Denise's magazine article

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

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

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

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.

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

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!