One year later, Denise's statement

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

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

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

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

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

Milestones: PT, Solo with kids, Vision

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

Neuro & ID appts: Great news abounds!

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

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

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

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

Reception recap, Activities, Blog end & book?

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

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

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

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

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

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

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