Archive | Leukemia RSS feed for this section

The Sovereignty Of God

29 Nov

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.



Good Days & Bad Days

23 Oct

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.



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 :)

22 Sep

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!

11 Sep

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 . 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.


Brian, Vanessa, Keely, Cale & Finley


… & so the decision is made…

12 Aug

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!

3 Aug

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…

13 Jul
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!