Monthly Archive: July 2016

Thank you Jesus for another day…

Today is the first day the Kayleigh has truly seemed like herself since before we disembarked the cruise ship. We know her healing is a process but it certainly is nice to see progress. She even felt good enough to stay with our wonderful sitter so Tim and I could run errands. It was so nice for us to just be together and actually be able to talk freely!

Kayleigh still has some lingering symptoms, particularly balance issues and some involuntary muscle contractions in her arms and face. We hope that as she heals and we maintain the steroid dose that these things will calm down and return to normal. We still very much want to get her off the steroids, but for now, managing the swelling to control the symptoms is a higher priority. Hopefully, by the time we get back to St. Jude, she will be much more stable and we can begin to wean again.

Our week at home is moving by swiftly. My “to do” list is still quite long but I am praying the Lord will help me get all of the important things in order before we leave for St. Jude this Sunday. As the scans near we are also trying to prepare of stage 2 of Kayleigh’s treatment. The hard part is we really won’t have a direction until we see the scans, so right now we are trying to prepare for multiple scenarios.

We believe that we are beginning to see the Lord pointing a certain direction but of course it is the path that seems to have the most obstacles. The good news is we know that if this is God’s plan for Kayleigh then He already has a plan for us to leap every hurdle. We are also praying that if this is not the right path that God will make that clear as well.

So for now here are our prayer requests…
1.) Complete healing this side of heaven!
2.) Symptoms to subside, balance to return and cranial nerves to relax back to normal.
3.) Clear direction for the path to phase 2 and God to clear a path through all obstacles.
4.) Organization of all the Homefront details so the children are ready to start school and our home is in order.

Thank you for continuing to cover us in prayer. We count on each of you more than you can possibly know to help is carry this load. Because of our prayer warriors this load is not too heavy to bear. We love you and are thankful for you.

Galatians 6:2
Share each other’s burdens, and in this way obey the law of Christ.

Until tomorrow,
‘Carrow 💜

Precious big brother

Treasures from a good friend (Cole has treasures too, he just wasn’t feeling picture time)

checking out our school with awesome Miss Amanda!

Happy Monday!

We have had a wonderful day, thank you Jesus for your never ending blessings. Kayleigh had a doctors appointment this morning. We truly love St. Jude and the affiliate office in Huntsville is just an extension of the fabulous care Kayleigh has been receiving all along. The nurses, techs, doctors, child life specialists, and administrative staff are amazingly supportive and so very kind.

It was reassuring today to have Kayleigh checked out thoroughly and for Tim and I to ask some very direct questions. It was even better to get straight answers in return. We know that no one truly knows exactly what is going on inside her head, but having them share their expertise helped calm many of our concerns. It also helped us form a plan to best help Kayleigh manage her symptoms, which as a parent in this situation, is very helpful. Our visit today was quite lengthy but well worth it – we all left feeling better!

Thank you for your continued prayers. Our prayer is that the current symptoms are being brought on by inflammation and swelling from radiation therapy and not any type of progression. And of course, healing this side of heaven!

Until tomorrow,
‘Carrow 💜

Check out this enormous trophy Coach Jojo brought Kayleigh!

Good Morning!

I fell asleep with Kayleigh last night and didn’t get our day into words. What a joy it is to just curl up wth her! Our Sunday was lovely. It was the first day since Kayleigh’s breakdown that we have gone the whole day with no tears. Little by little she is asking her questions and God is graciously giving me answers every time.

Here are some of her precious questions…

KB: Mommy, I’m not afraid of dying any more, but what if I die and Jesus forgets me?
Me: Baby, Jesus doesn’t forget anything he is perfect. He remembers everything and loves you – very much.
KB – not looking convinced
Me: He also has a very special book. It’s called The Lambs Book of Life, once you accept Jesus into your heart Jesus writes your name in His book and it can never be erased.
That did it, knowing Jesus has a record of her calmed the fear.

KB: sometimes I do bad things, what if Jesus stops liking me?
Me: the bible tells us that Jesus never stops liking us, He loves us always.
John 3:16 says For God so loved the world, that’s Kayleigh… For God so loved Kayleigh that he sent his only son, that if she believes in him she will have eternal life.
KB: but sometimes I do bad things
Me: the bible also tells us that nothing can take us out of God’s hand… Not height or depth, not good things or bad things, once we are in His hand we are there for good.

KB: what if you get to heaven before me?
Me: then I will wait for you.
KB: what if I get there before you?
Me: then you wait for me.

How the Lord allows me to hear her heart and answer is amazing. How I am able to keep myself composed and not be a sobbing mess is also amazing. Yet each time she comes to me with a gut wrenching question, God is good to give me peace and bless me with words. With each question we are able to use the bible to squelch fear. With each fear that we squelch, Kayleigh becomes more sure of herself. Like anything, it is a process. And not one I can rush.

This was the passage in one of my devotions today…

Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way (James 1:2-4 MSG).

So don’t try to get out of anything prematurely… Ugh. As we pray diligently for Kayleigh’s healing this side of heaven, God is gracious to continue to grant me peace that He is going to grant our request. Yet as we walk each day I am seeing that He also has a beautiful and intricate plan in place for Kayleigh. While my prayer is for miraculous and immediate healing I must continue to be faithful in the waiting, not trying to get out of this prematurely. God is at work here. In me, in Kayleigh, in our family, in all of you.

So, I will continue to pray for complete healing, this side of heaven, to be completed in His perfect time. I will still be praying for the time to come quickly, but I will be content that God is in control. No matter what the symptoms look like, no matter what the doctors say, no matter what the devil tries to throw in our way, God is good. He is on his throne. He is in control. I trust Him. The end.

These are the verses I was referencing when talking with Kayleigh. I paraphrased them to be kid friendly, but the teaching is still there. Thank you Jesus that your word never returns void.

Revelation 3:5
All who are victorious will be clothed in white. I will never erase their names from the Book of Life, but I will announce before my Father and his angels that they are mine

Romans 8:38-39
38 And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. 39 No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.

Until tomorrow (or tonight),
‘Carrow 💜

Our first full day at home was as low key as we could make it. We are still unpacking, settling in, and trying to find our rhythm. Kayleigh is still more reserved than I would like. Our conversations are often about what happens when you die. It’s so hard to have those conversations. I want her to be talking about kid things, not these heavy things. Thankfully, God is good and He continues to give me the words to comfort Kayleigh.

I am also noticing the progression of symptoms. She is struggling more with balance, her eye is drooping, and her arms and face are drawing up. I think she too is aware of these things which is what is triggering the conversations. Would you please start praying now for clear s and when we go back in a week? Please also pray that the symptoms will subside and Kayleigh will feel more like herself.

It would be easy to start asking God why or to be upset, but I refuse to allow fear to cover a single minute God is good and God plan is perfect. So thankfully Jesus for another beautiful!!

Until tomorrow,
‘Carrow 💜

We are home! Thank you Jesus for traveling mercies. We had lightning and storms come close that threatened our flight, but the Lord did not let that stop us. We were able to reroute around the storm and get to Birmingham. We had multiple traffic jams once we landed in Birmingham but each time God provided an alternate route to get us home without delay. It was a long day of travel but we weathered it pretty well. And nothing is better than being all together and at home!

We are continuing to watch Kayleigh carefully. She is still having headaches, mostly at the incision site which makes sense but some are not which make us a little nervous. Her balance is also off and her right eye is drooping a bit. We are scheduled to see the St. Jude affiliate office in Huntsville Monday morning. We will feel a little better once they have a chance to check her out.

Kayleigh is still struggling with difficult thoughts. Satan is working hard to disrupt her peace using worry, doubt, and general bad thoughts. We are praying often and trying to reiterate to her that God is good, that He has a plan, and His plan is to help Kayleigh, not hurt her. Please pray specifically for peace and good thoughts for Kayleigh both day and night. Please also pray for improving balance and motor skills along with complete healing this side of heaven.

We are looking forward to a weekend of rest. I hope that being home with her family will help perk Kayleigh up. Thank you for your prayers!

Until tomorrow,
‘Carrow 💜

Isaiah 40:31
31 But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.