Darren LeBlanc

1. I’m an idiot – I posted the little blue banner on the right hand side of the page and accidentally made it link back here rather than to the new Online Community. It’s fixed now. That’s what I get for writing html code at 4am.
2. One of the comments from yesterday referenced an old Twila Paris song: How Beautiful. Well, this is very funny because Misty and I sang that in her church when we were like 16 and 17.  Thanks Sheree for the unintended flashback.
3. I made salsa yesterday and I’m loving it. I’ve tried a few times in the past, but never get it just right. I’ll post the recipe soon (as soon as I take a picture)
4. I bought a seagull acoustic guitar, but sent it back because it came cracked (way to go musiciansfriend .com). In the mean time, I fell in love with a larrivee and found an amazing deal on ebay. Pictures/review to come as soon as it gets here!
5. My work blackberry has 900 unread messages…I need to go back to work soon. (read: God needs to bring Misty back to walking and talking asap)

Today was much less cool than yesterday. Misty didn’t say much of anything and was discouraged a good bit. After dinner she started complaining of a headache as well and wanted some medicine. She’s sleeping now and there is a frown on her face.  I was kinda down with her at times.

Olivia, on the other hand, is marvelous.  Each night when I say “bath” she starts repeating ”bath”, “bath” and runs up the stairs to the tub. After she’s in, I give her the washcloth and she says “washa face” (wash your face) – she announces each part of my face as she rubs the washcloth over it: “eye, nose, mouth, nose, hair, ear, chin, teeth, nose”. I’m always grateful for the face washing.  Then we sat downstairs with mommy and I rubbed her little back as she drank some milk ( pronounced “mulk”). She finished and got up, put the cup in the sink and came back in saying “put sink, mama seepin, bed” – which means “Daddy, I put the cup in the sink, aren’t you proud of me? Mommy is sleeping, I’m tired too…lets go to bed.” So, afer kissing misty, I took Livi upstairs, said our prayer for mommy and laid her in bed. She’s goes right to sleep usually. She’s such a good kid.

Note: If you don’t care about MacGyver, skip to the bottom – today was a good day!

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A few days back I posted about how I used duct tape to annihilate an army of ants. Well, I got a few emails (as well as some comments on the website) regarding other uses that many of you have found. I hate to play can-you-top-this, but today I’m going to indulge myself.

I have three stories for you. All true. Here they are:

1) I used to play out a ton with my band. We got a gig doing a half time show at a semi-pro football game. I showed up without a critical piece of equipment: my guitar strap. It wasn’t 5 minutes and I have a brand new strap made of duct tape that not only lasted me the show, but stayed in my case as a backup for years.

2) The least impressive of my stories…but critical to establishing my daily dependence on the product. I had a pair of sandals where the sole had completely ripped off. Instead of purchasing a new $10 pair from walmart (the 24hr store of choice in college) I taped them. With 2 or 3 re-applications to the front toe area, those babies lasted me many more months.

3) Lastly, perhaps my proudest moment… It was summer after freshman year in college and I was going to head down to North Carolina with Misty’s family (it’s a 12hr drive from my home – that’s an important detail). It was the eve of our lovely trip and my car starts overheating. I gave it a once-over and found that the coolant was low. No biggie…fill ‘er up and I’ll take off in the morning. Well, morning came and she was low again. I found a good size tear in one of the coolant hoses. With no time to repair, I pulled out my trusty roll and began some ad hoc automotive surgery. Needless to say, 12 hours later we were safely in North Carolina. (yes…I got a new hose before coming back..haha)

Misty Update:
Today began like it was going to be tough. Misty was discouraged; I had a hard time figuring out a few things she wanted to say; Olivia was a bit cranky. Time changed that though. Afternoon was nice; Dinner was fabulous (thanks to Mrs. Brown!). We had another date while Olivia went to church with my mom. We picked up Strollo’s Italian ice and drove down the beach. There were 2 different places that we pulled over and rolled down the windows to enjoy some live music while feeling the ocean breeze on our faces ( I love NJ). Anyway, that was nice, but the nicest part was that Misty added a few words to her vocabulary today. She said:

• I don’t know
• Sure
• I love you
• Yea
• I like them

and at least 2 other things that I can’t remember. A big improvement over her one word vocab of the last week or so after that seizure. I’m going to focus on praying for her speech tomorrow. One step at a time.

I hope you have all had as lovely a day as I have.

Most days are not all that challenging. Sometimes, it feels like it should be harder…other times, it’s unbearably difficult. The average day though, certainly falls well into the range of bearable. Many days are in fact, quite pleasant.

Misty cannot speak at all. She says the word “no”. That is her vocabulary right now. We interpret whether it’s a yes or a no by head motions usually. When she is trying to communicate something she makes a series of sounds, trying to talk. We begin the guessing game. We have tried picture books, but she doesn’t seem to like those. Note that this deteriorated level of speech is a new since the last seizure. Before that, she had started to say a few things (and actually was getting some of the words right while singing in church).

Misty has her mind back. Her funny little things (like eating bacon with a fork) are becoming few and far between and she is very aware of her surroundings.  She asks what time it is, and can read the digital display from my phone (she is always grabbing my phone to check the time)…she wants to know what day it is, and often relates things to the calendar (like church, garbage pickup, etc). She is totally with it. This causes tension though because her body can’t keep up with where her mind is. At times, she wants to tell us things that are very difficult to guess. This is tough.

Emotionally, she is doing well. Many days there are spells of discouragement, but these are always temporary. We usually pray and read some sections of the bible that have been encouraging to her in the past.  90% of the time I ask her, she is happy and content.

Physically, things are ok. She is rarely in pain and is usually pretty comfortable. However, she can’t walk at all. Standing is better than it was a couple weeks ago, but I have to be there to support her and it only lasts for a few seconds. So better than before….but no better. Her right arm has no movement. She can’t curl her fingers or move that arm at all really. (some days there is a small bit of return, but nothing permanent or significant).  She is not really weak like she was before. She is fragile…I mean, I often hurt her a bit lugging her around from place to place, but she is not weak like she was. She is sitting up a bit better and does much better eating now (she eats without much mess anymore). Speaking of eating…she has a great appetite and eats very well.

Really, most days are very nice. We get out of the house at least every other day (probably more actually – taking drives or going to her parent’s house). We spend many evenings out in our backyard swinging by the fire…and every morning’s breakfast is on the deck in the recliner lounge chair.

That’s where she is at.   Before you go, please check out our new Online Community. I’m only using it for prayer requests right now, but it will be updated in the near future.  And please sign our mailing list (on the right of this page). It’s encouraging to Misty to see so many names she knows (and doesn’t know) on there.

Ok, I’m off. My girls have fallen asleep next to each other on the couch and I have to go get everybody into bed.

I felt it was timely to do a little history recap so people don’t have to read a million posts to understand the history. The orange links are all further reading from previous posts. Here it goes:

May 2000 – Misty began experiencing small seizures (just an aura and eventually slight loss of feeling in right arm) while we were at college. Local doctors misdiagnosed as various types of cysts for a few weeks. 

August 2000 – We switched doctors and she was scheduled for surgery immediately. Her first brain surgery was a complete resection of a Stage II (Low Grade) Astrocytoma. After a follow-up radiation, she was in remission for a full 6 years.

October 2006 – Misty had another seizure, so she went back on seizure medicine. We knew something was up, but didn’t do an MRI because she was pregnant (many MRIs are safe for the baby, but since we knew we weren’t going to consider treatment during pregnancy, we waited)

March 2007  – A surgery to get a biopsy of the new tumor growth revealed it had progressed to a stage III. Misty began a chemotheraputic drug called Temodar (now the first line response for traditional brain tumor treatment)

April 2007 - A drug introduced after the biopsy caused Misty’s body to react. The doctors had no idea at first what was going on…it felt like an episode of the medical show “House”. It turned out to be serious (40% mortality rate) but fixable. A week in the hospital with a 105 degree fever was rough on her.

November 2007 – The MRI shows that the Temodar has stopped working. A increase in the dosage was attempted (December) with no response.

January 2008 – Brain surgery #3 goes fairly well and suggests the cancer is still stage III. Unfortunately, after close inspection, the doctor wanted to do a 4th surgery to remove a bit more of the tumor just two days later. Two weeks later, we got the pathology report indicating that she had progressed to Stage IV.

February 2008 – Misty began a new chemoregimen: CPT11 and Avastin (administered IV, every two weeks). Her veins can’t handle the chemo so she has to have a small surgery to implant a port in her chest.

March 2008 – CPT11 and Avastin combo isn’t working. A new dosage is attempted, but that doesn’t work either. Her life is visibly deteriorating. We begin to pray more and call a prayer meeting at a local church…only to have Misty break into a big seizure in the middle of prayer and need to be hospitalized.

April 2008 – Misty starts a new drug called Tarceva. Her condition is continuing to deteriorate and her speech is significantly impaired now.

May 2008 – Misty and I were discouraged. Many people who love us were as well. We set wednesday as a day of fasting and prayer for Misty. She lost all of her speech abilities. I posted about faith from suffering. I began to really believe that God would heal Misty…not just that he could. It was (and is) a process with lots of questions, but a good process. May 30, 2008 – Misty finally gets a MRI with no change.

June 2008 – Misty drops to just 93 lbs but is showing some progress for a couple weeks. An isolated seizure doesn’t worry us too much.

July 2008 – Misty has a terrible seizure and we end up in the hospital for few days. The report from the MRI doesn’t look good so the doctor gives us an option of stopping chemo, or moving to an older drug with worse side effects and less likelihood of working. The decision: no more chemo. The doctor sent us home from the hospital on July 4th, giving Misty just 1 to 2 weeks to live. Since that day, she has progressed upward (excepting a big seizure on the 14th, a very small seizure on the 17th and another on larger one on the 27th).

That’s the history up to today. Tomorrow’s entry will entail a better glimpse of where we are really at in the present.

PS…Today was good. We got out for a ride, ate well, and enjoyed the day.

In 6th grade we had to get timed running the mile. My grammar school didn’t have a track so we were instructed to run around this soccer field 6 times, then a final leg across a short stretch of the school campus. Seems simple enough. Well, my gym teacher had this idea that it would be best to have half the group running clockwise around the field and the other half running  counter-clockwise around the same field. We ended up passing people head on. 

It was the 5th lap and the fatigue was hitting hard, but I was making great time. Just as I could taste the finish line, my hopes of a good finish were shattered. One of my classmates running toward me came in pretty close and before I knew it he landed a swift uppercut punch to the center of my stomach. I dropped like a bag of stones. I laid on my back for nearly a minute before I could breathe enough to get up. To this day, I have no idea why he punched me.

Today I got the wind knocked out of me again, but the process was 100% different and the result was infinitely more painful…

I woke just before 6am to the sound of my wife trying to speak out for help. She was having a seizure. She was yelling unintelligle words to wake me. We spent the night at my in-laws’ place (our usual saturday night agenda) so I knocked on their door to let them know to pray.  I could hear Olivia in the next room with a scared little voice crying for “mommy”. Unfortunately, I had to give Misty 2 shots and it still didn’t stop.

Last time, when I drove her to the ER myself, I kinda got a gentle slap on the wrist that I should use an ambulance in case she stops breathing (a common problem with seizures) – so I picked up my blackberry and dialed 911. While we were on the phone the seizure did finally stop…but they insisted on coming to the house anyway. So it’s 6am and we are trying to convince the paramedics and the police officer that they can leave and let Misty sleep (this was not as simple as you may think).

It was really  discouraging. This week has been so great…we could taste the finish line. Then just as we were 10 full days of no seizures – Misty has a pretty bad one. I’m so sick of this. I really thought we were done with the seizures. I’m so disappointed that I was wrong. Nevertheless, the day  didn’t turn out to be terrible. The rest of the day was fairly pleasant and relaxing.

Regardless of the challenges, we’re learning to be content:

“for I have learned to be content whatever the circumstances.”
- The Apostle Paul, Philippians 4:11

My heart is heavy tonight. Not for Misty, but for two precious children that today I learned are fighting their own battles against cancer: Brody and Isabella. Brody has Stage IV Neuroblastoma and is scheduled for radiation to begin on monday. Isabella is scheduled for a major brain surgery the same day to remove her tumor.

In light of this, I decided to expand this website a bit. I have been playing with the design of a discussion board, where anyone can not only reply to my posts, but make posts themselves (with pictures, links, etc)…and tonight it is launched. I’m only opening two forums right now. One for prayer requests that I (or my soon-to-be-appointed forum moderators) post and another for anyone to post prayer requests. I will open other forums for different things in the near future. You can view the posts and reply without registering, but if you will be a regular, I suggest you create a username and password. I’ll post directions on how to do that soon (I’m in a little rush to get this done tonight so everyone can pray for monday – so this is sort of like a beta launch).

Please go there now and read the stories of Brody and Isabella.  Feel free to leave comments and encouragement for the families…they did not ask me to do this, but I will make sure they see it.

Please go to the new ONLINE COMMUNITY  now!

P.S. Misty has a decent day. The fact that she has improved so much over the last few weeks is a clear miracle, so we are still encouraged in the midst of this very slow upward movement. I plan to post a detailed summary of her progress probably tomorrow. Thank you all so much for praying and sending notes, emails, cards… We are overwhelmed by the outpouring of love for our family.

I’m exhausted and need to get some sleep. Sorry for not much of a post tonight. Each day I try to spend the waking hours with Misty…then I work after she goes to bed. It usually gets me to bed between 3am and 5am…and up between 8am and 9:30am.

I just finished some updates on http://calvarylighthouse.org (my part time job), and its 1am…so I’m going to sleep.

Today was good though. Olivia’s best friend (violet) came over (our friends scott and ann, and their kids violet and lyla). It was nice. Nothing new. It’s discouraging at times that there is nothing new…but Misty is patient.

If you didn’t add your email addy to the mailing list, please do. Other than that, I’m done. Hope you all had a great day today :)

Exactly three months ago tonight, I wrote a post about how life was beginning to be surreal:

“To be completely honest…life is beginning to be a little surreal. Not in a good way like if you won the ridiculous lottery that NY is always advertising….but in that life almost seems fake. Tonight puts one more mark on the list of times I have had to tell my wife that her chemotherapy has become ineffective. One more time that we have to consider that there is no doctor in the world that would sign up to a very optimistic prognosis.”

Then I continued with some words about the imminent demise of my hopes and dreams. 

“At the core of my heart, there is a desire to do great things…to bring positive influence to this earth. I’ve had dreams of being a government leader, or an influential community pastor…or even just a mentor to a couple great kids. All my dreams however, have been put on the proverbial “back burner”. They have been pulled from the realm of something I am reaching for and have been relinquished to a tattered folder of “things to do before I die” – and I don’t visit that folder much anymore. I guess the story is that life changes. Just about everything I cared about 3 years ago…has become vanity.”

I was so discouraged that day. The only 2 chemotherapy treatments that are really any good for brain cancer had both failed. I had a little hope in God, but it was more like “I know God can heal Misty if he wants, but it doesn’t look like he is going to do that”. My prayers turned to “God, please heal Misty…but if you don’t, just please help me know how to take care of Olivia by myself”. I trusted God and I knew things would work out for me and my daughter, but more often than not, I didn’t really believe Misty was going to be healed. Misty was even more discouraged. She was convinced she would die and she obsessed about that everyday…every minute really. Many days were very dark.

Well, three months later, the tides have turned. Things are a bit surreal once again, but in a different way. Today, we have the occasional doubt, but overall, everyday is filled with an unusual (but welcome) confidence that God is healing Misty. Everyday is a struggle in one way or another, but our minds are generally at rest. But what this juxtaposition to three months ago really highlights for me is how God had plans to use us even in the midst of the hell that Misty has been going through. I wrote about how my hopes and dreams were dead…but in reality, they were just being birthed. I ask Misty most everyday if she is trusting in God. Without fail, she tells me that she is and that she has confidence in the truth that God is healing her. Even when we got potentially crippling news about the cancer’s progression a few weeks back, she still believed in God and his healing. I get hundreds of emails each week from many of you who are encouraged by Misty’s faith. So in reality, it’s just that my role has changed. I’m no longer the pastor or the leader…now I’m the husband to a hero in the faith. A woman who displays strength in the midst of enormous trial. I glean strength from her and display it for the world to see. So I’m no longer discouraged about being consumed at home and not being able to help people in the same manner I have grown so accustomed to. Now though, I’m thrilled to be the care giver and supporter to a new hero in the faith.

So today comes with a challenge for those of you who bear the label of Christian. Life’s challenges and trails are often difficult and rarely pleasant. But we need to maintain the hope that God’s word always comes true (Isaiah 55:11). We need to trust in God even when we have no idea why things aren’t going our way (Proverbs 3:5,6). We need to remember that God wants us to have abundant life (John 10:10). We even need to be thankful for the tough times we face, because that’s how we grow (James 1:2-5).

PS – today was nice…nothing really new. No seizures and still eating well. Took a little nap, but those seems to be getting shorter and shorter.

I have gotten a bunch of emails and a few comments on here about finding me on facebook.

Here is how:

1. Search for Darren LeBlanc
2. Browse till you find me. I am in 2 networks: 

Jersey Shore, NJ

United States Army

Also, if you are looking for me on myspace, my direct link is:
http://myspace.com/darnellewis

Lastly, you can also find me on LinkedIn here:
http://www.linkedin.com/pub/7/6b9/360

Last night I asked for people to continue to pray and gather prayer support for Misty. I also asked that everyone add their email to the mailing list. What I got, however, was not expected. I got 250 email addresses (this is a fraction of the 4000 unique visitors yesterday) with names attached to most. The name block was really an afterthought for me. I just added it in for the heck of it, but I’m so glad I did. Here’s why:

I read the list of names to Misty tonight and she was so touched. Some old friends, some new friends and many people she didn’t even know. As I read, she kept making faces to express her unbelief of the magnitude of support we are getting.  So thanks to everyone who added your email address. This was not at all my intent when posting that request, but it was a wonderful unexpected result. It is serving as a guest book of sorts for Misty.

If you have not added your email address to our mailing list, please do. The submit block will remain on the right side of this web page now for a while. Then go to your email and confirm it. If you don’t get the automated email message immediately, check yourjunk mail folder. Thanks for taking a few seconds to do this.

In other news, we have yet another day without a seizure. The little sick bug that seemed to be coming on has left and Misty felt pretty good today with no sore throat. Since it’s Wednesday and Olivia was out to church with my parents, Misty and I had another dinner alone (tonight was inside…it wasn’t very nice out). We had three cheese ravioli with spinach and kale salad (misty loves me for making her eat that raw green stuff…haha) and garlic bread with fresh mozzarella. It was quite good. Afterwards, we took a drive up the beach ending back just around the block from our house…at a lovely little place called strollo’s italian ice. For those of you who are not from my area, you need to understand…this place is as close to heaven as we can get on earth. So I hopped out and waited on the particularly long line for some delectable italian ices (and ice cream too). Misty stayed in the car anxiously waiting for the love of her life to get back (the ice cream, not me). We enjoyed our dessert with the windows down smelling the warm ocean breeze.

Last night also proved to be noteworthy. At about 3am Misty woke up. She was in her couch position for another pseudo sleepover in the living room and woke up to my typing. I had just about finished getting that email mailing list thing working and it started with some pretty nice lightning outside. No rain…just lightning. Misty awoke and really wanted to go outside. At first I was like “no way” beacuse I thought she wanted to sleep out there (this was our discussion the other night) but it turned out that she just wanted to sit out there for a little bit. So I pick her up and carry her outside, laying her down on the outtdoor reclining chair. I pull up a chair right next to her just in time to have the sky explode and release a torrential downpour. We were under an umbrella, but that didn’t really keep us dry. Misty started laughing and motioning to go inside.  Her smile is still only half her face (the right side of her body doesnt work right yet), but regardless, it was quite beautiful.