Monthly Archive: August 2016

Happy Tuesday friends. Thank you for your persistent prayers on Kayleigh’s behalf. She woke up this morning with no headache and went all day with only a tiny one peeking through around dinner time. But even that little, tiny headache was very mild and extremely brief. That is a great, big, beautiful, thank you Jesus!!!

Kayleigh went to school all day and even felt up to a short Walmart run after school. She even walked all through Walmart on her own! I know we have so many other things going on but these little things are huge blessings for us today. This mama was blessed with a whole day to catch up and run errands – alone – it was glorious!

We are still waiting to hear from the trial in England. So far we have had no word from them to indicate anything at this point. I am hopeful that we will hear from them to at least give us feed back, but in the meanwhile, we are working to get a plan underway. Tentatively, we are planning to return to Memphis to enroll in their clinical trial. If all goes according to plan we will be headed to Memphis on Sunday and staying for at least a month.

Because of the situation we have decided to take Grace and Cole with us on this adventure so we can keep our family together and enjoy every minute possible as a family. We would very much appreciate your prayers as we work our lodging, travel, school, and just all the logistics in general. I can tell you I am not looking forward to all five of us living in one room for the next month somI am praying now for the Lord to grant me patience!

I am over joyed to post such positive news tonight. Please continue to light up heaven with your prayers for Kayleigh. We know from experience when we start praising God for His amazing blessings, that the Devil gets on the war path. You are making a difference every day with your prayers and we are so thankful. Continue to pray for no headaches, healing this side of heaven, and that our family will be salt and light no matter where we are and that Satan has no power here.

Psalm 125:1-2
1Those who trust in the Lord are as secure as Mount Zion; they will not be defeated but will endure forever. 2 Just as the mountains surround Jerusalem, so the Lord surrounds his people, both now and forever.

Until tomorrow,
‘Carrow💜

It’s been a good day but a hard day at our house. Kayleigh woke up headache free this morning which was such a blessing. Everyone got dressed and ready for the day but by the time we got in the car and made it to school Kayleigh’s head was hurting badly. It seems light, sound & movement trigger the headache and once it starts it just continues to linger.

Today she was only headache free for a couple of hours all day. The rest of the day she had to stay seated or laying down where it was quiet and semi-dark. One good thing is that most of the time the headache isn’t terribly severe so she isn’t getting sick.

What I hate most is what the headaches make her think about. Especially 3 days of headaches. She’s a smart cookie, her thoughts are much like mine. “Is the tumor growing?” being her number one fear. But that fear leads to darker thoughts and more hard conversations. One of her fears is that if she gets sicker and needs more care, that I will think she is too much trouble and just leave. She worries that if she is too much to take care of that I won’t love her. And then she is worried about death. Worried about something happening to me that takes me away from her and worried that she might go first and not be with me. Ugh. She is too young to have to think like this!

But thankfully God continues to give me the words to soothe her. I reminded her that she can never be too much trouble because God will never give me too much to take care of- because as long as I am following Him, HE will be the one doing the carrying, and He promises me joy and new mercies each morning. We spent more time talking about death but finally I looked at her and just told her there was no reason to cry because today was not her day. God only promises us the day we are in so we will live that day to the fullest and let tomorrow take care of itself. I also told her that I am quite certain that God is not done with her yet. She and I have a lot more work to do telling people about the love, hope, grace and mercy of God. She can’t be done yet! Amazingly it was that, reminding her of her purpose that calmed her.

That really goes for all of us. If we are walking according to God’s purpose for our lives nothing else matters. It’s amazing just how simple that truly is. Notice I didn’t say easy, because I can promise it’s not easy, but my life is much simpler now. We still have struggles but it’s just different now. I see the struggles now as opportunities. Opportunities to trust God and watch Him work and opportunities to share with all of you what He is doing.

Psalm 46:10
“Be still, and know that I am God! I will be honored by every nation. I will be honored throughout the world.”

Until tomorrow,
‘Carrow💜

Hello Prayer Warriors. I wish I could report a better day with no headaches but I cannot. Kayleigh has had a fairly persistent headache on and off (mostly on) all day. She has asked me multiple times why her head keeps hurting and I just don’t have the answer. Of course my greatest fear is that the tumor is already progressing again. I know it could be other things but progression is the giant white elephant in the room.

I am continuing to remind myself that God is not surprised by any of this. That while I am only able to see this one moment in time, and I am struggling to hand all my worries over to Him each day, He is seated on His throne looking at the entire picture. He is aligning every little detail perfectly for His plan to be accomplished. God is allowing our family to experience Him in new, intimate ways each day. He is growing our faith, building our relationships with Him and each other, He is teaching us, and He is loving us. No other experience could have drawn us closer to Him.

So, I find myself in this strange place. A place where I am seeing God work in amazing ways. A place where I trust God more than I ever have. A place where I have true communication with God the Father and it is beautiful. And yet even then, I struggle with worry. It is a constant battle within myself to choose to trust. To regularly stop, take inventory of my fears, and deliberately choose to lay those fears at the cross. Just because my relationship with Jesus is better than its ever been doesn’t mean the path gets any easier. It just means it takes me less time to realize what is wrong and give it over to God.

So tonight as I go to bed I still have to battle the fear of progression, the fear of choosing the right treatment plan for Kayleigh, and the fear that I am going to have to watch my precious baby suffer from these nasty side effects. Those are my fears. And God knows them, and He knows the all answers. So tonight I choose to lay those at the feet of Jesus plainly and openly. I am choosing to trust in the Lord and His inherent goodness. Tomorrow morning I will wake and have to do the same thing again and that is ok. Because I know God will continue to bless our family as long as we continue to be obedient to what He has called us to do.

Psalm 55:22
Give your burdens to the Lord, and he will take care of you. He will not permit the godly to slip and fall.

Matthew 11:28-30
28 Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. 29 Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. 30 For my yoke is easy to bear, and the burden I give you is light.”

Please continue to pray with us for complete healing, a plan, and rest.

Until tomorrow,
‘Carrow💜

Happy Saturday friends!

We’ve had another low key day at our house. It was much needed after the busy week last week. Everyone was tired, especially Kayleigh. She has also started having headaches again in the morning. Then today she had a headache on and off all day. They have not been as severe as what she has felt with in the past but it is still disconcerting. We have not been able to wean steroids at all and are even beginning to think about increasing the dose if the headaches persists.

We are still patiently waiting for the Lord to direct us to phase 2. Patience is often difficult – especially when I see Kayleigh not feeling great. It makes me feel like I need to DO something. That’s the “fixer” in me. I just want to make it all better. Of course there is no way for me to fix any of this, so I am learning to be patient and wait, trusting that the Lord is going to direct us to His plan in His time.

We would very much appreciate you prayers for Kayleigh’s headaches to subside. They are usually worse in the mornings so when you wake up tomorrow, if you think of her, pray for no headache! We would also REALLY like to get her off steroids. I am quite certain that is going to take a miracle, so please pray with us for one. Kayleigh is particularly upset because her face is so puffy. I keep reminding her that it is just the medicine and that all will return to normal soon – prayers for peace would be greatly appreciated!

Until tomorrow,
‘Carrow 💜

Psalm 27:13-14

13 Yet I am confident I will see the Lord’s goodness while I am here in the land of the living. 14 Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.

It’s the weekend! Kayleigh had her second full day of school today and she did fantastic! She wasn’t nearly as tired as she was the first day and was in the best mood when I picked her up. I really think getting to be with her friends is some of the best medicine!

Thank you for you prayers for direction. We did receive one answer today. Sloan Memorial Kettering has said that Kayleigh is not a candidate for their program due to the tumor’s progression, hemorrhaging and extensive necrosis. Wow. Even as I type those words my stomach clenches a little. God is certainly answering our prayers for clearly closed doors but as usual He is answering in a way I did not expect.

Please keep on praying with us for more answers and the right doors to open. We know God is good and that he is on His throne. We know he has a plan for us event though we cannot see it. So keep on praying for remarkable. Remarkable healing, remarkable answers, remarkable peace.

God has brought this verse to me twice today from different sources.

Jeremiah 33:3
Ask me and I will tell you remarkable secrets you do not know about things to come.

How amazing and perfectly timed. God even says He will tell me remarkable
secrets. I do love remarkable!

Until tomorrow,
‘Carrow💜