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!

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.

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!

Pressing on & pulling through. That’s what we do… we’re Thompsons!

So, as many of you know (but don’t fully understand… & I completely get it… all of the medical hoopla is just overwhelming), Keely has started her 3rd phase of treatment… finally (we were pushed back for 2 weeks due to low counts). I won’t go over it all again, but she had an allergic reaction during her last phase & is now on an experimental drug, which is “the unknown” & also puts us in clinic 4 days a week. I don’t ever want to be a complainer, nor do I want to speak negative things into her life, but I do however, want to document exactly what’s going on, since she will be looking back on this journey via this blog someday.

She is into her 3rd week of a 10 week phase. She gets a shot every other day along with her normally scheduled chemo for this phase. This one has been hard. It’s been since the very first month since she has thrown up or had any major issues, but they have all reared their ugly head through this new drug. She vomits every night after each shot… & they haven’t found an anti-nausea that works for her. It’s terrible & completely heart wrenching to see my 4 yr old daughter so sick. She is having bad reactions to the drug in the form of feeling like she is going to jump out of her body from the inside, she has terrible mood swings, & aggression issues. Brian & I have been strong through this, trying to maintain some discipline while also remembering that some of these things she has no control over. We look at each other at the end of each week & say… “one down! pressing on….”. My Pastor said to me the other day, “remember the joy that the Lord has set before you”. wow! I was having such a hard day & suddenly I took my focus off of “this moment” & directed it to the blessings & joy that this family is going to receive once this test is passed. It almost gives me chills! We KNOW she is healed… that isn’t even questionable in our minds. Our feet are so planted in that knowledge that I don’t think anything could uproot us. It’s just getting through the test. Laura Tapp once said something pretty profound to me… she said, “everyone always talks about the testimony, but rarely the test.” So true. You hear about the end, without understanding what it took to get there.

I did get to talk to her doctor about exactly how she is doing in terms of how well she is responding to the chemo & her long term prognosis. Her answer was just so great. Even though Keely is a high risk leukemia patient (which makes her more susceptible to relapse), Dr. Blatt said that she is responding incredibly well to the chemo, which means that she will most likely not ever relapse. She is doing phenomenal! She isn’t feeling that way, but she’s beating this thing! The doctor’s & nurses tell us that a child has a better prognosis depending on how the parents respond to the disease. THE PARENTS!… not the child. Because of OUR faith, she is healed! Because we speak positive words over her, she sees her situation the way we do. She shines, because we shine. She believes she is healed by the stripes of Jesus, because we do! Her only way to interpret her situation is through our reaction to it. So we will continue to walk into clinic with a smile, praying to bless someone hurting on that day, we will continue to live as normally & as positive as we can, we will continue to believe in the power of our God! What is there to be negative about? Yes it’s a tough journey, but there is the other side… & my God it’s beautiful. Praise Him for this day!

We speak this over her nightly & during every dose of chemo: Isaiah 43:1-3   (& I’m paraphrasing to substitute Keely & her circumstance into His Word. Remember, the bible is our love letter from God… we HAVE to include ourselves!)   “But now, this is what the Lord says- he who created you, O Jacob (Keely), he who formed you, O Israel (Keely): “Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters (of chemo), I will be with you; and when you pass through the rivers (of chemo), they will not sweep over you. When you walk through the fire (of chemo), you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Savior.”

 On a much, much lighter note, Finley had a 4 month check up last week & the news was just amazing. He is doing so well that they have taken him off of the “preemie” growth chart & put him right in with the full term babies. Granted, he is only in the 20th – 30th percentile for everything (weight, height, etc.), that’s pretty friggin awesome! God really knew! He knew Finley needed to come early, He knew what we were about to face, & He knew that He would make sure Finley soared! How can I NOT trust Him in everything?

I Don’t Usually Do This, But…

I am asking everyone to please pull together & pray for Keely & I this week. Starting tomorrow (as long as her counts are a-ok), she starts her next phase of treatment. Here’s the catch…

This phase was supposed to be a bit of a break (our next phase is the last before the “maintenance phase” & it will be hard! It’s their last attempt at hitting her really hard like they did in the very beginning before stopping all treatment except a little pill she takes every day during maintence & going to clinic once a month… chyeah, maintenance is gonna feel like we’ve made it to heaven). But since she had the allergic reaction to the PEG shot, she has to have the alternative to this chemo… so instead of one shot 3 different times in the next 8 weeks (which would’ve been the PEG shot), her whole plan of treatment during this phase has had to be changed. This particular chemo does a job that none of the others do, so it’s important (especially since she has high risk leukemia) that she get this drug. She is having to get the alternative, which is called Erwinia. This drug is not FDA approved & we are now in an experimental study. She is already a part of a clinical trial protocol, but it’s not experimental… it’s been going on for over a decade now. This new drug, Erwinia has not been around for very long & they are still finding out the side effects & more importantly… long term effects of it. This poses a WHOLE LOTTA red tape. The PEG shot is sort of like a booster… it is a large shot given intramuscular that slowly releases over 7 days, the Erwinia is fast releasing, so it has to be given 6 times to equal 1 time of the PEG.

Starting tomorrow, we will be in clinic 4 days a week. She will go in tomorrow & get the shot (it’s a shot, not an infusion through the IV like the other chemo’s). She has to have labs drawn before, & then again 2 hours after. Her & I also have to go up to the main part of the hospital & have an EKG done(heart failure/defects is one of the side effects that they know of)… & this whole process has to go on EVERY SINGLE time she gets this shot. Then we are back exactly 24 hours after getting the shot, on Wed. for more lab work, etc. She will also be put to sleep in the morning for the first time in about 2 months for a spinal injection of Methotrexate (a chemo drug that was part of this phase separate from the Erwinia). One round of the Erwinia is a total of 6 shots. So… follow the cycle… Tues-gets dose #1, Wed-labs, Thur-gets dose #2, Fri-labs, Saturdays & Sundays off (thank God!). Then we’re back on Mon to start dose #3… and so forth. Since she has to do these 6 shots, 3 different times through this phase… this will be our life for the next 8 weeks. A total of 24 shots every other day, with labs drawn on the off days.

So… that’s a whole lot of information to say this. We need prayer. It’s alot!… for her & for me. Brian will be out of state this week on a mandatory business trip. So I’m on my own to start this unfamiliar journey with her.

Please pray that Keely will hold strong, having to do this every single day (getting accessed AND getting a shot every other day *ouch*, & just being in clinic 4 days a week for the next 8 weeks… that’s so much for a 4 yr old), pray that the chemo goes into her little body & kills everything bad & leaves everything good unharmed! Pray for a sound mind (in the decision we made to indeed choose to give her this drug because it has such an important job in her treatment plan, since we had the option to decline), pray for my strength to get through this first unfamiliar, hard week without Brian.Pray for the boys!… because they pay the price for these circumstances as well.

I know that having a spirit of dred is not godly (I believe the Bible refers to it as “evil forebodings”), so I want to ask that you also pray for the Holy Spirit to give me a spirit of peace, comfort, & gladness, fresh each morning.

… & this too shall pass.

Thank you everyone for all of your amazing support. I don’t know where we would be without all of you!

God speaks! & it’s always right on time.

Walking with God… is there really a good way to describe it? EXPERIENCING God… even harder to describe. Oh, but how amazing it is! I can’t believe I ever lived without it.

Throughout my 2 yrs of walking with God, soooo much has happened, both in my life on the outside & in my spirit on the inside. I won’t go through all of the examples… my blog entries are already too long. Tonight wasn’t the first revelation of this point, but definitely worthy of sharing it….

I have been amazed over &  over at God in so many ways, but one of the most significant ways is the way He ALWAYS finds a way to speak to me in the midst of an “issue” for me… during a time that I am diligently meditating & seeking a specific word from God. I think a huge part of that is the Holy Spirit opening my eyes & making me aware of when & how God is speaking. I’ve learned that He uses SO MANY avenues to speak. Discerning the voice of God has to be one of the most amazing experiences & blessings in all of my life!

My last blog was about anger… it ended with my feelings of disappointment in failing God & how I felt unworthy to even have the priviledge to have this relationship with Him that I do. This recent anger & feeling like the only thing to do (because I didn’t know what else) was to back away from God a little in shame of myself… “whoa is me”… I know!, sparked an opening in my mind that allowed satan in. I started having thoughts that I clearly knew were wrong, which put me in a deeper place of disappointment to God, which was another reason to back off. oh the tangled webs we weave.

I went to Sunday night service at church tonight to hear Susan Ramsey speak on healing & how to receive it… & 2 of the greatest things happened! God was just all over me in that place. #1- the entire church lifted their hands to God & prayed in the spirit over Keely. I could just invision Keely’s body coming in line with God’s word as I stood on that platform with Pastor Steve! It was amazing.

#2- when Susan first got up to speak (mind you, she was speaking about healing), she said that as she was standing during praise & worship, the Holy Spirit gave her a word that she felt like someone in the congregation needed to hear & understand before she went on with her full message. She was right!… that person was me! She talked about righteousness & how so many Christians don’t really understand what “righteousness through Christ Jesus” means. I was one of those Christians before tonight. I have not understood at all what that meant & have actually tried to do a little research in the past to understand because I was so lost on it’s meaning.

She talked about how when we fall prey to our fallen nature & feel as though we’ve failed God (through thoughts, actions, something we watched…. the list goes on & on & is different for each of us) that we feel unworthy of coming to Him out of shame or an “I’m just doomed now” attitude. Righteousness through Christ Jesus is a gift that Jesus gave us through his death that allows God to see us completely different from how we see ourselves. He doesn’t see the sin & that bad thought, or that mess up… He sees Jesus drapped over us when we come to Him in repentance. He sees us clothed in beautiful white garments, glowing, & perfect. THAT… is righteousness through Christ. So when the enemy gets into our head & convinces us that we’re too filthy to be in the presence of God, we need to remember what righteousness is.

Righteousness through Christ never goes away. We aren’t just “poor sinners saved by grace”, we are righteous through Christ Jesus. We are worthy of His love, no matter how we fail Him. We are conquerors & we can always go boldly to the throne for forgiveness & to ask & believe to receive everything God wants for us… & God wants us to have an abundance, overflowing, without room to hold all of the blessings he is just waiting to give us!

I came across a REALLY good blog called “Daily Rhema” (for those who don’t know, rhema is the Hebrew word for “revealed words”…. refering to THE Word/Bible). He described in ALMOST as good of detail as Susan R. about what righteousness through Christ means… & even he comments that most Christians don’t fully understand. If we did, we would be stronger in Christ. I have put a link to his blog if anyone cares to go & read deeper into this. Every Christian should FULLY understand this. I didn’t realize how vital it is in determining where I go during times of confusion, disappointment, sin, etc. Now I know I can go to God with the beauty of Him not seeing me in my filth & disgust the way I do… He sees me as righteous through His Son.

So this blog was intended to share with the blog world not only the meaning of being righteous through Christ as sinners, but more importantly, to show how God ALWAYS shows up right when you need him. He is EVER faithful & amazes me more & more. I pray that all of you will welcome the Holy Spirit into your lives & ask him to open your eyes to every avenue God uses to tell you EXACTLY what you need to hear right when you need it. I’ve learned how important it is to be connected to the local church, some for the benefit of my own spiritual growth & some for the benefit of the growth of the Kingdom. I know that if we weren’t tied into this church, I would have missed SO many opportunities when God has used a fellow Christian to speak a word into my life… sometimes from the platform & sometimes through a simple conversation in the hallway. He uses people, He used situations, He uses His own soft voice… He uses many avenues to let you know exactly what you’ve been searching for.

*Matthew 7:7 – “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.”