lillydrive

2011-09-18T19:07:00.000-05:00

well, we are VERY blessed to have spent the day with Brian & Lisa. the greatest surprise came when we found out that they were doing THIS for us, Lilly, and the rest of the CF community.

the thoughtfulness of this gesture means so much to us and continually reminds us that we are not in this alone. if you are visiting this site because of the kindness showed by brian and lisa, then we welcome you and ask that you leave us a comment. we will continue to keep this blog updated (although not always consistently... as you can see :s) with news about lilly, her health, and our family in general. thank you so much for stopping in.

love wins,

lane, mindy, lilly, & wills

2011-03-07T13:42:00.008-05:00

Lessons in the Wilderness

This isn't primarily an update about Lilly; however, since there have been so many praying for her and asking how she is doing, I'm happy to report she is doing much better and believe she is coming "out of the woods." Her chest x-rays came back looking quite good, which was an answer to prayer. Her CT scan of her sinuses is in a few weeks and we are hoping and praying again that all will be clear.

The extra treatments she's in the middle of right now are a total drag to us and especially to her, but we continue to keep perspective as there are others suffering at much deeper levels than we are. The truth remains that no matter where any of us are or have been in our suffering, God is always enough. It's a blessing to see that unfold...to be able to see it, feel it, and taste it.

It hasn't always been that way. Not with only the journey we've been on with our daughter, but all of it. Life. Marriage. Kids. God.

These truths have been laid on my heart, lately & the heart-wrenching words in Hosea have become very dear to me:

"Therefore, behold, I will allure her, and bring her into the wilderness, and speak tenderly to her. And there I will give her her vineyards and make the Valley of Achor ('trouble') a door of hope." Hosea 2:14-15 ESV.

It wasn't until I heard this verse for the first time that I actually...got it. That was me. Even though I considered myself a "Christian" I felt very far from Him.

And in His sovereignty, He allowed that wilderness in my life. The time when I wasn't really trusting Him. The time I didn't really feel love for Him. The days of uncertainty and fear that haunted me. THEN, there in the wilderness, in His perfect timing, began to lead me out of it. And the best part...was how. Harshly? Cruelly? It's what I deserved. It's what Israel deserved. It's what Hosea's wife deserved. But He spoke tenderly to her. Tenderly.

When he dealt with me tenderly, as any wise father will with his daughter or Godly husband will with his wife, it began my understanding of Him. His true character and nature. It also began my love for Him. And from that everything flowed. I do not fear because I know His sovereignty. I trust because I know He loves me. I love my husband because I understand unselfishness. I forgive because He bears the weight of my sin on the cross. And with all of it, I'm still just a sinner saved by His grace. And it keeps me coming back to the foot of the cross.

I feel there are so many still in the wilderness around me. It's not a fun place to be. There's no life there. If you would allow me to encourage you: don't stay there. Soften your heart and begin to let Him lead you out of it. For me that was sincerely asking God to help me, guide me, show me. It was asking God to bring Godly women into my life that could journey with me. It was being honest with myself. It was learning & listening to teachers of the Word and reading the Word myself. It was reading sound books about God and not about how to fix or modify me.

Here's the deal: on the other side is what God desires for you; the deepest, richest life that is only possible with Him. God desires our joy! But first and foremost He desires our holiness. To get us there, he may need to bring us to the wilderness. Like John Piper says, God is the ultimate surgeon. He may need to cut and it may hurt, but ultimately it's for our healing. It's to rid us of the things that are killing us...the things that are robbing true joy to come. Don't settle for the shadow of happiness in this life. There is deep, rich, beautiful joy that awaits in this life that you can feel, touch, and taste. And it only comes from God...the God who finds you in the wilderness and as you nervously cower as He draws near, speaks to you tenderly.

Mindy

2011-02-18T15:09:00.000-05:00

this is in no way designed to raise alarm. it is, however, important to keep people up to date on what is going on. these are the facts; it is important to not add to/take away from what is written here.

the last two months have been rough ones for lilly. she has been fighting a CHRONIC infection/cough that hasn't gone away with three courses of anti-biotic treatments. the cough has continually kept her from sleeping well, she is averaging at least a day or two absent from school, and the continual frustration lies in moments when she coughs so hard that she pukes (which is happening more and more often these days). a few time she has spiked fevers out of the blue, complained of tiredness, and at times complains that her legs hurt so bad she can't walk.

today we saw her pulmonologist in GR and are going to begin try to get things figured out. we have a chest xray scheduled for monday, and then she will begin a new 28 day treatment of inhaled and oral antibiotics. the fear is that the chronic cough would be from either pneumonia or a common but dangerous bacteria to CF patients called pseudomonas A. both infections are considered treatable but the presence of those types of infections in a CF patient's lungs are both scary and sobering.

in 30 days we are scheduled for a CT scan (scarier than it sounds) to check her sinuses. considering she has had an infection that has lasted over 2 months, there are things that they want to make sure they aren't missing. something in her sinuses is not letting the infection go. she has had double ear-infections as well as just general crud.

it is important to remember that we don't any concrete answers yet. her doctors are trying to be very thorough and extra certain to not miss anything. we would appreciate prayers in the following ways:

* that her body would be protected from the course of drugs about to go into her system for the next month. while obviously meant to "heal" they will also likely wreak a little "havoc" in other areas.

*that answers would be found so she can get back into a regular routine of school & play.

*that we (lane & mindy) would have dedication and patience in the treatment regiment that is to follow. i made the comment to my best friend on the phone today that at times i just get SO tired of the treatment routine. this new course will double what is already a long process of giving her daily treatments.

*that we would maintain a logical perspective in all of this. this disease is not going to take our daughter's life any time soon... we have treatments and options: there are those that do not. there are those that have their time cut short with those that they love much too soon & there are those that continue to fight: the McCrae's, the Chandler's, the Cole's come to my immediate mind.

*that we would ALWAYS remember that He is enough/that He cares for her more than we could ever imagine/ and that ultimately she is in His hands. God is good regardless of our circumstances.

thanks you all for your love and prayer. may the Lord hear the cries of His saints for all who are suffering.

lane, mindy, lilly & wills

2010-12-08T09:40:00.002-05:00

realized i hadn't thrown this up on here yet.

lilly. year seven

2010-12-07T20:52:00.005-05:00

God's gift of rest.

Cystic Fibrosis is a genetic disease that, in a nut shell, eventually scars the lungs to a level where breathing becomes labored and eventually, impossible. while treatments continue to become more advanced, drugs continue to offer incredible hope for the future, and doctors have never been so sure that they will cure this some day, it still, at the end of the day is a disease where they treat symptoms... not the disease itself.

i share that because last night something really cool happened. not sure how else to describe it. our history with this disease over the last 7 years has been one of difficult frustration. because you really just treat symptoms (uncontrollable coughing), you are often left helpless in moments. when lilly gets "sick" her cough is constant and unrelenting. i shared in last night's post about the nights of real frustration when we would lay awake, listening to her cough ALL NIGHT LONG being helpless to do anything about it. after running the gambit of "relief tactics" (these would include but not limited to: 3 different types of breathing treatments/ chest percussions/ vicks vapo-rub on the feet and chest/ cough drops/ hot tea/ wrapping her in a blanket and sticking her head in the freezer/ propping her nearly straight up with pillows in bed/ to ANY other home-made or prescribed remedy that people recommend) we would just give up for the night and hope & pray that she could get relief. THIS has been our history for when she gets sick. a helpless feeling of not knowing what else to do. THIS is what we felt for the last week as night after night we dealt with this current infection. the SAME feeling of helplessness and frustration because all we were doing was treating symptoms and NOTHING, as usual, would TRULY help her stop coughing and give her rest.

i share THAT to, again, give a backdrop of what we were facing last night. when the coughing turned to puking and the puking started to contain blood... we took her to the ER hoping for their wisdom to help in the situation. at best... to get her fluids to help the vomiting stop... and figure out where the blood was coming from. i let my dad know and a few friends about lilly heading off to the ER, and in turn posted a request asking for "The Saints" to pray over good ole' Facebook (the prayer chain that reaches 1000's in one click) :) Slowly the call went out, and slowly i started to hear back from people that their voices were being lifted up in prayer to the great God of the universe. One of our close and dear friends even shared that her 6yr. old daughter decided to pray and fast her bedtime snack for Lilly... all the while taking "deep breaths for her since lilly could not" (a precious thought that brought tears to my eyes when i heard about it).

Mindy, meanwhile, was sitting in the ER with Lilly who up to that point, had puked two more times in the hospital. At one point after getting her IV, Mindy said that she (lilly) laid down her head, closed her eyes... and slept. No coughing, no vomiting... just rest. Now that reality could have 100 different explanations, the which i will let you decide... but it didn't end there. lilly continued to sleep the whole time she was hooked up to her IV and continued to be free from coughing. when i got the call from mindy 6 hours later that they were headed home, i expected to find lilly in a similar state that she left in, in terms of being unable to stop coughing (keep in mind she has LITERALLY coughed for a week straight... particularly at night... and in that given day it had been the worst). however, when they got home, i opened up the car to a tired, but smiling little girl. i took her downstairs, did her standard treatments, and put her to bed. she didn't cough once through her whole treatments, and last night... she slept... and slept... and slept... and did not cough ONCE. what was different? The Saints pestered the great God of the universe, and i think He answered their prayers.

i'm always REAL hesitant to be one of those "people" that claims seemingly simple things were "miracles." i don't know if i would call it a miracle... but i would say that God heard your prayers last night. God gave her rest... and it will be the start of the healing process... a GREAT start. your prayers absolutely blanketed her little body last night, and she simply didn't cough. that may not seem like a big deal, but trust me... with knowing "standard operating procedure" like i do with my daughter, to sleep without ONE cough while battling, among other crap, bronchitis.. she should have continued to cough all night. the IV was for dehydration... she had no medicine in her that could have done anything to soothe coughing... you can't soothe coughing in a CF patient anyway... it is CHRONIC. she slept because God heard your prayers (which He always does) and chose to act on them this time... and we are REALLY thankful for it.

so, today has been a good and restful one. lilly has started coughing a bit more this afternoon again, and tonight will be anyone's guess. we saw her pulmonologist in grand rapids today, and she got her set-up on everything she needs to kick all this crap. her docs are GREAT, and we felt blessed to have THEM see her today. it felt like we actually got to "do" something to help her :)

but God taught me something in the last few days: she is His first, not mine... and He has it all figured out. that isn't to say, pleading with the great God of the Universe does any harm, but at the end of the day, He loves her more than I do. :)

one last thing: our story is hardly unique or anywhere near the "worst one" out there, but it continues to give us perspective... and for that we are thankful. we, as a family, continue to hold up others in prayer who we see suffering a greater battle than we may ever see. our dear "friend" in dallas or the sweet little girl who is lilly's age in phoenix who are fighting their own battles with brain cancer/ the girl in lilly's class who lost her mother at the start of the year/ or my aunt who lost her groom of 40+ years on thanksgiving day.

their stories give us perspective and hope and a longing for our day when we "stand on shore and find it heaven/ touch a hand and find it God's/ breathe new air and find it celestial/ wake up in Glory, and find it HOME."

Love Wins,

Lane, Mindy, Lilly & Wills

2010-12-07T17:31:00.002-05:00

First off, this is Mindy writing. Lane has wanted me to contribute to the blog for quite some time, but I haven't quite been ready to jump on that blog bandwagon yet. I felt it was essential though, that I "blog" today, given everything that has happened recently with Lilly.

I cannot say thank you enough times for all the family, friends, churches, and even strangers that have participated in prayer for our little Lilly. I was overwhelmed and humbled by the outpouring of love and support that came through texts, phone calls, emails, facebook, etc. of everyone who was praying. THANK YOU.
I don't know how to properly express what I'm about to explain, because as "Christians" we all use that phrase "I'll be praying for you" and never actually do it -OR- do it, but don't think it's really going to do anything...at least that's been me most of my life. It hasn't been until recently that I've experienced and learned the importance, power and effect of prayer. After all, we are communicating with the Almighty God, Creator of the universe...who yes...is sovereign (Ps. 135:6; Eph.1:9-11; the list goes on..) yet has been known to change his mind (Ex. 32:9-14).

Monday night I sat in the ER with Lilly, after a long week of incessant coughing, no sleep at night, and her sounding worse and worse. She'd been vomiting most of the afternoon and into the evening and that wasn't stopping either. I knew her little body, after already being exhausted, couldn't take much more.
She continued to vomit up all kinds of nasty along with blood even as we sat in the ER waiting room. Her skin was so pale, and her eyes pink underneath, her cheeks spotted with broken blood vessels from all the coughing and all the puking. I've never seen her look worse. She couldn't walk, she was so weak. She just kept saying, "Mommy! Help!" It was one of the bleaker moments of my life...just feeling so helpless. I just kept asking God to help her, and feeling a little bit unsure if He was going to. The tug on my heart during these prayers was always, "I love her even more than you. Do you trust me?" I had to continually make that choice to trust Him.
Lilly got into a room and they hooked her up to some IV fluids, and after SO many nights of no sleep, SO many days of non-stop coughing, SO many hours of non-stop puking, she laid down and just...slept! And for the next 4 hours she just had...peace! I kept waiting for her to start coughing or puking, but she didn't. I had that time to think and pray and I knew people were praying, but it wasn't until later that night I realized HOW MANY PEOPLE were praying for her...so many people! I do not doubt that these hours of peace were the effect of so many of God's people asking for His intervention.
It was also during this time I had precious time to commune with my God. He gave me a great deal of peace, knowing that he loves her more than me. He reminded me that she belongs to Him. He reminded me that this is not the way he designed it to be...and her body will be made perfect one day.
I was also reminded of so many scriptures...some that I've been reading recently and others that I forgot I knew. I kept remembering that, when the storm hits, I have my home built on the strong foundation that is Jesus...but just because my house is built there, it DOESN'T EXEMPT ME FROM THE STORM.
I guess when (not IF, WHEN...)the storms hit, we need to ask ourselves, "Do I trust Him?" Even with our lack of understanding on why bad things happen, especially when it comes to our kids...Do you trust Him? It sounds like an easy Sunday School question, but it's one of the more difficult questions I've ever had to ask myself. I can lie and say "Yes, of course!" But God knows my heart...and the worst lies are the ones we tell ourselves. So do I trust him with everything? Do I know and understand that, no matter what is given to me or taken from me, that He is good? That He is enough? DO I TRUST HIM?

Lilly then ended up sleeping the entire night with no coughing and no more vomiting. It was the first night of sleep she's had in over a week. She woke up feeling refreshed, and her color began coming back. We went up to Grand Rapids today and her docs there, who've treated her since she was a baby, were able to answer more questions for me. She's on double antibiotics, several different breathing treatments, and a steroid to help her kick this double-whammy infection. She sees them again next week.
She's been coughing quite a bit today still, but for the most part is back to being agitated with Wills and up to her sassy ways. I think it's safe to say she's out of the woods for the most part...and I believe with all my heart that that is due to all of your incessant prayers to Jesus. Thank you for pestering Him with your prayers. I felt them and Lilly benefited from them. Continue to pray as she begins to recover.
Again I can't say Thank You enough. I pray that you will trust him with your circumstances as you walk through the storms of life, because He IS good and He IS enough.
"God is our refuge and strength, a very present help in time of trouble." Ps. 46:1.

2010-12-06T22:33:00.000-05:00

this was too long for facebook :)

Lilly is home. They said she "could" have been admitted but thought she would rest better at home, since we are heading to GR tomorrow for her "real" docs to check everything out. Found out from blood work that she ended up having a UTI on top of everything else... ugh... poor thing.

Lungs sounded good & chest xrays looked good which is a REAL relief and a hope that the blood in the puke may have been from the UTI and not her lungs. If you don't know a lot about CF, blood in her lungs could/ would be something pretty serious. this alarmed us more than anything. At 1st look, though, things looked good. Again, we'll know more tomorrow with her GR docs.

Would appreciate continued prayer. Tomorrow is Mindy's birthday, too!! :)

2010-12-06T19:38:00.004-05:00

as i write this...

...i'm at home with wills while lilly is in the ER with mindy trying to get uncontrollable puking from bronchitis as well as complications from her CF that at its pinnacle today was causing her to throw up blood along with mucus, under control. we are off to her Pulmonologist in Grand Rapids tomorrow unless they want to get her admitted tonight. from there, we will see what chest xrays & blood draws tell us. it could be something "easy" and it could be something "hard" to fight out of her lungs. tis' the season :(

the point of this post is not to be an alarmist. God is good and He will protect her in whatever fashion He sees fit. The point of this post is to, perhaps, reflect on the stirring in my soul right now for the brokenness of this world. it was always in moments like these... or when she is up ALL night coughing and wheezing for deep breaths that i (would) find this anger and frustration stirring in me. i used to think it was just because it was my own kid hurting... i have not so distant memories of being GENUINELY angry with God for not letting her breathe. pleading with Him for her to be able to sleep instead of cough so hard she would puke. i would be a liar to not admit my own cursing at God while holding her in my arms genuinely enraged at what i saw as suffering right in front of me. this all was coming at a time of INCREDIBLE spiritual immaturity and foolishness on what i thought God "owed" me. the reality was... i was stinkin' afraid. afraid of a situation i have/had no control over. afraid to trust that God, & His plan for my daughter in spite of her disease, was perfect and is His... not mine.

my feelings tonight are different. I have noticed this lately, but i maybe have been afraid to put it into words lest God would actually challenge me on it... but i'm not afraid tonight. scratch that... i am afraid... because i still hate seeing her hurt and suffer through all this crap. but i might say that for the first time in my life as a parent... i think i am actually willing to trust that God is sill, indeed, in control... because there is nothing i can discover, nothing that could happen, nothing that i would/ could/ will lose that will make Him anything less than the great God of the Universe. That's probably really cliche' sounding... but it is giving ME comfort tonight.

lilly & i talk often about the days that will come when we will be with Jesus. a place where simple breath will be perfect & deep. my prayer is that this will bring HER comfort tonight. a promise that it won't always be like this.

For He is before all things, and in Him all things hold together. Col. 1.17

Amen.

2010-10-28T22:43:00.003-05:00

today & tomorrow

i thought i would drop a quick note. it seems like the more life we live, the busier things get and the less time i feel like i have to actually sit down and write. tonight the kids are in bed next to us in the hotel. elizabeth mitchell is singing "you are my sunshine" on pandora for a little "night-time" lullaby music.

we are in Grand Rapids tonight with an 8 hour appointment slated for tomorrow that is a check-up for lilly. things have been REALLY good lately, and we see some positive changes for lilly. her lack of any REAL infection for months has been an odd change for the better. Her 1st four years of life it would be safe to say that she didn't go more than a month without being on SOME type of antibiotic. Now, in years five and six... we find her having not been on more than 2 or 3 during this last two year time spread. Some of that would come from her being older and smarter with where she puts her hands, and some of it, we believe, is a WONDERFUL mix of God's provisions through science and doctors as well as His beautiful & protective hand on her life and body.

mindy and i have talked very recently of the journey this all has been so far. i can remember like it was YESTERDAY the phone call/ the free-fall of fear my heart, mind, and body went through when we were hit with the diagnosis/ streams of tears/ the hands and bodies of friends and family holding us tightly and just letting us cry. i'm not sure any of us could have imagined how this would all play out. we still don't. but in a real maturing in my faith i have come to understand a few things: at the end of the day, the great God of the universe loved us so much that he gave lilly to us... exactly as she is. none of this has caught Him by surprise. all things pass through His hands. All things. this is hard for us to process some times because we think things are supposed to be "fair." God is good and so is His plan. lilly is a part of that plan and so are we... through all of our questions, fears, and triumphs. may God have the glory especially through the brokenness of this world.

lastly: everything we have is on loan from us. everything. my daughter included. how much of a blessing and a gift has every day been so far. i would rather have these last six years with the journey, as it has been, and have it all end tomorrow than not have had it at all. maybe that sounds silly or simplistic or naive. to us... it just makes sense.

thank you all for your prayers, encouragement, and love. pray that tomorrow goes quickly. these days can be long for lilly & mindy.

love wins,

lane, mindy, lilly, wills

2010-07-21T10:07:00.002-05:00

the prayer of my heart

"Oh to behold the Glory of Christ! Here in would I live, Here in would I die, here on would I dwell in my thoughts and my affections until all things here below become as dead and deformed things, and in no longer, any way, calling out for my affections"

John Owen

2010-05-21T20:41:00.004-05:00

god's provisions (this all came from a few recent conversations/ podcasts/ and books I am in right now)

so our life together as a family, we are discovering, has been scripturaly (sp?) sound. Not in the sense that we have been faithful and followed God's Word in our time together... that would be wonderful to report, but unfortunately, our human nature constantly gets the best of us. I mean... we, like so many others, knowingly or unknowingly, have begun to realize how this whole "life with God" thing plays out.

What I mean is this: I am beginning to realize that a lot (dare I say most) people who really don't understand the truth and nature of God and His promises view Him more like an ATM machine. How so? "Dear God, please give me this: __________." Maybe not in those exact words, but that is the essence of their hearts and therefore desires. Mindy and I have been talking about this a lot lately. The reality that if you REALLY understand God's scriptures there are a few "harsh" realities:

#1- Lest we be mistaken, God doesn't "NEED" us to bring Him glory. In other words, when people say, "I led someone to the Lord..." or "God has given me all these gifts, so I can bring glory to Him..." then that person is representing that they misunderstand the VERY truth of who God is. If you read the scriptures carefully, God will be glorified REGARDLESS of our choices, actions, motives. In fact, we, more than often, get in the way. My dear brother Matt Chandler said it best: "EVERYONE will bring glory to God whether they like it or not. Either as a trophy of His grace and mercy, or as an object of His justice and wrath." And I don't think he (Matt) is just referencing those that would flat out deny God & His glory. I think, even more so, he (Matt) is referencing those religious legalists who that think THEY brought someone to God or THEY are bringing glory to God through what they have or have been blessed with. What a joke. God will, indeed, USE us to achieve those things, but he doesn't NEED us. Don't confuse the two. Instead, I need to be grateful that I/we may be "elected" by Him (yeah I said it) to be in just the shadow of His master plan.

#2- NOWHERE is it written that life with/ following God is going to be free from hurt, heartache, troubles. EVERY apostle in the bible who sacrificed and followed Jesus had it end BAD for them. Heads cut off, crucified upside down, boiled in oil... I mean BAD stuff. Why do I mention this?! Because I am tired of clueless "believers" (myself and my own will too at times) complaining when things go bad. GLORIFY HIM IN ALL THINGS. What did you think you were signing up for?? Heretics that preach the prosperity gospel are fundamentally incorrect in their doctrine (follow God and your bills will be paid, your health will be good, etc.) What do those people DO when life goes wrong? Becasue it WILL. LIFE IS TOUGH. We, as believers, are not exempt from it. We get the PRIVILEGE of glorifying God THROUGH it all. ALL OF IT. Likewise, those that would pull "verses" out of the bible to prove a point/ preach God's desire for us to be HAPPY, prove their absolute simplistic and incorrect view of God. The bible wasn't written in "Chapters and Verses" originally. MAN put those in hundreds of years after the bible was written. Therefore, there is NO divine inspiration in SINGLE verses or CHAPTERS, only in the books. So, books of the bible are to be read and therefore dwelled on HOLISTICALLY. Which is why a verse like "God will give you the desires of your heart" is a DUMB thing to write/ base a whole world view of God on (inspiring millions of false teachings and writings). There IS truth in that verse, but not on its OWN as so many "prosperity" teachers/ believers tend to use it. The bottom line is: God is more concerned with our holiness than our happiness.

So back to our family life: Here is what Mindy and I are realizing- Our family is going to glorify God one way or another. We pray that it is though consistent focus and faith in Him. Secondly, life is going to CONTINUE to suck at times. The sooner we realize that fact, and prepare to count ourselves BLESSED that we can be trusted to suffer well and in turn praise Him mightily in all seasons, the sooner this family will be truly in tune with the very truth and nature of who our GREAT & and LOVING God IS.

I have no idea if this all made sense, but it was on my mind and so I cracked open my skull and poured it out.

Lane

2010-04-17T10:57:00.000-05:00

through much thought and prayer....

we have decided to go ahead with the study. mindy had a GREAT meeting with all the doctors yesterday and felt VERY comfortable after the long 6 hour day that it was, indeed the right choice to have her in it. thank you for your thoughts and prayers.

also, lilly had her annual chest x-ray and the results were that her lungs look the SAME as last year... which means NO change in lung function. God has TRULY kept his hand of protection over her through her first 6 years of life.

finally, LillyDrive shirts will be on sale through Tuesday. Let me know asap if you are interested in a shirt. They are $10 a piece and $4 of that money goes as a direct donation to the CF Foundation.

Love Wins,

Lane, Mindy, Lilly, and Wills

2010-04-09T10:33:00.001-05:00

big news is cause for BIG prayer for BIG TIME guidance.

so lilly has been asked to participate in a CF clinical study for a drug therapy.

This drug is possibly the breakthrough treatment we have been praying for and many CF patients have also been praying for for generations. the goal of the drug is to fix the basic defect at the cellular level and in essence would allow the body to function correctly. this would be HUGE news for the CF community because it would essentially allow CF to be a "livable" disease instead of a "life shortening" disease (35-38 current average survival rate).

the drug has made it through several successful phase studies and has just completed it drug study on adult patients. now it is time for the study to be done on children that are CF patients.

so prayer is needed in a few areas:

#1- whether or not we choose to participate in the study. lilly would be ONE of only THIRTY 6-11 year old kids in the entire nation participating in this phase of the study. this makes her participation important and also a little scary. any drug obviously requires testing but also contains risks. which is prayer request #2:

#2- that participating in it would not cause any harm to her system as it stands. a general blanket of protection over her as she would willing be succumbing to drug testing that would affect the way her cells would work thus the way her body currently functions.

#3- strength for mindy and lilly as it would be a 46 week study that would require some clinical visits... some lasting up to 8 hours.

#4- and IF we go forward in the study, that it would, in fact, work.

we will keep the community updated through the blog on what happens from here. we are planning on submitting the paperwork to t least register for participation for now with the choice to withdraw in the future if we decided to. thank you for your continued prayer and support as we make an exciting and equally scary decision.

remember lillydrive shirts go on sale in a few days. let me know asap if you want one as each purchase is a $4 donation to the foundation. (shirts are $10)

love wins,

lane, mindy, lilly, & wills

2010-04-01T14:52:00.002-05:00

lillydrive 2010 is here!

The new LillyDrive t-shirts go on sale April
12th (when we get back from Spring Break). $10 each and $4 of that is a
direct donation to the CF Foundation.

Buy a shirt/ support lilly/ look sweet :)
[i need the $10 if you want one with our preferred size BEFORE i order]

2010-03-14T08:30:00.006-05:00

lilly. year six

here is the link (CLICK HERE) our annual lilly video. enjoy to all & thank you for your continual thoughts and prayers.

link is also to the left
<----------------------

2010-02-28T09:03:00.007-05:00

as promised: pictures of "engedi" aptly names after the the retreat location of solomon and his bride spoke of in song of solomon. this house has been our respite from a crazy 8 years of (purposeful) inner-city living. we are currently trying to make this our permanent home but have run into some snags... either way, the lord has richly blessed us with an opportunity to let the kids run free without fear for their safety (well, except for falling out of trees, but i can live with those types of injuries).

The first two are after our most recent snowstorm(s). The rest, obviously, are from the summer & fall.

2010-02-27T23:36:00.004-05:00

so praying for a few things right now:

#1 we are having some serious housing issues. we believe profoundly that the Lord will provide. there too much to go into detail, but please just pray that we stay in his will. being unsure is scary when it comes to your home :)

#2 that lilly would benefit soon from some new treatments on the horizon. she has had a WONDERFUL run lately and hasn't been on more than ONE antibiotic in almost a year. that is AMAZING considering she was on a new one every 3 weeks or so since she was born.

#3 that our "friend" matt chandler would continue to also walk in christ's will. this awesome dude is fighting through brain cancer while leading a church, a family, and his own sanity. their blog is on here as one that we follow and mindy and i have become SMITTEN with them as a family, and matt as a teacher. for some reason he is REALLY on my heart tonight. through his teachings, we have made some great steps in our journey as believers, husband/ wife, and parents. thank Gos for matt, lauren, and their 3 BEAUTIFUL children.

thank you all for your continued prayers for lilly.

lane, mindy, lilly, wills

2010-02-09T10:45:00.007-05:00

sad news

http://livingwellwithcf.blogspot.com/

i was truly saddened to learn that lauren, a fellow CF fighter and a blog we follow, lost her battle with this crappy disease. what is surreal is reading back through her archive as far back as just the early summer where she was celebrating working out and increasing her lung capacity, to sickness in the fall, to losing her fight in november. prayers to her husband brad. i am truly sad and frustrated. :(

God's grace and comfort be with you.

lane.

2010-02-08T17:23:00.002-05:00

what we do on cold Michigan winter nights :)

2010-02-08T11:26:00.004-05:00

why i suck as a blogger :)

ok, so lilly hasn't died. and i don't say that with jest. some have wondered because i just flatout stopped updating this blog. that would be as a result of the fact that i STINK at blogging. i am going to make an HONEST effort to keep up with this more. here is a brief summary of where we are with things:

-we moved in may to a new house on 5 acres in the country. it is everything we have ever wanted and the kids LOVE it. TONS of space to run and play (pics to follow tonight hopefully).

- lilly has had an AMAZING run of health (knock on wood) as of late. when she had her tonsils and adenoids removed, the ENT said they were so swollen and full of mucus that they have probably been infected (minimally at least) for a long time. since that surgery, she has been on an antibiotic only ONCE in the last year. this in contrast to being on an antibiotic once every 3 or 4 weeks for the first 5 years of her life.

-her brother continues to grow like a weed and we thank the lord OFTEN for his health and being CF free.

things to think/ pray for: we still have to officially purchase our home (we are leasing right now) and we hope all the numbers come together. the market continues to suck right now and so there is always a risk that things could fall apart. we are in the house we want to live in for the rest of our lives, lord willing. #2 for obvious protection and health for lilly. the CF foundation has made some AMAZING improvements in the last years. we are TRULY excited in what has transpired in the last year of research. we believe that our daughter lives in a generation that will see this disease conquered. thank you all for your love. this is my new chance at trying to keep up on this blogging thing :)

love,
lane, mindy, lilly, wills

2009-05-21T08:31:00.003-05:00

we are taking a year off from doing t-shirts this year (if you hadn't noticed).

we are moving into a new house and have been CRAZY busy with stuff around here and so i have also been a REALLY bad blogger as of late. More, later (i promise) but for now, thanks for your love and support

lane, mindy, lilly, & wills

2008-11-17T17:21:00.003-05:00

pray for lilly

tomorrow we head for kalamazoo for lilly to have THREE surgeries (redo on the tubes that fell out, and then her tonsils and her adenoids). the doctor feels that this is the best choice because of the risk of bacterial infections that tonsils can cause. her tonsils and her adenoids are currently VERY enlarged and are causing multiple issues with sleeping, breathing, and general discomfort.

While these are not "dangerous" surgeries, they do offer a risk of infection. with all of this in mind, pray for a speedy recovery. sorry i don't update this as often as i would like...the last three months have been SILLY crazy. thank you all.

love wins
lane, mindy, lilly, and wills

2008-06-28T09:36:00.002-05:00

have you heard?

some great news coming out of the CF Foundation. a breakthrough new study that has successfully treated the basic defect in CF has passed through 3 clinical trials. that means...well, read for yourself CLICK HERE...and notice this as the last line of the article:

"If the clinical development of these compounds is successful, VX-770 and VX-809 could potentially add decades of life for those with CF."

ummm...can anyone say "amen?" :)

2008-04-17T19:00:00.006-05:00

the new 2008 shirts are here
we are now taking orders for the new 2008 lillydrive t-shirts. they are $10 and available in black. hoodies are also available for $25.

the ONLY order for the shirts will be going in APRIL 25th. if you are interested in a shirt, we need the money by then. payment can be mailed to our address and checks made out to lane gordon. you can also paypal the money for a faster route. my paypal id is:lanegordon@gmail.com

remember: $4 of EVERY sale goes as a direct donation to the CF Foundation. it is REALLY making a difference as we look to the VERY near future for breakthrough treatments. thanks for your support. love wins.

2008-01-07T09:06:00.001-05:00

thank you to Mitchell Mrozovich and Brandon Holczman for hosting the Stir of Echoes concert!

the two of them spearhead a venture that raised over $250 for lillydrive. those funds will be doubled by the CF foundation who matches dollar for dollar. what an honor it is to blessed to such amazing students and friends.

2007-10-11T07:17:00.001-05:00

it has been forever, and a day

sine the last post, but things are going well for us. we have been really busy being parents to two (those of you who have more, i have no idea how you do it, and you have my respect) wonderful children...the eldest of which, and whose name this blog spawned from, with her occasional lapses. she is a good big sister, who helps us out by making the run for diapers upstairs, keeping an eye on wills, and making him belly laugh like no one else can.

however, this is all coming with its equally annoying habits and choices. getting her slf out of her booster seat when the car is stopped (but not being able to buckle herself back in, bitting her brothers fingers just to see what happens, poking him in the soft spot when she gets mad at us (because that probably wont upset us anymnore than we already are, and her latest, pouring baby powder all over her room, in her cd player, on her 17 THOUSAND DOLLAR Chest-Therapy Vest and compressor, in our bed, and anywhere she could think. "Why??" you ask... "Because when you sent me to my room i didn't have any toys...i just didn't have any..."

i am sure we will laugh about all of it someday, but for now...we remain delightfully annoyed. thanks for all your prayers. i will try to do a better job of keeping this updated.

love wins.
lane, mindy, lilly, & wills (whose CF test was negative: including being free from even having the gene!!)

2007-05-26T16:40:00.002-05:00

channel 3 news cast

this is the news cast done on channel 3 wmmt out of g-rap featuring lilly and the calhoun area great strides walk. special thanks to diane daniels who put it all together. she was awesome

2007-05-13T12:52:00.001-05:00

one week left till the great strides walk

one week left to register for the walk. the 65 roses fundraiser went off amazingly and we were so blessed for the students to put such an effort into something so close to us. here is the video that is sang to at the end. we love you all and continue to pray for treatments and cures.

if you want to donate to the walk, or to lillydrive feel free to email us for contact info or just use the paypal account. our paypal ID is lanegordon@gmail.com. God bless you ALL.

Lane, Mindy, Lilly, and the new addition BABY WILL!! (born 5.9.07)

2007-04-06T10:22:00.001-05:00

2007 lillydrive & great strides kickoff commercial
(scroll down for t-shirt info and samples)

2007-04-03T08:38:00.001-05:00

remember!!

t-shirt orders (with payment of $10 per shirt) must be received by april 20th. we are only doing this one order so if you want a new 2007 design, then get on board. sizes available are: youth medium, large & adult s-xxxl. you can mail or paypal payments to me. see info in the t-shirt post.

2007-03-19T21:28:00.001-05:00

great strides walk
may 20th, 2007 in battle creek

we need walkers that are ready to really help out. last year we fell way short of our goal, and we really want to make up the loss from last year. CF is getting close to some final stages of SERIOUS breakthrough treatments. as usual, all that remains is funding to work it all out.

please visit the foundation and register for our team LillyDrive. get started on your donations and we will see you this year for what we hope will be a great walk.

love wins.

2007-03-19T21:09:00.001-05:00

the new 2007 shirts are here
we are now taking orders for the new 2007 lillydrive t-shirts. they are $10 and available in red, green, and grey. hoodies are also available for $25 and are available for $25.

the ONLY order for the shirts will be going in APRIL 20th. if you are interested in a shirt, we need the money by then. payment can be mailed to our address and checks made out to lane gordon. you can also paypal the money for a faster route. my paypal id is:lanegordon@gmail.com

remember: $4 of EVERY sale goes as a direct donation to the CF Foundation. it is REALLY making a difference as we look to the VERY near future for breakthrough treatments. thanks for your support. love wins.

2006-11-28T08:31:00.001-05:00

Year three has come and gone.

This video starts the day after Lilly's 2nd birthday and takes you through her third year of life right up the day of her third birthday.

Please donate and get involved to help find BREAKTHROUGH treatments and cures. Nearly $.90 of every dollar donated goes directly into needed research and programs. We thank God for our challenges and try hard to look to Him in Good and Bad times. Love wins.

2006-10-29T14:05:00.001-05:00

So this little girl is going to be THREE in a month. We are so blessed by her. It is SERIOUSLY amazing how much she has influenced and changed both me and Mindy for the better. Her impact on our lives is so profound and positive that I can't imagine life any different. We wouldn't change anything. She is the perfect compliment of love and compassion...blended wonderfully with typical three year old disobedience and defiance.

Pray for us as we continue to love and search for patience :) Also pray for us as we plan for baby #2. CF is a very real possibility with this child too. We pray for God's mercy and grace in whatever the outcome. Another child JUST LIKE Lilly would truly be awesome.

Enjoy the clip. This is our ULTRA hyper daughter :)

P.S. PLease start to plan, pray, and prepare for LillyDrive and the CF Walk coming in late March/ early April. We want to do a lot better this year. Every dollar truly helps.

2006-07-24T14:52:00.001-05:00

This is a quick clip of Lilly in her new vest.

It performs chest therapy for her and has blessed us with a much needed break from the regular routine of chest therapy...and we LOVE it. Continue to pray and lift her up. This vest will help with consitency in treatments and she seems to be adapting to it well. Thanks everyone!! We Love You ALL.

Love Wins,

Lane, Mindy, Lilly

2006-06-29T15:36:00.001-05:00

love wins.
even though this post isn't about lilly, i wanted to take a second and link the lakeview graduation speech here. this was an awesome day that i am happy to have been a part of.

i again, for the six-thousandth time, want to thank rob bell (pictured above) for his inspiration and teachings. this concept and 80% of this speech is his. i thank him for that and i am so glad to be on the journey with him. check out more of his teachings at http://www.mhbcmi.org

the link is to the right ---->

2006-05-22T16:01:00.001-05:00

**check May archive to see ALL the pics from the walk**
great strides 2006
has come and gone. it was an awesome day, and while we didn't meet our goal of funds raised, we still made a dent in the process. if we truly believe that EVERY dollar counts...then we made 8k+ dents. thanks to ALL who helped.

we are so blessed to have friends and family around us, supporting us, like we do. thank you all for everything. keep praying for lilly as she fights this disease every day of her life. check back here often for updates as the next few months may bring some good news for us in the way of treatments. GOD BLESS!!

Love Wins,
Lane, Mindy, Lilly

2006-05-22T15:59:00.000-05:00

2006-05-21T21:49:00.003-05:00

walkin' for Lilly.

2006-05-21T21:49:00.002-05:00

2006-05-21T21:49:00.001-05:00

2006-05-21T21:48:00.002-05:00

Sir Jam a-lot in the HOUSE!! Lilly was SCARED TO DEATH of him... HAHAHA!!

2006-05-21T21:48:00.000-05:00

2006-05-21T21:47:00.001-05:00

2006-05-21T21:47:00.000-05:00

2006-05-21T21:46:00.000-05:00

2006-05-21T21:44:00.000-05:00

2006-04-13T09:35:00.000-05:00

year two video is up and running. enjoy -------->

2006-04-09T17:52:00.001-05:00

this is lilly

She is the face of a new generation of people suffering with a genetic disease called Cystic Fibrosis. She is also our daughter. CF has life-threatening effects primarily on patient’s lungs and pancreas, and while this disease has always been around, it is only recently that researchers are finding new and inspiring ways to fight and, soon, beat CF.

We that know this disease personally continually gain hope that the day will come when those we love will be granted lives no longer adversely affected by CF. We CAN and WILL beat it. Every day we hear reports that researchers have found or are in the process of trying something new, novel, and hopeful. These steps toward a cure, however, come at a price. CF is grossly under funded by outside sources.

The Cystic Fibrosis Foundation is the main source of funding and awareness for this disease that would otherwise likely go unnoticed by those not affected by it. The foundation sponsors the annual GREAT STRIDES WALK in an effort to raise money for treatments and cures.

This year’s GREAT STRIDES WALK is being held on Sunday, May 21st, 2006, at Leila Arboretum in Battle Creek, MI. Last year we were able to surpass our fundraising goal by almost $10,000!! It was only possible through people like you. Your donations are the KEY to success against this disease. Almost 90% of every dollar donated goes directly into needed research and programs. With another year of success we, along with others nationwide, will be taking another huge step towards our final goal…Life for those affected by Cystic Fibrosis.

How can you get involved?
• Walk (to join our team, please log onto www.cff.org and register for the walk. The CFF will mail you a walker’s packet and you can join the “fight”).
• Sponsor a walker though your generous donation. Remember, nearly 90% goes directly into the “battlefield.” Please make checks payable to the Cystic Fibrosis Foundation.
• Purchase a Lillydrive.com T-shirt. (See Post BELOW) For $10 you can have a T-shirt that helps raise awareness, and look cool doing it. $4 of the purchase goes as a donation to the CFF and GREAT STRIDES. Please make T-shirt Checks payable to Lane Gordon.

-To pursue any of these avenues of help, Please contact Lane Gordon at 269.962.5642 (Room A210 at Lakeview High School) OR email us at lillydrive@gmail.com for questions or ideas for involvement. Please don't be afraid to contact us. We would love to hear from you and help get you involved with as much or as li
-God Bless and Thank you for your kindness...Love wins,
Lane & Mindy Gordon

2006-01-31T09:20:00.001-05:00

lillydrive t-shirts & sweatshirts
This is the design for the new T-shirt. Prices will be $10 (with $4 of that going as a direct donation to the CFF).

The Picture on the LEFT is an actual picture of the GREY and BROWN shirts. There is also a RETRO Light BLUE available. The picture on the RIGHT shows that color of blue.

The picture of THREE different colors is to give you an idea of what the shirt will look like with the logo design. The shirt won't actually be THREE colors. You will choose either GREY, LIGHT BLUE, or BROWN. There are also HOODED Sweatshirts available in the BROWN and GREY. They are $25 a piece.

Both T-Shirts AND the Hoodies are a Poly/Cotton blend (show the quality is AWESOME. Not your typical cheap t-shirt).

There are NO personal profits from any of these sales. These t-shirts must be ordered and purchased DIRECTLY through Lane Gordon or a walker on TEAM LillyDrive. There is no ordering for these particular designs through the website. The money will be collected at the time of the order and the entire order will be made at the end of April/ beginning of May. If you purchase a shirt through a walker they will be responsible for getting you the shirt (or you getting it from them). It is our desire to see these shirts ALL over town and the surrounding areas. We plan on making a new design as an annual sale before the walk. So get in on the revolution :)

E-mail me with questions or for order information.

2006-01-31T09:19:00.001-05:00

great strides Cf walk update!!

The 2006 CF walk will be taking place on MAY 21st, 2006. Please start thinking and praying now about your involvement in this. The walk is the MAIN fundraiser for CF and is VITAL to continued research. Hope all is well. God bless!

2006-01-28T11:05:00.001-05:00

new t-shirts available soon!

New LillyDrive t-shirts will be available in the next few weeks. These shirts are awesome quality and we will have actual wearable examples for all to see. If you are a Lakeview High School student, orders will be taken at school. If you are not, then shoot us an email and we can send you a pic of the shirts. The shirts will be available in Chocolate Brown, Heather Grey, or Light Blue. They are Poly/Cotton blend and are REALLY cool looking and are only $10!! Get ahold of us and pick one up!

2005-12-30T22:01:00.001-05:00

merry christmas

Well it was a wonderful Christmas & we are so blessed to have such a great family around us. It has been great spending time and making memories with all those close to us. Lilly has been doing really well and the doctors remain very positive every time we visit. What an amazing gift from God they are.

Lilly continues to grow into a little lady. She is so active, funny, and bratty some times...and we love it. Life remains a constant trip with a two year old. Enjoy the pics.

2005-12-30T21:58:00.000-05:00

2005-12-30T21:55:00.000-05:00

2005-06-25T09:41:00.001-05:00

We spent the day at Lake Michigan. Lilly loved it. Enjoy the pics.

2005-06-25T09:40:00.000-05:00

2005-06-25T09:39:00.001-05:00

2005-06-25T09:39:00.000-05:00