The Sovereignty Of God

It’s been a difficult season in our little world of leukemia. We bonded with & formed a connection with 4 families from UNC. In a matter of 2 months, 2 of those families lost their children to this disease… both children were under 5 years old. Even though these children & their circumstances were different from Keely’s, I found myself somber & in constant thought about their immediate family. I couldn’t stop thinking of how I would handle it. Just as I was starting to find peace & joy again, I got news that our mentors & friends, the Rosa family, discovered their daughter had a tumor on her bladder after beating leukemia & being off of treatment for 2 years now. (a quick fact: once you receive chemo, it has a risk of actually inducing other cancers later). This one hit me hard. It reminded me that having faith is actively trusting in God every single day… even long after this particular battle. Like I tend to always do, I isolated myself for a while. I used to think this was ridiculously unhealthy, but I am starting to see that isolating myself opens doors for God to speak without the noise of faulty-minded humans with human reasoning.

I started asking God, “why have these specific people been placed in our life?… what are you trying to accomplish in me/my family through your perfect placement?”. I was leaning on the sovereignty of God purely by faith (believing in the unseen), but still catching myself trying to understand how any good can come from a child dying?! God didn’t answer that question, but I’ve learned to stop asking “why?” & start asking, “what are You trying to do through this?” I’ve learned the question that I most want the answer to, isn’t always what He wants to reveal to me, & that He knows where I need the revelation. So, like He faithfully does, He revealed the answer to my first question…

Truth is, the sovereignty of God is something I’ve always had a hard time fully grasping. I understood what it meant, but wasn’t fully trusting in it. It’s a hard thing to fully trust in when you are faced with something like a child dying. I still don’t know why those 2 children weren’t meant to be healed in this life, or why Marisa has developed a second cancer & must battle this all over again at the age of 8. What I do know is, it isn’t my family, so it would be hard for me to see what God is doing in THEM. I know my family, & I have seen & experienced what God has done & is still doing in US. My pastor once said, “suffering comes from one of three things: from the hand of God, from the enemy, or from the result of our own choices. Either way, God orchestrates it all. & there is a reason! Stop asking, “why me?” & start asking God, “where are you at & what are you trying to accomplish in me through this?” This was huge for me! Not that I am one to ask “why me?”, but I have never thought to ask, “where are you in this & what are you trying to teach me?”. Seems like I tend to figure out what He was doing once it’s all said & done. Asking this question opened a door for God to teach me in the midst this time. & all I kept hearing over & over was, “the sovereignty of God”.

This was more than just blind faith (although that’s a good thing!!)… this was eyes wide open. This was a look at what my life could have & was actually heading toward had our daughter not have been attacked. The world will NEVER get how dramatically & beautifully our family was changed. No words will ever capture! We moved from ordinary Christians… sliding backwards, to radical… a family that as a UNIT has experienced & is continuously experiencing God in a powerful & real way. & then, because God’s timing is perfect, this week’s message at Journey was about inherited faith vs. adopted faith. Inherited being passive (Your parents/pastor taught it to you, so you believe it), adopted being active (you experience personally… it’s been tested, proven, & taken root in your heart). I realized that is exactly what happened with us. God needed us to see Him & know His character PERSONALLY. That’s when you know it is in your heart & it’s so rooted that you will never fall away, never depart, never stray, & never be convinced of anything other than its absolute existance!

So as God just kept impressing His sovereignty on my heart over & over, I began looking back over the last couple of years. He’s done it before, but God began piecing every single individual circumstance to what He was doing through it. EVERY SINGLE thing that has happened (big & small) that I thought, “why?”, had a reason . If that is my history in my walk with Him so far, why on earth would I not understand, PERSONALLY, His sovereignty. He is always trying to mold my heart into His image, whatever the situation is… there is something He is trying to get me to understand or change. I’ve also learned that  His order of things I need to change/understand is not what I usually think is next on the list of things I need to change/understand … & that’s another example of His beautiful sovereignty.

Before now, I really never gave much time meditating on (or much desire to ADOPT) the issue of sovereignty. & after these last couple of months of God dealing with me on it, I almost fall to my knees in worship at the thought that He IS that perfect. Experiencing & adopting the sovereignty of God is HUGE!… it forever changes how you react to & view every single circumstance in your life, & it gives you a real heart of worship! He knew that I needed to experience & understand that. He knew that needed to be rooted in my heart next. Life without experiencing God move is no life at all. It’s the most overwhelming, amazing thing a person will ever experience.

I pray that each of you spend time asking God where He is & what He’s doing throughout every circumstance, period of suffering, questioning, confusion, etc. in your life. He will reveal His work to you & you WILL be forever changed. There is just no subsitute for experiencing God. He will change you & He will mature you where it matters most.

Blessings.

Why Homeschool?

I’ve had so many people ask me “what made you decide to homeschool?… & “how long will you do it?”.

The answer to the first question is extremely complex!  Our reasons are broad. All of our reasons fall back to the one, most significant motive… God put it on our hearts.

He first put it on both Brian’s & my heart to homeschool about 2 & 1/2 years ago. I started researching & talking to many homeschool mothers, etc. Then, surprise!… we found out that we were going to be a family of 5. I immediately decided that I couldn’t be successful at homeschooling with 3 children so young & so close in age. (If I could only count the amount of mistakes vs. success in my life when I made a decision based on my own feelings/experience/limits instead of consulting God. The scale would quickly plummet on the failure side). I know in hind sight that I was putting limits on GOD, not myself… He called me to do it!… He would then provide me with everything I needed to be successful. Fast forward 8 months & Keely is diagnosed with leukemia. We were told that we would probably have to hold her back a year from Kindergarten or homeschool her. Now this is the radical Believer coming out in me, but I believe this: Cancer has been a blessing in our family… for reasons that stretch in many directions. No parent wants to see their child go through what I have seen my only daughter endure! But what if you could look ahead? What if, because of a disease (that she IS victorious over!), your ENTIRE family changed in a way that it probably would never have if it weren’t for this trial? It wasn’t as if we were broken before, but everything is more clear & direct… our goals for our children, our love for one another, what really matters, & especially our love & trust in God. I could go into so much depth here on how it has changed us for the better & how faithful God has proved that He is along the way. Words will never be able to capture what has happened in our family over the last 16 months! God promised that what was intended to harm us, He would turn around for our good. Our family is a living testimony to this (along with many, many other) promise. I believe that God knew our hearts… He knew we had the potential to be a family that glorified Him & His ways in a radical way. Can a family do that without something so traumatic happening inside of that unit? Absolutely. But maybe we couldn’t. Maybe that’s what had to happen for us to move from ordinary love for Him to radical love… a burning passion to please Him in what we do & secure our legacy as parents of a God-centered family. I never want to relive anything that we went through. & unless you’ve done it, you will NEVER understand what life with a child with cancer is like! But from this tragedy was born something extraordinary!

What are our goals?

Our goal is not to shelter/shield our children from reality. Our goal is to shepherd their hearts during these tender ages to better enable them to deal with that reality, based on a strength in their foundation. & that foundation is the Word of God.

Our desire is not for our children to attend Harvard (that is a worldly goal). Our desire instead is to center academics around God. That means more focus goes into character, building godly wisdom, love, servanthood, etc. than growing up to be something the world classifies as “successful” someday. (Keeping in mind that homeschool students are on average, 18 months ahead of their school attending peers in academics & out-perform their counterparts in pubic schools by 30-37 percentile points in all subjects). We have expectations for our children that absolutely include working hard & achieving goals (including academics), but if their character is poor & they grow up to be self-seeking, broken adults that don’t know or serve our amazing God… then we haven’t fulfilled our calling as parents. I want to raise children that are prepared for adulthood… to make healthy decisions as an adult without the constant direction of mom & dad. Most children are absolutely NOT prepared for adulthood once they are indeed, an adult. We have become a society that chastises young marriage because they simply “aren’t ready”… not your child’s fault, yours! You didn’t guide them into maturity. Young adults spend years making bad decisions & trying to “find themselves”. I don’t want that for my children.

Schools teach worldly wisdom & worldly goals. True wisdom comes from the Word. Knowledge apart from God’s Word does not exist. (Proverbs 1:7, 2:5-6, Col. 2:3, Psalm 111:10, Psalm 53:1). Our goal is to teach this wisdom without the confusion of what the world sees as wisdom.

God has given parents the responsibility to educate their own children. (Deut. 6:4-9) * stole the wordage for this here

For an argument on socialization that will rock you, see this!

“How long do you plan to homeschool?”….

This is a simple answer…. There is no set time. This is absolutely what God has called me & my family to do. I will do it until I no longer feel called to. Could be 3 years… could be until every child graduates. I follow God’s direction, not my own… I’ve found it to be much more beneficial & fruitful!

Seasons

One of the things I’ve learned in my 20’s is that life definitely has it’s seasons. Just thinking of the daily grind of life, 5… even 3 years ago vs. now is like comparing 2 different lives. Seasons are journeys. Journey’s end in more wisdom than you had before you began. I’ve learned not to second guess, wonder, fear, or doubt a new journey. If this is where God has called me, He will sustain me in everything I need to accomplish it. & on the other side is wisdom, a better me/us, & rich blessings as I obey His direction for me.

Our life as a family is coming to the other side of one journey (well, we still have a year left of treatments, clinic visits, etc., but have reached the point of smooth sailing), & are beginning another… & the entire downstairs is evidence of it! Starting in a few short weeks, we will begin our first year of homeschooling. I’ve decided that I would like to document this journey using this blog. Like Keely’s testimony, I can’t wait to look back in a year & see how much I’ve learned along the way. I’ll enrich it with pictures & other fun stuff. 

& so…. here we go………..

Adios 2009, Ni Hao 2010!

Every year at this time, I reflect on the year & ponder the goals & changes for the upcoming new year.

This year has definitely been the most pinnacle year of my life! In a single year, I gave birth 6 weeks premature to our third child & 4 days later, life took us on a whole new journey as our daughter was diagnosed with Acute Lymphoblastic Leukemia. We had one child at UNC, one child at home, & one child at Rex Hospital. So many people (including the many nurses & doctors we’ve come into contact with through all of this) have said to us, “how are you doing it?”. Looking back, I have no real answer except that we fully trusted in our God… that He was fighting our battle for us. We spoke His promises even when they hadn’t come to pass yet. We kept the devil out of the battlefield of emotions & in the battlefield of the Word, where we knew we would win! We praised Him daily even during the storm. We knew that Finley’s early arrival was God’s plan. He knew that I needed to be there for my daughter & that He would cover Finley with His protection.

We have had a challenging year. Thank God we are conquerors through Christ! In 2009:

• My walk with, trust in, & limits of God changed dramatically this year! I’ve been called a “radical”, but I’m okay with that. As a matter of fact, I think that’s what God is looking for in order to really move.
• I’ve learned a lot this year about where my focus should remain & how little everything outside of that really is. I’m actually thankful that I’ve gone through this. It changed me for the better. My family has grown closer & stronger in one year than I ever thought possible. We truly are blessed to have one another. We are a tremendous support for one another & the love in this home is just overwhelming! Some people will go a lifetime focused on things that have no real significance. Some will face a lifetime of mediocre problems, never REALLY having to rely on God. I have, & He has proved Himself faithful. He has shown me miracles, healings, strength, & the power of His spoken Word… & it’s life-changing! I will never place any limitations on God.
• I witnessed on an extreme level, the goodness that lies in the hearts of people. It was such a blessing to have witnessed this! It restored my faith in people that had been somewhat lost before this. Complete strangers went to extreme measures to show their concern, love, & support for our family. It was just amazing! I pray everyday that God will put in front of me, the opportunities to return the blessings!

So this year was much more of a reflection than a planning for the new year. I realized that my goals & changes this year are pretty simple:

• to appreciate & never take for granted, every single day that I’m given with the family I’ve been blessed with. We are bound together & if just one of us were missing, life would never be the same!
• to continue to grow in my walk with God by obeying Him, reading His Word, being Spirit led, never placing limitations on the One who created the very world we live in, quiet time with Him, & always giving Him time to speak to my heart. By being aware of when the enemy is attacking so that I can engage my full armor of God & not allow him to distract or defeat me in any circumstance! I am always a conqueror because I walk with the greatest One.
• to not only “teach” my children about God, but to live my life with Him walking right beside me… always available, always waiting, always faithful, always with me. I’ve learned something really important this year… We have been “teaching” our children about God for years now, but it wasn’t until Keely got sick & our lives really began to revolve around Him & His Word daily, in all situations whether good or bad, did our kids start to show real results of a God-centered life. Very few times when our kids are engaged in imaginative play, is Jesus not included. At night, when we all get together & pray, my daughter prays in the spirit (I’m not sure if it’s just because we do, or if she has already been baptised in the holy spirit, but either way, it’s just that normal to her). When Keely or Cale don’t feel well, their first reaction is to ask us to pray over them for healing (these kids are 4 & 2!). They have their own personal confessions that they speak over themselves every night & they understand why & the power behind it. & most beautifully, my daughter knows & says constantly that she is so thankful that Jesus died on the cross that day, because he healed her from something terrible. They would have never displayed these kinds of things in the past… even though we were practicing & active Christians, teaching them about God.
• to continue to speak God’s promises & watch them come to pass! & having done all… STAND.

This year I will start Keely’s first year of homeschooling. I’m excited & nervous. I ask for anyone reading this to please pray for me… for patience, time management skills (as I am caring for 2 smaller children & keeping up a home of 5 also), diligence, & complete success in what our goal is!

I also ask for prayers from our many prayers warriors for the good health, strength, & peace for our family as we start this year.

Biblical numerology: 20 (double) 10 (covenant) = the year of the double covenant. Sounds like hope for the new year to me! I’m so excited for our family to be walking with God in 2010! Blessings to all!

Life: I Couldn’t Do It Without Him

I’ve been thinking heavily lately on my marriage & the role it’s played over the last 7 months. When Keely was diagnosed, we were handed a book. In it, was tons of information… in that information, there was an entire chapter on marriage & the response of a tragedy in a family & the toll it takes on a seemingly “happy” marriage. I read many “chicken soup for the soul” exerpts on what happened to the marriages of the parents dealing with a child with cancer. Almost all of them resulted in divorce. Some said, “the focus was diverted to the sick child for so long that we lost our connection”… some said, “we had problems before & it was easy to ignore them during treatment, but once treatment ended, so did we.” I felt so sad reading these stories. I thought to myself, “if ever a time to come together, now is it! The child that we created together, the evidence that we are one, is sick!” I know & understand that everyone deals with tragedy differently & I try very hard not to judge (& hope that other people would do the same considering that we aren’t all the same & you can never say what you would do in “that situation” if you’ve never dealt with it).

Brian & I both knew as we traveled this journey that we couldn’t let her disease rule us, but instead, our family had to supercede the disease. God is so amazing… the times or situation that broke me down, Brian seemed to have it together… & vice a versa. We balance each other out.  We also knew that even though this played as a huge distraction, we HAD to keep a certain amount of focus on our own marital health in order to better deal with our circumstances. We never allowed ourselves to put the other “on the back burner”. How we did that… I’m still not quite sure. We stayed up late sometimes just to talk & be alone. We had “date nights” as much as our chaos would allow us. But mostly, we just laughed! That’s what I love about B. No matter how long we’re together, no matter what attack we may be under… we still have this uncanny ability to make each other laugh. Our sense of humor is so alike, so fresh, & so “inside”.

During the most trying time of our union, we have flourished! We experience a deeper love than we did 7 months ago, we’ve learned to lean on each other more, be more vulnerable, more dependant, more understanding, & more considerate. But we also didn’t lose anything, we kept our passion for each other & we continue to laugh! I wonder sometimes what life would have been like if I would have married someone different & gone through this… & I almost fall to my knees in worship & gratefulness to God… for foreseeing everything that would come in my life & giving me every tool to overcome… one of those very important tools being, the man I married.

I decided that during the month of November, Keely & I would talk each day about what we’re thankful for… giving thanks & glory to God. It’s been 7 years today since Brian & I fell in love… & today, I’m thankful for what some people will go a lifetime without… a truly beautiful, ever prosperous marriage. Life isn’t life without this!

7 years & 3 kids later… & passion & laughter is our secret… & we’re STILL learning!

Good Days & Bad Days

A friend of mine & a 5 year cancer survivor told me at the very beginning of this journey, “stand on the Word, always. You’re gonna have good days & bad days & that’s okay, as long as your faith is unshakable.” This past week has been a bit tough for me. I’m not sure exactly why. Maybe it was the Light The Night walk… seeing all of those gold balloons 😦 Maybe it’s the isolation that’s beginning to wear on me a little. Truth is, I don’t miss my old life… I’ve learned so much, grown much closer to God, & formed a much more mature & deeper appreciation for what matters. I don’t want to give those things back! They’ve changed me for the better, certainly. Still, I have good days & bad days. My heart aches for Keely & I’m reminded of how God’s heart aches for me (His child). I can’t begin to tell the world how thankful I am that she is here & fighting such a good fight. Recently, some friends of ours, lost their 18 month old daughter unexpectedly during the night. A perfectly healthy little girl who just never woke up. Keely is here… & fighting!

We all have our own battles. For everyone, it’s not cancer. With perfectly healthy children, it may be a turbulent marriage, or an addiction, or a sudden loss, or poverty, or troubled children, or inner battles… the list is long. Point is, whenever our situation seems really bad… I realize that there are many levels of “bad” & it varies for every person. I may think that our situation is worse than someone else’s, but it’s a struggle all the same. Yes, we have a child battling cancer, but we also have a beautiful marriage, a family unit that is destined to shine, a stable job, an amazing church family, & Christ! & soon enough, our lives will resume to normality. We can’t let the storms of life cloud the blessings!

Keely is on strict isolation this week (& most likely the next few weeks) due to low counts & intense chemo. We have really done our best to shield her from the things she is missing out on when she’s on isolation. Brian is taking Cale to LWFC’s Fall Festival & I’ve decided to have a “girls night” with Keely. I have all kinds of fun girl stuff up my sleeve. I just remind myself that this time next year, she should be able to pick up where she left off 🙂 and I figure Disney World will surely make up for it!!

Keely was delayed this week for chemo due to low counts. We will return on Tuesday in hopes of being able to start the Cytoxan & ARA-C. If that’s the case, she will come home from clinic still accessed & we will administer IV chemo at home for the next 2 weeks. I feel extra protective when she is home with the needle accessed, but since we’ve done it before, I know that everything will be fine & the 2 weeks will be over before we know it. Keely has been extremely blessed to be sailing through this intense phase with ease. She hasn’t been sick even once & aside from the steroids (roid-rage! shew!), she has had lots of energy & been in great spirits! It’s just amazing. Lots of kids have been really sick from clinic recently, so I have been SO thankful that although her counts are low, Keely has been really healthy!

I think we do an amazing job as a family of creating goodtimes with the most basic things. Whether it’s putting Cale in Finley’s walker & laughing until our stomachs hurt watching him stroll around in it, or dressing ALL of the kids up in princess gear & taking pictures to blackmail the boys someday (hehe), or using Desi for our amusement in someway that is just absolutely hilarious (& harmless, trust me… my husband tells me that I should work for P.E.T.A) Last night, we put this hat & gloves on Finley & role played… Finley was the Lion on Wizard of Oz as Brian did the talking for him “put ’em up. put ’em up”. You probably had to be there, but it was pretty funny. I thought Keely was going to stop breathing she was laughing so hard. Evidence:

& we had the annual “Light The Night” walk this past Saturday. We had such a blast! There were lots of fun entertainment before the walk kicked off… Keely watched a few dance teams perform, there were fun balloon hats, great food, & of course some amazing friends who came out to join & support us. Keely was able to meet some long time survivors which was really inspiring. & the walk itself was great! The weather was perfect for walking & the area that we walked was such a great location (starting at Fayetteville Street downtown & walking around the block, passing the capital building, etc.). Keely walked almost the whole 2 miles, Cale rode in style & Finley was all bundled up & slept peacefully the entire walk 🙂 We couldn’t have asked for a better evening. I look forward to being a part of it for many years.

* SILLY FACE *

And now… as I type this, I’m watching my daughter “doctor” her raggedy anne doll. Which includes, sedation (or a nap as the clinic kids call it) & a spinal tap (she even knew where to put the band-aid on her back once she was finished), a trip to the E.R. for a fever, & a mention of how she is done with her chemo & doing well because her hair is growing back. haha. Far from normal & a bit disturbing, but super cute at the same time.

This is OUR normal :)

This past month has been a series of controlled chaos. We moved into a MUCH bigger space. yippee. We had a housewarming/Bday party for Mr. Cale. Tons of fun & tons of people came to celebrate in our festivities!

… Cale, daddy, & Jack blowing out the candles

Keely had 2 & a half weeks off of chemo before entering into her most intense phase today. She finished up Intrem Maintenance on Sept. 8. She did very well through this phase! She was in great spirits & full of energy. Aside from the regular clinic visits, it was as if she wasn’t even on any chemotherapy. Today she entered a phase called Delayed Intensification. This phase lasts 2 months & then she goes into what they call “heaven” in the chemo world… the longest phase, called Maintenance (it last almost 2 years). D.I. is a phase in which they take the 4 most intense chemo drugs that she has gotten over the past 6 months & dump them into one phase. We are praying & staying positive that she will tolerate this phase with ease & the strength of her Savior! At least we know that this time (unlike in the very first phase where some of the most intense chemo was given), Brian & I know what to expect & can better comfort & deal with any obstacles she faces.

We have really been soaking up the past few weeks chemo-free. Keely has been her normal vivacious self & I have found myself holding onto glimpses of her being a kid again.

… Keely & I dancing to Bob Marley’s “Three Little Birds”

 

… Finley & Keely all jammied up & resting on mommy & daddy’s bed.

… Keely, Cale, & Toren opening gifts at the party. Her & Cale both played so hard with all of the kids. It made my heart beam 🙂

I was looking back at some of our photographer, Nancy’s pictures of the day we had her “head shaving party”. It brought tears to my eyes. I’ve seen those pictures a hundred times, but for the first time, I had a moment of reflection. That was only 6 months ago!… & Keely has matured SO much. I see other 4 year old’s play & hear them talk, & I realize that Keely isn’t a normal 4 year old. She has been around so many adults talking such serious business, that it seems impossible that she would remain an innocent child, shielded from the world. Our delivery of things as far as the way we talk & explain things to her is really not much different from an adult. She was just in the main hospital a few weeks ago getting an echocardiogram, & the nurse kept trying to distract her using “kid talk” & pictures of Dora & such. Keely was so annoyed & almost seemed insulted at the way the lady was talking to her. I was screaming on the inside, “just do the test lady! & stop treating her like a… like a… like a CHILD.”

I look at our lives & realize how far from normal we are… sometimes I see our friends & their lives with their children & I feel a bit sad, but most of the time, I see so many good things in our lives. Like the fact that our kids are so close to each other… they’re best friends. Most of the time, it’s unsafe for them to be around other kids, so having each other is all they know. & the fact that I look at Keely & am already so sure that God has something extreme planned for her life & that it will come to pass greatly because of this circumstance. & the fact that my husband & I have found strength, love, & joy in one another that goes beyond words. & the fact that I have found joy & appreciation in the smallest of things in this life… things that “normal” people don’t even look twice at. & the fact that I have seen God work through so many amazing people. It’s been a blessing to see the true goodness of people… evidence that God resides in our hearts. & mostly the fact that this entire family has grown closer to God through this trial.

Robb Thompson said that we should never run from trials & that we should want to face them earlier rather than later in our lives, because they reveal in us who we are & they prune us to carry out God’s will, to do the work called upon us by the Most High… the greatest works on earth. Our lives went from completely peachy to the ultimate trial in less than a week. & my prayer is that God uses this to transform us into servants pruned, prepared, & completely ready to carry out His mighty plan for us & to show the world His glory!

Help Keely “Light The Night” this October!

I hope this message finds all of you blessed and in good standing. As you all know, Keely was diagnosed with high risk type b A.L.L. (Acute Lymphoblastic Leukemia) on March 29, 2009. Since that day, she has had surgery to implant a port-a-cath in her chest for permanent IV use, been hospitalized on three separate occasions for a total of 14 days, had 8 ER visits at two different hospitals, 27 clinic visits, 83 individual chemotherapy treatments using 10 different chemotherapy medicines, taken hundreds of doses of 12 different prescription drugs at home, 5 blood transfusions and 3 platelet transfusions, had her port accessed 32 times, 12 shots, 4 IV’s, been put to sleep 10 times, had 10 spinal taps, and 8 bone marrow aspirations, 4 CT scans, 3 x-rays, 3 Electrocardiograms, 2 Echocardiograms, had to pee in a cup 15 times, had her blood pressure and temperature taken over 100 times, lost 10% of her body weight and all of her hair!! Over the course of the next 8 weeks she is scheduled for 8 clinic visits, 6 different chemo drugs, 20 individual chemotherapy treatments, 3 different times being put to sleep, 3 spinal taps and bone marrow aspirations and 14 days of steroid treatments. I know most of you read that and are in shock. We did not tell you that for you to feel sorry for her, but to be in total amazement at the work God is doing in this child’s life. When you see her and hang out with her for even a minute, if you missed her beautiful bald head you would never even know that anything was wrong with her. She is so vibrant, happy, energetic and full of spirit! She is absolutely by far the strongest, bravest person I know. She amazes us and causes us to fall more in love with her each day. She is a trooper, and quite frankly can take a needle in her chest better than most grown men I know! All of that this little 4 year old girl has gone through in the last 5 months, and she still has 2 years left of treatment. But she will not be beaten! She already has victory in this battle thanks to our Lord and Savior Jesus Christ!!

 With all that is going on, this family has truly been blessed! We are surrounded by awesome family and friends, including the greatest church on the face of the earth!! God has truly blessed us and we know that He will use this that the devil intended for evil, for the good of His Kingdom. Keely will have an awesome testimony and will be an absolute warrior for God.

 Keely’s treatment at UNC is top notch, and the actual treatments themselves have been much improved even over the last 5 years. Where as Keely is put to sleep now for bone marrow and spinal taps, less than 5 years ago they did not have the medicine to be able to put her to sleep. The doctors used local anesthetic and distraction techniques to perform those procedures. Just a couple of years prior to that, they could not even use local anesthetics and had to do it with no numbing or sedation… Can you even imagine doing that to a small child once a week, week after week? Like I said before, we are truly blessed and are thankful for all of the research that has made these advances possible. That being said, there is still so much more to do in terms of research and development for leukemia. They still have no idea what causes it or how to spot it early. Many doctors rarely see it and many times it goes undiagnosed for a while due to the lack of testing. Just a couple of weeks ago, we had to make one of the hardest decisions of our lives… to take Keely off of one of her chemotherapy drugs due to the side effects she was experiencing. None of the doctors and specialists could tell us at all what it would do to her prognosis to take her off of the drug. They just simply do not know…. they do not know!! The doctors and research professionals have come so far just in the last few years, but there is so much further to go.

 On October 17, our family will be walking in the Light The Night Walk in Downtown Raleigh to benefit The Leukemia & Lymphoma Society (LLS). We will join thousands of other people as we illuminate the night sky with red, white and gold balloons to show the world that we are relentless in our pursuit for a cure for cancer. This nationwide evening walk celebrates and commemorates lives touched by cancer. This year, we of course will be walking in honor of Keely. We invite you to join us in the fight to cure blood cancers and improve the quality of life of patients and their families. We would love to have you join us in the walk or if you cannot make the walk, there are opportunities for donations. You may sign up or donate online on Keely’s personal webpage http://pages.lightthenight.org/nce/Raleigh09/SpunkyPunky . We have set a goal to raise $2000 in 2009. This money will go to LLS for life-saving research and vital patient services and education. No donation is too small; every dollar makes a difference! We thank you in advance for supporting us in our efforts and for supporting the patients and families served by The Leukemia & Lymphoma Society.

 Please forward this message along to anyone you think may be interested in walking with us or supporting a good cause.

 Thanks,

Brian, Vanessa, Keely, Cale & Finley

 

God’s sweet voice brings God’s sweet peace

This blog is long overdue. I’ve been meaning to write it for weeks now, but my goodness my life is busy!

After my last blog entry, I went through a perilous time of doubt, fear, & worry to the point of being physically sick. I just read in Pastor Cho’s book about how our spirit supersedes our body & that when our spirit is suffering, our physical bodies become ill. How very true that is!

I was lying in bed a few days after that exhausting clinic visit, still unable to sleep for lack of peace. In the days prior, I had been meditating on healing scriptures & speaking them aloud. I knew that I had to get that Word rooted again in my mind & heart because of the looming doubt that I couldn’t seem to grip. I knew that the Word would renew my mind & give me the ability to take hold of those feelings & cast them away. Now I was in bed & I began to pray. I approached God boldly with His promises to me, His promise to heal my daughter if our faith was unwavered & His promise to give me His peace.  As I was praying, God gave me the most amazing revelation! Upon my heart He impressed this…

“I have given you everything you need to be victorious in this season! My timing is perfect! Think about it… examine the events over the past few years as a whole & connect them to this trial… because I already knew this was going to happen & I prepared you, I paved the way for you to remain in faith. First, I sent the Holy Spirit to draw you in to my Kingdom during the most inconvenient time for your family (Cale was only 2 weeks old when we decided to get up & go to church one Sunday after not even “church hunting” for over a year). Not only did you give your lives to My Son, but I placed you in a church that taught you everything you needed to know for this trial… they taught you the full Gospel, they taught you about healing & how to receive it through faith, they taught you how to build a beautiful marriage that possess strengths that can endure anything, they taught you the power of confession & the power of your words, they taught you to speak life, & they taught the entire congregation what church really is & how to fight our battles together… locked shields, side-by-side. Reflect for a moment on your transformation & how all of it was built around this day, each thing I place on your heart, each message that changed your life… it was all to prepare you for this trial… to show you how to stand on My Word & promises. To tell the world of My glory! Your daughter will do great things in My name. Victory, redemption, healing… is HERS.”

I couldn’t believe I had not thought of this before during the past 5 months. It seemed so obvious. I was asking Him for what He had already given me. & once I reflected & put everything together, I was once again, in absolute amazement over My God. His timing really is perfect. He opened our hearts at just the right times for exactly what He needed us to hear & know. He sent the Holy Spirit with such a force to draw us in at exactly the right time! He gave us piece by piece, His Word in the exact order we needed to know it. Piece by piece, He built our hearts with everything we needed to stand in faith during this time… & not only to stand so firmly, but to look beyond ourselves & focus on blessing others.

This whole event may have been the devils attempt to knock us off of our feet, but once again, God turned it around for His good. I realized that my faith was starting to shift from God, to doctors & medicine. Up to this point, the team has been so positive & so confident… & I was so confident in them… clinging to their every word on how Keely is doing. Suddenly they were standing in front of us saying, “we don’t know!”… “we don’t know if this particular chemo will keep her from relapsing”… “we don’t know what part of the cocktail works for which kids”… “we don’t know what her future holds”…. “there’s just so much we still DON’T KNOW”. It was a God check for me. They are humans just like you & I… they aren’t her final healer, but to a degree I was holding them to that standard. It was as if God brought me back to ground zero, to that first day that I really settled it in my mind that Jesus already died for her healing. When I put it ALL, her life on Him & said, “God You promised & You don’t lie, so here she is… she’s all yours! I’m taking her healing off of the doctors shoulders & giving it over to You.” 

Finally, for the first night in over a week, I slept. & I woke up refreshed with God’s peace.

* Isaiah 53:5 -“But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.”

* John 14:27 – “Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.”

& p.s. – Keely is doing fabulous since taking her off of the Erwinia. She is back to her old, cheerful self & is such a blessing. I am truly honored to be her mother!

… & so the decision is made…

As I sit here… at 4 o’clock in the afternoon, laying with my only daughter trying to rest from one of the most exhausting days of my life, I can’t help but think, “our life is so far from the average family’s right now.” I don’t mean that in the sense of “whoa is us”… it’s more of an observation/reflection of everything we’ve endured & how dramatically life changed for us in an instant. People always say that… “your life can change in an instant”… boy did ours! We are so far away from “normal” right now & STILL we praise Him… even in the middle of the storm. The worship team just sang a song about praising God in every season of our lives. As I stood there listening, hands raised toward Him, I thought, “If I can whole-heartedly, praise Him, worship Him, & love Him for who & all that He is during the storm of a lifetime… how easy it is going to be to do the same once we are standing on the other side of this… where He has already set joy before us!”

That was a rant, but I needed to just rant for a minute. Today was by far, one of the most mentally & emotionally exhausting days of my life. It’s right up there with the day Keely was diagnosed. I have kept the world update for the most part on where we are in this series of phases of chemotherapy. You all know that she had an allergic reaction to one of the drugs (the PEG-asparagus) & had to go on the ONLY alternative to this drug (remember: this drug does a specific job that the other chemotherapy drugs do not do), Erwinia. The last few weeks have been extremely difficult. Keely was having out of the ordinary reactions to this drug as well. She was going in for a shot of this every other day (remember: it takes 6 doses of this drug to equal 1 dose of the PEG). As the doses went from 1-6, & the drug was building in her system, she was psychologically suffering. She felt like she was going to come out of her own skin… she became more & more aggressive & out of control (screaming, physically abusing Cale, etc.)… she would be up from 8 am- 1 am (which for anyone that knows my children, is absolutely not normal!) & that was even after an entire day of exerting more energy than the average person can imagine. By the end of the first round (6 doses), she had lost over 3 pounds, she was so exhausted that her eyes were sunken in & eerily dark, &  it took over 5 days of not getting the shot, for it to finally work it’s way out of her system & for us to see our child again. By the end, her & I were both just plain exhausted!

Today, we were supposed to start the beginning of the second round of the Erwinia. Brian took her in to clinic yesterday for her regularly scheduled chemo (the vincristine & the methotrexate) & he talked to her Dr. about the past couple of weeks. They found that everything we were describing was very extreme & uncommon side effects to the drug (the Erwinia). They thought that she may have a blood clot in her brain that was causing her to become so extreme (blood clots in the brain are a side effect of the Erwinia), so they scheduled us for a CT scan this morning @ 7:30 am with a “parental decision pending” on continuing the Erwinia. So today, after the CT scan came back clear (praise God!), we had to make one of the hardest decisions of our life… whether to continue with this particular chemo or opt out.

You can’t imagine what it’s like to make a decision like this. No one knows if her not getting or even continuing to get this drug will effect her chances of relapse. Today I really realized that even with how far they have come with treatment for childhood cancer, there is still so much they don’t know. So the future of our child, is gently placed in our hands, for us to weigh. The doctor says, “Ultimately, we look long term, we want her around!, but we also have to look at the day to day… is this drug so toxic to her body that we could potentially be doing more harm than good. & when looking at medicine & using it in treatment, we all have to agree that we are using it for good at the end of the day. If we don’t feel that way, we have a hard decision to make… ”

I cried all day. Do I do what I feel is best for her stability right now & risk the burden of “not utilizing every single drug that could have helped”, or do we continue (remember: we have 3 more rounds of this!) & risk her health right now, knowing that there still are no guarantees even after having this particular drug? THE hardest decision I’ve ever been faced with. Since she has had the exact opposite reaction to all of the anti-anxiety medications they have tried, in attempt to be able to continue with the Erwinia while providing some relief… they tried one more anti-pshycotic drug today that they thought would help since it wasn’t in the same “family” as the other drugs tried. The plan was, to give it to her 1 hour before the shot, while in clinic to see if it was something we could use throughout the remaining 3 cycles. In less than 30 minutes, she was jumping off of the walls! It did the same thing that all of the other meds did… wired her! So with the help of the entire team, we all decided to take her off of the Erwinia.

The decision has been made & I HAVE to be at peace with it. Maybe this was God’s way of making sure that we really are relying on Him & not ALL of the chemotherapy to heal our daughter. I am writing this to let everyone know what happened today… & then I am releasing it…. releasing it to our Jehovah Rafah! I’m counting on God to be my stronghold, to be Keely’s final Healer, to give me wisdom & peace, to carry out His promise of a FULL life for Keely!

For the first half of the day, Pastor Micah was with us & for the last half, Pastor Bruce was there. Pastor Micah said some extremely profound things to me this morning that helped me to clear my head & guide me on how to deal with the enevitable  doubt that crosses our minds during any time like this, & Pastor Bruce… well I just don’t know where we would be without him. He’s been here since day ONE! He’s been here for us so much that Keely even asks, “where’s Pastor Bruce?” when she knows something serious is going down (& you wouldn’t believe how intuitive kids are about these things!). I am so thankful for the church that God placed our family in. I can’t tell the world how many times our family & friends have said “wow. you guys are a part of one of the most amazing churches I’ve ever been witness to.” They couldn’t be more accurate! We love them, we pray for them just as they pray for us, & we thank God for them every opportunity we have. Nothing can ever strip away all of the times they’ve been there when Brian & I were on our own as young parents going through the toughest time of our lives! Nothing can ever strip away the things they’ve taught us & the fact that we wouldn’t have this faith & security in God if it weren’t for their guidance! At the end of the day, Nothing can ever strip away the bond our family has with the people in LWFC… our brothers & sisters in Christ who will FOREVER be in our hearts. & the same is true for the entire team at UNC! Both of our Pastor’s commented today on the level of dedication & commitment to our family all of the doctors, nurses, nurse practioners, etc. are! They have been so good to us. We couldn’t have asked for a better hospital to treat our child!

At the risk of sounding a little weak in the moment… as I still stand on God’s Word & promises for  my daughter, I am telling the world, I CANNOT LIVE WITHOUT MY DAUGHTER! She is my wings to watch soar someday. I’m holding firm to my vision of her as a young woman telling the world about our Healer, our Deliverer, our oh so good God! I will focus & meditate on that vision until I see it happening right before my eyes. I am focusing on this vision & letting the decision we made today go. God is by our side & He won’t fail us, though we may fail Him. His Word will not return to Him void, but WILL accomplish what  He says it will!