Are We Good Stewards Of Our Blessing?… Our Blessing Of Children.

Finally, a blog that has nothing to do with leukemia! haha.

This year has been by far the most transforming & pinnacle year for me in many ways. But most dramatically it’s been in the area of spiritual growth & mental maturity. Since the day I gave my life to God, I’ve been praying for these transformations… for the Holy Spirit to guide me, convict me, & change me… mature me, if you will. God has really been speaking to my heart about a certain area, & it’s a pivotal revelation for my family & how we raise our children, so I thought it was worth documenting. It’s been something that God has been slowly making me aware of, something I’ve slowly observed & asked God to guide me on. The issue at hand, raising our children… God’s way! What does that mean? God has really been revealing Himself & His expectations for us as parents. & here is what God has impressed on my heart (this is God’s final revelation/conclusion to me after many, many months of prayer & obedience):

As Christian parents, when our children are born, we have a public display among other Believers & dedicate our new babies to the Lord, promising not only to give them to God, but to TEACH them the ways & love of God. So my question was… is JUST teaching the Bible ALL God has called us to do in order to raise our children His way? It goes MUCH deeper than that folks & it’s not only our responsibility to carry out much more, but it’s our calling as parents & stewardships to the children (blessings!) that God has so generously given us.  

So what does “much deeper” entail? THAT was what I spent so much time consulting God about. & He took me through not only many months of observations, but revelations to follow my observations as well. It started with a book I read called, “The 10 Commandments of Parenting” (excellent book by the way!). I read the book because I’m so concerned with raising my children God’s way! I know what I think is the “right”, “wrong”, & “eh… what do I do about this, God?”, but am I excersizing all of the resources of Godly knowledge? JUST praying is ineffective if the situation is within YOUR control & you choose to just rely on God to bail you out. I don’t know about you all, but for me, what my children ultimately grow up to become is not an area that I’m willing to gamble with. I want ALL of the Godly information & guidance that I can obtain!

 Many times, my kids have been… not misbehaving, but acting in a way that deep down, I’m thinking, “k, I’m not doing my job as a parent to control them”, however, my thoughts are squelched as I see everyone elses kids doing the same thing (& I’m speaking of fellow Christians) & suddenly feel like, “well, everyone elses kids are doing it, so maybe I’m overreacting & being too hard”. It wasn’t until our family was around another family in the church who are EXTREMELY spiritually mature & aware of God’s calling for their lives that I realized this… even as Christians, we seem to be so aware of God’s expectations for us, but sometimes miss the expectations He has for us in raising our children His way & what that means… thinking, “we are Christians, if we do like we are supposed to & teach our children about God, He will guide them & will remain with them.” I believe 100% that this is true. True, but ridiculously short-sighted. The Bible says that if we teach our children the ways of the Lord, they will not depart from Him. BUT, spiritual age is not 18 years old! Spiritual growth is whenever your children have reached that maturity… could be 18… could be 35! All I know is that, I am experiencing a deep relationship with God… but it has taken me lots of mistakes, heartache, & regret in my life to get here… & I don’t say that lightly! I believe that had my parents done what God called them to do as parents, I could have avoided the majority of it! & THAT is what I want for my children.

In observation & walking with God on this issue, I’ve realized that even the church has conformed to the world as far as the expectations of their children &  the responsibility of preparing our children for spiritual maturity AND maturity in the world… to be successful in order to achieve what God has called them to do. Our children are getting to an age of certain expectations. For so long I’ve had this mentality (probably engrained in me by my former hippy mother. haha) to” just let kids be kids”… no responsibility, no expectations, etc. Now, of course, I don’t think your expectations of your 2 yr old should be like the expectations of a 10 yr old, etc., but there should be age-appropriate expectations. Small things communicate your expectations. Such as, we eat dinner together as a family every night (obviously), & Brian & I use that time to chat about our day in between the kids ranting. We used to let the kid’s interruptions in our conversation go undisciplined & serve as an annoyance & a complaint as to how we can never even finish a conversation anymore. Something is wrong with that! Now, we are teaching our children respect! They can talk to each other while Brian & I are finishing our conversation, but interrupting us is a complete disrespect. These things that are just an “annoyance” within our 4 walls, prove to be embarrassing when you are among a group of people & they arise! & this weekend, we took the kids trick or treating, & the kids were running through peoples grass’. NO! Unexceptable! “Sidewalk, please!” It’s these small things that we think doesn’t matter…. cause they’re just that, small… that communicate to our children our expectations of them.

Keely is the oldest of 3. We aren’t the Dougar’s by any means, but we are a larger family. We are teaching Keely to instead of constantly being at war with her siblings, to look after them, to be their role model. This doesn’t mean that she takes on the responsibility of their mother, but that she understands that they are her flesh & blood & we take care of one another! By doing this, not only have we created an atmosphere where she is always looking out for the boys, even when mom is in the kitchen, but a sense of self-esteem & self confidence in being the oldest sibling.

I don’t ever want to squelch the individual personalities of my children… I want to foster the originality that God has given them while setting them up for success… God’s way! We live as an example for our children… living as we want them to live, but along with that comes giving them the discipline & structure they need in order to make obeying God & having a fruitful life, without going through so much “junk” to get there, so much more natural. & it doesn’t matter if  other parents let their child do it… it’s our job as parents to carry out what God expects of us, whether we’re on the bandwagon or not!

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!

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!

Where I go, you go

So this is a Moby wrap. & it might just be one of THE coolest baby products I’ve ever owned. I’m seriously in love with it…. & from the looks of it, so is Mr. Finley-Foo. So comfy, for both him & I!

I guess you can’t really get the full effect of this contraption, but it is just one VERY long piece of super comfy fabric that comes with a book on how to use it in all different sorts of ways to accommodate a baby from newborn- a yr. old. After 3 kids, we’ve probably spent hundreds of dollars on carriers & wraps, etc., but this is by far the best! It’s so supportive on my back & especially for Finley. It’s almost genius how well he’s supported by just a piece of cotton material. Every mother needs one of these. I think at least a dozen people stopped me while I was out to ask me about it. This will forever be my baby shower gift for every expecting mother! Thanks Tabitha for turning me to the hippy side & convincing me that this was so worth the investment… even if I did have to travel all over Chapel Hill to find the hippy joint that sells these things. I was surprised to discover that I could’ve spent HOURS in this little boutique! It was full of all kinds of neat stuff for mommies & babies. I will definitely be returning!

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.”