many people locally and abroad. While I was incapacitated God was using me for His Kingdom. The apostle Paul said that through his weakness, the Lord's strength is make perfect (2 Cor. 12:7-10). I am grateful to my loving Father that He chose to heal me and use my life to show His glory. And I am also grateful to the body of Christ that prayed for me. If you would like to see the full story and a slide show of my recovery please visit pullingfordenise.blogspot.com.

Merry Christmas 2008, Doing well, Facebook

2008-12-25T12:16:00.000-08:00

Merry Christmas! Denise is looking healthy, the kids are cute, and Denise says I look nice in a suit (I avoid suits as much as possible). Her progress since our 2005 Christmas picture is amazing. She even joined a gym recently to try to work on her balance, strength and energy with regular workout classes.

Since our last post, our medical concerns have been few. Denise has hearing aides enjoys being able to hear again (she opted for tiny hearing aides that fit completely in her ear). The most recent test for cocci came back undetectable again, and we are very happy for that. She's also been experiencing fewer GI issues since she started a simple regimen of over-the-counter items from the drug store. Denise had a couple liver labs over the last few months that came back unfavorably at first. Retesting after eliminating supplements from the health food store showed normal results.

Over the summer Denise discovered Facebook. You can look her up as Denise Hall Williams. She's not on frequently, but she would be encouraged to hear from any of you that kept up with her struggle.

3 year cocci anniversary, hearing aids

2008-07-18T21:28:00.000-07:00

Today, July 18, is the 3 year anniversary of the start of Denise's struggle with cocci. So I thought that this would be a great time to finally post an update to share all the good news.

In February Denise did a photo shoot for Edwards Lifesciences Corp. They made a cardiac device that helped her tremendously. One of the CCU nurses at Arcadia Methodist saw the device in action, then went to work for Edwards, and called us to see if Edwards could use Denise's story in their annual stockholder report. The story behind this photo is that the kids were getting squirmy after a while, and the photo crew couldn't get a picture with everyone posed properly at the same time. So at one point I told the kids to cut loose and tackle mommy. They did, and the photographer started clicking pictures. One of those semi-candid shots is the one they used. They put Denise's picture on the front cover and the online version even has a bit about her that didn't make it into the printed report (click here). A note about the doctor on the page with Denise in the online report: Dr. Rogove, D.O., F.C.C.M., F.A.C.P. I think that's a string of Latin abbreviations for "Was not one of Denise's doctors, but looks darn spiffy in a suit and is an adroit spokesman for Edwards' products." It's a bummer that photos of Denise's actual doctors aren't there. A bigger bummer is that Dr. Rogove's in Laguna Beach while we're in, well, Duarte. 'Nuff said.

April: My nurse aunt & I attended the Cocci Study Group in San Diego CA, and Denise came along this time, since the conference wasn't held in a cocci-endemic region. Denise got to meet & thank two of the biggest names in cocci research for their work: Dr. Hans Einstein (light suit) and Dr. Demosthenes Pappagianis (dark suit). They've been studying cocci since the 1950s. I need to do some fact checking, but I believe that Dr. Einstein is credited with figuring out an effective way to combat cocci (using amphotericin) in the 1950s and Dr. Pappagianis is credited with publishing his first cocci paper around the same time. So we got to chat with the big-hitters of Valley Fever research, and all I had on me with which to capture the moment was my lousy camera phone. Sigh.

The latest titers came back showing undetectable levels of the cocci antibody! The voriconazole is suppressing the cocci nicely. Since that's the case, there's no need for those pesky routine spinal taps. Yay!
Her neurologist ramped down the anti-seizure medicine and discontinued it several months ago, and Denise has been doing fine.
She recently had an echocardiogram (to check her heart's strength) and an MRI (to check for any advancement of lesions in the brain). We haven't gone to the appointments to hear the results yet, but the cardiac tech told Denise that it was hard to believe that her heart was bad at one point. That was encouraging.
Her GI tract is coming back to normal, and ab swelling is going down. Her GI specialist told her that after what she'd been through, it could take her body a couple of years to feel and look "back to normal." Since things are getting better, he took her off of one of the GI-related meds. She's discovered that a little coffee has some of the same benefits.
Her vision improvement seems to have stopped some time ago. But she's adapted to mild vision impairment so well that she hardly notices it anymore (until she goes for retinalogist visits). Other than no longer feeling comfortable about driving at night, she's doing nicely. It's wonderful that she's progressed from what she described as a large black field in one eye, to now having some blurriness that she's adapted to.
Her hearing improvement also has stopped. The results of her ear exams show no physical problem, so the doctor assumes that the damage the cocci did to the hearing portion of the brain is probably permanent, and recommended getting hearing aids. She's said that in one ear, everything sounds badly muffled, and she's noticed that she can't hear people as well as she was able to before getting sick. There have been many instances wherein she's felt embarassed by either misunderstanding what people have said, or not hearing them at all and coming across as rude because she doesn't respond at all. The problem is multiplied in noisy settings with multiple conversations going on at once. She's teetering back & forth between wanting something completely in the ear (so that nobody notices she's already got hearing problems) and wanting a behind-the-ear hearing aid that's easy for people to notice (so if she doesn't respond properly to other people, they'll get the clue that it's just a hearing problem, not a rudeness problem or a mental problem).

So there you have it. Lots of good news, and no crisis. Thanks for checking in!

Merry Christmas! Oct, Nov, Dec 2007 Updates

2007-12-25T20:56:00.000-08:00

Merry Christmas! As you can see from our family photo, Denise continues to heal nicely. Compare this photo to these December 2005 photos (you'll have to scroll way down), or watch the slide show that's in the previous post below. With progress like that, who needs to make up a wish list? Jacob's face shines with pride, as he's only three, but can ride a two-wheeler playground bike (and lets everybody know it). Gracie has a big smile even though she's all done with horseback riding lessons until we can save up for a few more next spring or summer. And the photographer caught me in half-smile mode (we're migrating to Windows Vista at work). Before the nice medical news, here's a funny Christmas-related story. Gracie's kindergarten class talked about "making healthy choices" during Red Ribbon (drug awareness) week at school. So she thought that since Santa is overweight, we shouldn't leave him cookies on Christmas eve. Instead, we should leave "ants on a log" (celery with peanut butter & raisins). Then a few weeks later she told me that maybe "ants on a log" wasn't a good idea because Santa might be allergic to peanuts & peanut butter. So she concocted the idea of "ants on a snowy log" that would substitute cream cheese for the peanut butter. Nasty. But at least she didn't think of using tofu.

Some milestones from the past three months:

Denise & I spoke at one of my school's Parent Teacher Fellowship meeting and presented her slide show on the big screen.
We also shared our experience and the slide show at a friend's church (literally... it was Alhambra Friends Church... that's a code-word for Quaker). Denise still hasn't plowed through all of this blog. But when we're done with that task, we'll share at our church, too.
During a checkup of Denise's trach scar, the plastic surgeon noted that not only did the appearance of the scar improve, but Denise's abdominal swelling had gone down. Then in checking that out, he found that she's got a hernia. After what she's been through, we're not too alarmed.
The infectious disease doctor told us that the blood & liver labs were all within normal ranges, and titers for cocci antibodies came in at less than 1:2 (prior it was between 1:2 and 1:4), but once again the lab folks ignored the notes on the paperwork and the labs did not go to U.C. Davis, where the tests are more sensitive. So the doctor is going to go to bat for us next time in January to make sure the labs get sent to the right place for testing. If that titer also comes back favorable, he's considering changing from voriconazole (Vfend) back to fluconazole (Diflucan). When Denise was having some setbacks on March 11, 2006, there were questions about whether her problems were caused by withdrawal from Reglan or by not tolerating Diflucan. They switched her to Vfend and we never did find out what caused the problems. But now that she's doing so well, she might go back to Diflucan and the ID doctor will keep a VERY close eye on her cocci labs. Going back to Diflucan would save us a significant amount of money each month, and Denise wouldn't be so sensitive to sunlight (Vfend puts her at increased risk of getting a specific type of skin cancer).
The retinologist hasn't gotten back to us yet, but didn't find anything new to report during the appointment. Denise copes with her vision problems well, though these short winter nights and increased nighttime driving have made her aware that her night vision isn't what it used to be. So driving at night isn't her favorite thing to do right now.
The neurologist thought Denise was doing well and plans to take her off of her low dose of anti-seizure med Trileptal after the holidays. She continues to do well on the "almost negligable" dose of Abilify (to combat the manic phases that crept up as a result of the cocci going to the brain). It is possible that, if she continues without any problems, that she could discontinue that med as well. She's happy that it doesn't cause the weight gain, like her last med did. In fact, as mentioned above, she's been losing weight at a slow, stable, healthy rate over these past months. So both in mood and physical appearance, she's returning to her pre-illness self. Before her next appointment in June 2008, she should have another spinal tap (to check for presence of cocci antibodies in CSF) & brain scan (to check status of brain lesions, particularly calcification of the basal ganglia). Last, he recommended a hearing screening to determine what is causing the instances when Denise feels that she's misunderstood what people have said or people can't get her attention, which can be embarrassing & stressful to her. Is it hearing, or some processing or state of consciousness problem that's crept up since her illness?
Testing started in September on the drug Nikkomycin Z against Valley Fever. Other anti-cocci drugs only suppress the fungus. Nikkomycin Z has been shown to kill the fungus in mice, curing them of of the disease. Testing will start on humans out in the Tucson, AZ area. Here's an article: http://uanews.org/node/15940

Until next time, thanks for the the comments & emails, and thanks for caring!

August & September 2007: Video, Cocci vaccine, Neuro appt.

2007-09-30T22:51:00.000-07:00

We've put together a photo slide show to document Denise's hospital stay & recovery. Just a warning, a couple of the pictures are hard to look at. I tried to only post uplifting pictures of Denise during her struggle. But Denise wanted you to see just how bad things were for her: in a medically-induced coma, holding baby Daniel's lifeless body, hoses, wires, vents, machines, feeding tubes, catheters, fevers, trach, hair loss, weight loss, scars, exhaustion & everything else. That way it would underscore just how blessed we are that she not only survived, but is getting better with time.

Denise visited the neurologist in late August. He was pleased to see that she's continued without seizures, lapses in consciousness, manic episodes, tremors, or anything else. I'd hoped that he would lower her anti seizure or other meds, but he's keeping her at the same level. Denise will have labs done up and visit the infectious disease doctor in late October. The last labs showed her titers for cocci going another notch toward normal, and her liver labs came back normal. So I am hopeful that we'll hear more good news.

A couple weeks ago I flew to Phoenix (cocci central) & back in one day to hear a talk by Dr. Garry T. Cole of the University of Texas, San Antonio. He's working on a vaccine for Valley Fever. I felt kind of bad for him because the talk was not very well-attended. But that worked in my favor, as he took a great deal of time to talk to me about his work (and nice guy that he is, he used little words as much as he could so that I'd understand). Anyway, I thought he'd be talking about Nikkomycin Z, the anti fungal that might be the magic bullet in killing cocci, not just suppressing it. But his work is completely different. Leave it to a guy like me to mix up a cure project with a vaccine project. In a nutshell, it seems that a vaccine is workable. They've nailed down which phase of cocci development from which to start (killed spherule, not arthroconidia), the specific component of the spherule from which to derive the vaccine (actually, a protein on the spherule wall, if I understood correctly), and they've got some very encouraging results from testing on mice. All they need is money. He brought up the tremendous rate of infection among military personnel that train in cocci-endemic regions. He also brought up the costs associated with their treatment, downtime, disability payments, and in the worst cases, benefit payments to their survivors. It's possible that the Army and/or Marines might back the cocci vaccine out of pocketbook concerns if nothing else.
Here's a short (though technical) intro to Dr. Cole's work: http://bio.utsa.edu/faculty/cole.html

And for non-medical stuff, Denise continues to bite off a little more as time goes by. She's been able to stay awake longer during the days as her endurance comes back. Gracie started kindergarten. Jacob goes to preschool and stays home with Denise one day a week. She'd like to increase it to two days a week as she's able to catch up on the time she missed with him while she was in the hospital (she went in when he was 15 months old, came out when he was about 24 months old... about a third of his life later). She's also been getting more involved at the school as she's able, started connecting with other moms through a M.O.P.S. (Mothers of Preschoolers) at church, and doing a little bit with Door of Hope, a Pasadena ministry to help homeless families. And for my birthday, we went to Disneyland and ate at Goofy's Kitchen. Yes, I am the biggest kid in my family.

June & July 2007: Titer down to 1:2-4, Liver normal

2007-07-31T18:45:00.000-07:00

Denise's appointment with the infectious disease doctor was loaded with news that put smiles on our faces. Her liver labs all came back within normal... even the Alk Phos! Considering that she had complete liver failure & was yellow in the hospital two years ago, and had what is suspected to be cocci-caused granulomas in the liver last year, this is amazing! Better yet, the cocci titers came back from U.C. Davis at 1:2-4, lower than the 1:8-10 that we heard about six months ago. So things are progressing nicely. Her next test will be in October, as will the next visit to the I.D. doctor. Denise is trying the South Beach diet and feels like it's helping get her back to her pre-illness weight and reduced the ab swelling (recent scans show no ascites, indicating no presence of infection). So we're relieved to have some grasp of how to cope with the onset of the GI-related problems since she came down with Valley Fever.

This summer has been so much better than two summers ago (when Denise was in a coma) and last summer (when she was doing so much rehab). I got off work for the summer in June and life's been good! My school honored me by dedicating this year's yearbook to me, and they also had wonderful things to say about Denise continuing to heal & thrive as a testimony to God's mercy (not to mention the hard work of the medical teams). We gave Jacob his summer haircut (mohawk). We went to court for the first time ever (and hopefully the last). It was just small claims court, and it was surprisingly low stress... nothing like Judge Judy. We went to Disneyland and were treated to a night at the Disneyland Hotel (the kids loved the Peter Pan-inspired swimming pool there). We went to visit Denise's sister & brother-in-law in Montana for a few weeks (this picture of Denise was taken in Philipsburg MT). We crammed in a lot of first-time activities for the kids: a visit to Yellowstone, fishing, horseback riding, driving a boat, going to a dirt track car race, and Gracie even learned how to shoot a rifle and took horseback riding lessons. I tried wakeboarding (I'm exactly as unsuccessful at that as I am at water skiing). And we celebrated our 10th anniversary in July. A couple years ago, I didn't think that we'd make it to this point, but I sure am grateful that we're here!

June & July 2007 update

2007-07-18T23:55:00.001-07:00

On this date two years ago, July 18 2005, Denise went into the hospital and our lives changed.
There's so much good stuff to write about from June & this month... but we're in summer vacation mode, so I'm going to be a little bit lazy and post the happenings from June & July at the end of July.

May 2007: Ab distension, Weaning off seizure meds

2007-05-31T23:24:00.000-07:00

The tall guy with Denise in this picture is a parent from my school that works at USC University Hospital. He initiated Denise's move there during one of the times that we thought we'd lose her (the post for September 27, 2005 has those details). Our school had a fundraiser dinner, and he was there. He hadn't seen Denise for almost a year and was glad to see how much she has improved. He's one of our medical pro heroes, along with the other people pictured in the January 2007 post. Personally, I think that Topps should maket trading cards of all these people.

We paid a visit to the GI doctor this month. A couple of the most frustrating things for Denise has been the change in body shape and the slowing of the GI tract (she was described as being a "GI cripple" at one point during her ordeal). Several times, people have "congratulated" Denise on being pregnant, or asked when she's due. So over & over, Denise has had to explain that she's not pregnant, we can't have any more kids, she's just shaped this way due to secondary issues from the cocci infection, etc. etc. etc. She knows that people certainly mean well, but having lost baby Daniel during her ordeal in the hospital, painful issues get brought up over & over. So it's not just the physical that's frustrating; it's the emotional as well. Anyway, we already found out from the neurologist that the Risperdal that she was on causes increased appetite (this was handy when Denise weighed 87 pounds. Denise prefers the Abilify that replaced the Risperdal, by the way... she seems to have more energy. We also learned that the Trileptal slows metabolism (anti-seizure med). So we hope that the combo of switching to Abilify and weaning off of Trileptal (more on that below) will ease the abdominal distension.

The lab results from tests ordered by the GI doctor showed no thyroid problem (he suspected there was a thyroid problem, and we're requesting a visit with an endocrinologist next). He's suspecting that the stress of what she went through, and the duration of it all, caused excess cortisone in her system. My limited understanding is that this would slow everything down (GI tract, metabolism, everything). The good news is that things can apparently return back to normal over time. In the mean time, Denise has tried two meds to help stimulate her GI tract into working regularly, and they seem to work on & off.

She's been seizure-free for well over a year now, and the neurologist told us to cut Denise's already low Trileptal dose to half of what she was on and try to get her off of it. She went down one week ago tonight, and it takes a while to get it out of her system. So I'm supposed to keep an eye on her to see if she spaces out, stares, etc. No problems so far. Of course, this presents a slight inconvenience, as someone needs to be with her for a while while driving for a couple weeks. But I'm off for the summer soon, so the timing's great.

Next month she gets a fluorescein angioplasty of the eyes to determine in great detail what the status of the scarring is in her eyes. This will be done by the doctor that's familiar with cocci that I wrote about in the last post. We also have an appointment with the infectious disease doctor, the psychoneurologist, and a checkup of the trach scar.

I went to a funeral for a great uncle this month. I remember him most from when I was much younger, when we'd see extended family at gatherings every couple years. He was a neat guy, and funny (during the eulogy it was stated that if he were with us and saw anyone sad & somber, he'd have said, "Knock it off!"). So I was looking at the casket and started choking up. Then I transferred what was happening (his funeral) to what what could've happened to Denise. I was thinking of how close Denise was to being in that casket. Then I really started choking up. Fortunately, there was no booming voice telling me "Knock it off!" Anyway, I got home even more excited than usual to see my wife. I'm really looking forward to this summer when school gets out. After spending summer 2005 at the hospital, and spending summer 2006 doing the tail end of rehab, we're really looking forward to a "normal" summer now.

At church we happened to plop down next to this wonderful family. We didn't recognize them, but they recognized Denise. They were keeping on top of her situation from the very beginning, before this blog was even started. How? They've got connections to Arcadia Methodist Hospital where the journey began. It even turns out that a sister (in-law?) was one of the pharmacists that provided Denise's meds to the ICU. Small world!

April 2007: Retinology appointment, Switch meds

2007-04-23T22:51:00.000-07:00

Denise turned 34 this month, and to celebrate we went to the Napa Rose restaurant at Disneyland (sorry about the grainy camera phone picture). The food was stellar, as was our company (a really neat brother & sister; the brother had a long hospital stay after a nasty accident, and the family set up a blog). But the best part was getting to spend a special birthday evening with my 34-year-old wife, whom we thought we were going to lose at age 32. I'm one blessed man!

Here are the developments from this month...
We had an appointment with a retinologist that's new to the office we've been going to, but he was quite familiar with cocci and the effects that it can have on vision. Bonus: Other doctors that have patients with cocci-related vision damage seek his opinion! So we're confident that we have the right guy. He found that the optic nerve is no longer swollen (indicating that there is no infection), however there is still retinal scarring. In spite of that, Denise's vision has improved! Where there used to be an area of darkness (the cocci caused her to go partially blind in one eye), now there's just an area of slight blurring. We have to go back again for a fluorescein angioplasty so he can really take a look at what's going on with her eyes.
We paid a visit to a doctor that a friend from the kids' preschool recommended. He switched out the Risperdal in favor of Abilify (it's for a different primary condition, but he thought it would benefit Denise). She likes it so far and has felt more energetic (Risperdal causes drowsiness), no signs of manic behavior, no signs of seizure. The new med doesn't have the effects of increased appetite & slowing the metabolism. She's all excited about starting to return to her pre-illness weight. Just tonight she showed me how her pants are starting to fit loose and sag. I'm tempted to ask the doctor for a prescription for myself. :O) The doctor that had Denise try the Abilify also thought that she could eventually go off of that and the anti-seizure med as well, since they're both in such low doses. So we'll see what happens.
On a sad note, my dad died a year ago on the 18th of April. Easter was a little difficult for me this time, more than Christmas or Thanksgiving for some reason. My guess is that it's because in my mind, his passing revolved around Easter last year. I drove him to the hospital going into Easter weekend and we lost him two days after Easter. Time heals.
Ending on a lighter note, Denise's blog crossed the 130,000 hits mark in April! I'm glad that the hits have slowed down... things are normalizing and there's just not as much reason for anyone to check this blog frequently anymore. I'm also glad that the hits still trickle in... thanks for caring enough to check up once in a while.

March 2007 Update: Cocci Study

2007-03-31T21:59:00.000-07:00

We participated in a 3 mile ABI (acquired brain injury) awareness walk this month, and here's a picture of Denise cooling down with the kids. Months ago I was put into contact with a man whose wife was hit by a car in September and is ever so slowly recovering in the hospital. Meanwhile, he's trying to maintain some normalcy... grappling with balancing caring for her, keeping up with work, and raising a daughter & son that desperately want mom back home. Sound familiar?

Last month the neuro doctor said to try lowering the already very low dose of Risperdal. That didn’t work well, as we had some issues and Denise had a very bad day that required me to leave work. She went back to the previous level and things evened out. So we'll look into trying something different in hopes of finding the right meds and the right timing.
My nurse aunt & I went to Phoenix AZ for the "Cocci Study Group." It was incredibly informative! We had access to the best of the best in cocci research and treatment. Several doctors took the time to hear our concerns and offer advice and encouragement. After having gone to the cocci symposium at Stanford in August, I felt much better-prepared going into this meeting. We found out that there is one other case of a pregnant woman with cocci in the brain. In her case, she did have a baby (born at 8 months gestation) and has been out of the hospital for about 5 months. I don't think her situation was as grave as Denise's. Still, it's remarkable that she survived with cocci in the brain. We also heard of a case where a man contracted Valley Fever without living in or visiting a cocci-endemic region. He purchased a vehicle from a cocci-endemic region and had it delivered to his home. The dust in the vehicle (and in the AC ducts) contained cocci, and that made him ill. I could make this quite a long post if I were to relate everything that I learned (and I only understood a small fraction of what they were saying). One very helpful doctor commended me on jumping in to learn about cocci. He said it's not one of the simpler organisms, nor a simple disease to understand. So that made me feel less stupid.
The high point of the weekend for me was that in the restroom, the Grand Poobah of cocci research chose the urinal next to mine in which to pee. Wow!

February 2007 Update: Brain damage healing

2007-02-27T21:36:00.000-08:00

A big milestone for Denise is that we did some swing dancing at a friend’s house. Denise exhibited incredible balance and coordination. Dancing for her is like riding a bike for most people… once it’s learned, it’s never forgotten.
I, on the other hand, was as lame as ever, but still had a great time dancing with her!

Super news in the brain damage department! The most recent MRI showed only “one punctate lesion” (that’s one point of damage that lit up). The MRI before this one showed multiple lesions. So that means that things are healing! I must admit that part of me wants another MRI, just to be sure. It seems too good to be true!
The February cocci titer came back “negative” for cocci, but it wasn’t sent to the usual lab at U.C. Davis. My school changed insurance companies beginning in February, and getting the cocci tests to be handled by the preferred lab is one of the small issues to work out. The I.D. doctor said that the lab that handled the most recent titer isn’t as sophisticated. We think that we have everything straightened out now, though. Cerebral spinal fluid is still negative for cocci.
Liver: alk phos is at 158. That’s down from where it was last time, and another notch toward normal.
Denise feels like her vision is improving (she’s partially blind in one eye from the cocci). We’re going to get her to a retinologist to see if the eye lesions have resolved and have a look at the optic nerve (it was swollen about a year ago at the last exam).
She’s been having ab swelling and we’ve been advised to pay a visit to the gastrointerologist again. The change in body shape has been very frustrating for Denise. She’s been doing aerobics and eating healthy, but it’s been hard to get back to her normal pre-illness weight. The neuro meds she’s on can cause weight gain by changing metabolism and increasing appetite. This was helpful when she couldn’t hold food down and weighed in at 83 pounds, but she says it’s getting a little old now.
The neurologist wants us to try lowering the Risperdal again. Denise’s on such a low dose, she almost might as well not be on it at all. But the last few times we've gone lower, we felt the need to go back to the current level again. Denise would rather be off of this med, as it also can make her pretty tired. Once the Risperdal is gone, the only other med to ween off of is the Trileptal (and Denise has been seizure-free for almost a year!).

January 2007 Update: No cocci in CSF, liver normal

2007-01-30T20:08:00.000-08:00

We're having a very Happy New Year so far and hope to have many more!
During my school’s Christmas break, we paid visits to Methodist Hospital in Arcadia and to the office of Denise’s doctor from USC. These two guys called the shots that pulled Denise back from death over & over again. They seemed about as happy as I am to see Denise alive & well. And below are pics that include just some of the people that were on the teams that worked so hard for Denise (some of these pics are from before our Christmas vacation visit, and this web site doesn't have the capacity to let me post all the pictures I wanted to upload). We hope to make it by USC University Hospital and Huntington Hospital to thank the crews there as well.

Visits to the specialists have been fewer and farther between as time goes on. This month, there were no appointments. We’re glad for that.
Last month’s visits to the specialists were loaded with good news! The cocci titer came in at 1:16. No evidence of cocci was detectable in the cerebral spinal fluid. Liver enzymes were normal (amazing, considering how bad her liver function was). Denise had an MRI to see if the damage to her brain has healed over the last year or so. We’ll get results during next month’s appointments. Lexapro was discontinued (antidepressant, neither Denise nor I thought she needed it, but neurologist thought it’d be good to have her on a low dose, just in case).

December 2006 Update: Merry Christmas!

2006-12-25T16:08:00.000-08:00

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.

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

2006-11-30T23:54:00.000-08:00

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.

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

2006-10-10T21:33:00.000-07:00

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.

Throat surgery went well today

2006-10-05T20:44:00.000-07:00

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!

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

2006-09-30T20:16:00.000-07:00

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.

August 2006 Update: milestones, driving, cocci symposium

2006-08-31T23:05:00.000-07:00

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!

One year later, Denise's statement

2006-07-18T21:12:00.000-07:00

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)

Milestones: PT, Solo with kids, Vision

2006-07-15T15:20:00.000-07:00

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.

Neuro & ID appts: Great news abounds!

2006-07-13T06:47:00.000-07:00

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.

Reception recap, Activities, Blog end & book?

2006-07-01T23:44:00.000-07:00

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?

No paracentisis, GI appointment, Neuro med tweaks

2006-06-16T23:55:00.000-07:00

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!

Reception, Paracentesis, PCP, Neuro, Gastro Appts

2006-06-12T09:12:00.000-07:00

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.

Drivers, Mattress, Reception, Fund

2006-05-24T10:42:00.000-07:00

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