Monthly Archive: August 2016

I am so happy to report that today was a FANTASTIC day!

After last night’s battle for Kayleigh’s emotional and spiritual well being I wasn’t sure how she would be today but she woke up in a great mood. She has enjoyed being at home and playing with her friends. She felt so good that she didn’t mind me leaving her at home with Tim to go grocery shopping without her! That made for a great day for me too. I enjoyed a little time away and we finally have food in the pantry that is good for Kayleigh. That’s a win – win.

The entire atmosphere of our house is just lighter today. As I read through all of the comments on last nights post I could see where God has had people praying for Kayleigh around the clock. Thank you for standing with us, in prayer, as a shield of protection for Kayleigh. She is a completely different child today. She still had a few questions this evening but none of them were morbid and none made her cry. More like things she was just wondering about. Thank you Jesus for answered prayers!

As our crazy busy schedule revs up beginning tomorrow morning we would greatly appreciate your continued prayers. Prayers that we will be more aware of Kayleigh’s mental state and not allow things to get so serious again. Prayers that her heart and mind will be protected from morbid thoughts. Prayers that she will continue to feel safe, loved and protected.

Tomorrow morning is going to be a beautiful moment in our family’s life. All three of our children have decided they are ready to follow Jesus in believers baptism. As a mother, nothing could bring me more joy than knowing I have eternity in front of me with all of my babies. If you find yourself wanting to join the celebration you are welcome to watch via livestream at 10:45 CST. I will try to post the link below but you may need to go to www.livestream.com and set up an account. Then search for Central Baptist Decatur – the icon is a blue circle with a white C.

Thank you for continuing to walk with us down this path. We love you and are so very thankful for you.

Until tomorrow,
‘Carrow💜

Take a look at Central Baptist Church’s events on Livestream http://livestream.com/cbcdecaturlive

Hello Prayer Warriors, happy Friday! We had a much needed low key day here at the McClendon house. We’ve spent the last five days running non-stop and next week is going to be just as crazy; but today and tomorrow we get to just be home. Thank you Jesus for small blessings!

Today was an emotionally difficult day for Kayleigh Bug. She was much quieter than usual and a little withdrawn. She also would not allow me out of arms reach. By bedtime she was in tears, consumed with grief and fear. Oh how it hurts my heart to see her struggle so. It consumes her so completely that she struggles to verbalize her fears – like if she speaks them out loud they might actually happen. And the core fears are always the same – the fear of me dying and her not having me, the fear of her dying and being alone in heaven, the fear of me or finding her in heaven, the fear of Jesus forgetting her.

As always God is good to give me words of peace for Kayleigh. Tonight’s words were actually given to me yesterday by a doctor and beautiful woman and I have been speaking them over Kayleigh, out loud, all day. You are safe, you are loved, you are protected. I even changed it to I am safe, I am loved, I am protected and had her repeat it after me multiple times through the day. You should see how her eyes light up when she says she is safe, loved and protected. It is beautiful.

Tonight when she was afraid to verbalize her fears I began repeating those three things over and over. And every time her fears would ease, degree by degree. As we talked through each fear and I consistently reminded her that she was safe, loved and protected, I watched her shed the grief and fear like an old shirt. As I finally tucked her in her eyes were bright again and full of laughter. So much like her old self. I think for the first time Kayleigh was able to get through her entire list of fears, out loud.

I know that tomorrow will be a new day and a new battle for Kayleigh’s emotional well being but I finally feel like we have a battle plan. A proactive approach, building her up, and filling her mind with these three special things – you are safe, you are loved, you are protected. And not just safe, loved & protected by her parents, but by God Almighty, maker of heaven and earth.

Before she drifted off to sleep I asked Kayleigh what to post tonight and she said to tell you how to not be afraid. So here it goes…

1.) Make sure you’ve got Jesus in your heart – that’s where peace and hope come from.
2.) Stop and remind yourself the YOU are safe, YOU are loved, YOU are protected – because when you have Jesus you have access to God Almighty and He loves you and is watching over you.
3.) Verbalize your fears – fears grow huge in our heads and our imaginations can run rampant. But if you speak your fears to God they lose power. Fears don’t have to be a part of you, you can choose to set them down and at the foot of the cross is where they belong. Is it easy, no. If you set them down will they come back? Maybe. But that just means you set them down again. Keep setting them at the foot of the cross until they return no more.
4.) Remember even when things are looking really bad – you are only seeing a single piece of a 1000 piece puzzle. One of these days you’ll be able to look back and see just what God was doing in the background and how He crafted every, single, piece perfectly.

Joshua 1:9
This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”

Psalm 34:4-7
4 I prayed to the Lord, and he answered me. He freed me from all my fears. 5 Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces. 6 In my desperation I prayed, and the Lord listened; he saved me from all my troubles. 7 For the angel of the Lord is a guard; he surrounds and defends all who fear him.

Until tomorrow –
‘Carrow 💜

You are safe, you are loved, you are protected.

Oh want a beautiful Thursday!

It was so nice to sleep on our own beds last night. There is just something about being at home that allows you to rest better. It also helps to be well rested for busy days like today! It’s also a beautiful thing to wake up to pictures of a new baby on your phone. My college roommate welcomed a precious little girl into the world today. I cannot wait to get my hands on her!!

Being in this little lull, waiting for direction, the Lord is blessing us with some time to get things in order that we have been pushing off. One of the things I have been wanting to do since Kayleigh’s diagnosis was put together a clean eating plan for her and add the proper supplements to help her body work and heal at its highest potential. I can’t help but think that if her body is running better that everything should work better as well. I had been given the name of a doctor that specializes in that kind of thing right at the time of Kayleigh’s diagnosis but I didn’t have time to look in to it until last week. The doctor was very kind and went out of her way to get us on her schedule as quickly as possible. Today was that appointment and Kayleigh was a trooper.

Even without knowing all of Kayleigh’s background she was able to pinpoint so many things about Kayleigh and was spot on. She gave us good advise that made sense and is doable, all of which I count as a blessing. Some of her suggestions will be quite a lifestyle change for our family, but honestly, it’s things that I already do for myself like no processed foods and limiting sugar. Things I know make me feel better and make my body run better. And yes, I know changing her diet isn’t the magical cure for DIPG, it is however a step in the right direction to balance her little body and give it the tools it needs to fight off this nasty tumor.

While I was with Kayleigh talking about food, Tim was with Cole at the pediatric surgeon’s office talking about the lump on his neck. Tim only had good things to say about the visit. The doctor says it is something we should address but that it is ok for us to get this first part of Kayleigh’s trial selection out of the way and then schedule the appointment at our convenience. Cole isn’t to excited about the word “incision”, actually he does it like it at all. But it was really cool to watch Kayleigh explain to Cole about incisions and how they don’t hurt since you are asleep. Which led to how you get put to sleep, which led to IV’s, and that was a hysterical conversation. When Cole asked if he would have to swallow the IV I though Kayleigh would loose it she was laughing so hard. After laughing at him for a little bit and telling him all the places he could possibly get an IV she finally calmed his fears by telling him it wasn’t bad, just a pinch, and then you wouldn’t know anything. She even showed him her stitches so he would know what they look like and not be afraid. That’s a big deal for her!

After Kayleigh’s appointments we swung by my grandparents to visit. It was wonderful. My aunt and little 2nd cousin joined us as well and we had a great afternoon. We made it home just in time for big sis, Grace’s, 6th grade orientation and softball practice.

And then, if that wasn’t enough for a wonderful day, we had a sweet young friend call to tell us that she asked Jesus into her heart because she wanted to be like Kayleigh. I can’t tell you how wonderful it was to get to tell my sweet girl about that. So many days I tell
Kayleigh she is making a difference and every day she says no she isn’t, she can’t, she’s just a kid. But today, she couldn’t argue, her friend called her out by name saying she made a difference. And that gave my baby happy tears. I’ll take years of joy any day, those do a mommy’s heart good!

It’s a wonderful day when I get to post such a positive message. God has been oh so good. My devotion today was about God’s unconditional love. How wonderful is it to know that we don’t have to do anything, be anything, or change anything for God to love us? That he loves is just the way we are? Today I have felt that love being poured out on me. God knew how my heart was battered and He sent wave after wave of his unconditional love. I certainly didn’t do anything to warrant it, but it came. It came as prayers from friends and strangers alike. It came as encouraging words from friends. It came as good news. It came as hugs from friends. It just came.

1 John 3:1
See how very much our Father loves us, for he calls us his children, and that is what we are! But the people who belong to this world don’t recognize that we are God’s children because they don’t know him.

Until tomorrow,
‘Carrow💜

My girls, my Granny & sweet Nora

My Granda & Kayleigh

Granda & Grace

Grace & Nora

Nora sharing kisses 💜

Happy Wednesday night Prayer Warriors. Today has been a good day! I want to start tonight by just saying that you. The amazing support you have shown us in you kind comments, messages, calls and texts has been overwhelming and wonderful. You cannot know how much we rely on your prayers. God is so good to encourage us through all of you.

Our last St. Jude doctor visit today was just to touch base with the neurosurgeon group at St. Jude. Thankfully, we do not need their services right now, we just wanted to make sure we knew them and knew how to call if we have an emergency arise. I’m discovering the neuro community is fairly small. Our neurosurgeon today is friends with our neurosurgeon in Miami – how cool is that?

Once we finished up we jumped in the car and headed home. Some wonderful people planned a fundraiser for Kayleigh tonight at Texas Roadhouse and we were so excited to be able to attend. We were greeted by a huge group of her softball buddies in uniform, coaches, friends, family and even Anna & Elsa made the trip in. Kayleigh had a wonderful time and so did the rest of us. The support she continues to receive never ceases to amaze us!

After our wonderful party we finally made it home. Just the five of us under one roof is a blessing I don’t take for granted now. I wish I could say that we are all now safely tucked in bed but I can’t… The kids and I are all tucked in but Tim has driven himself to the emergency room to get the barb of a fishing lure removed from his shin. All I can do is laugh. If I wasn’t living this story I would probably think it was made up!

Our wonderful neighbor, who is a nurse, did come over to try and remove it. Unfortunately, when I cut the lure it did not leave a great deal of metal sticking out. Now, in my defense, the lure was sticking out of the mesh of a fishing bag – so I was cutting it loose, upside down, with an entire fishing bag in the way. I’m pretty sure Tim’s lucky I only cut the lure. Anyway, the stubby lure now protruding from Tim’s shin is too short to push back through but in to deep to just yank out. Or at least Tim says that’s not a good idea. I did offer to give it a good yank but he declined my services. So, he is on his way to Decatur to have a professional get the thing out and hopefully give him a tetanus shot – because the last thing we need is him to contract something from a fishing lure!!

Now, enough comic relief at Tim’s expense, back to Kayleigh. On the phase 2 front we are still waiting. Packets have been sent off to the trials we are interested in and should be arriving to their destinations by Tomorrow or Friday. Once those places have had the opportunity to look at her scans they will let us know if Kayleigh is a candidate.

Please pray with us that God will make his path clear and that we will make good decisions for Kayleigh. Some of the options are quite a bit more risky than others but certainly offer the potential for greater rewards. Our prayer is that she is eligible and that God will clear the path for her to enroll and that God will use that to heal her. But as we all know, God rarely answers our prayers as we anticipate, so I am going to do my best to wait patiently for whatever God has in store for us.

Isaiah 40:31
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.

Until tomorrow my friends,
‘Carrow💜

Good morning friends. I’m sorry for not posting last night. I started writing but the words just wouldn’t flow. I had so much to say and so many things God was doing in me that I must have needed time for those things to settle and my thoughts to calm. But thankfully, as scripture says, joy comes with the morning (Ps 30:5) and today is a new day.

Yesterday was… I don’t know. I need a thesaurus for a word that means “a good day because God gave us a new one, a hard day because the news was difficult, a day of hope because we remember that God is in control, a learning day because God is teaching me so much”. I’m not sure what that word is but that was yesterday.

Our main appointment was with Kayleigh’s radiation oncologist. He is a brilliant man and we are thankful for how he has helped us. He is very straightforward and answers our questions clearly which is greatly appreciated. He checked Kayleigh out and let her go play while we talked about the scans (if you have not read my earlier post the scans did not show any shrinking). He answered some of our questions and gave us good advise about how to make choices for the next phase. He confirmed that any external beam re-radiation is not an option for Kayleigh. As we were finishing up he said “she’s such a beautiful girl, it makes us sad, I’m sorry”.

I’m sorry… Those words hung with me all day. We’ve only been on this path 2.5 months and yet we have already reached the end of what medicine can do on that front. Our prayer is for God to shut doors and make his path clear and as I write this I am seeing how God is indeed answering my prayers. One door closed. What I wasn’t prepared for was how my heart would feel as Kayleigh’s options are taken away.

I wrestled yesterday. My faith held fast to what I knew – God is good, His plan is perfect, His timing is perfect, He loves Kayleigh more than I ever could. But if I am honest, my heart still stung. Not from doubt but from the unexpected way God answered my prayer. Do I trust Him? Completely. But I would have felt better if I still had numerous treatment options for Kayleigh. Hmmm… Complete trust can’t have any “buts”.

Thankfully, we have a good, good Father and He sent me a gentle reminder to be patient and listen in the devotion I read after that radiation appointment. We came here on a mission to find the next step for Kayleigh on the path to healing. Seeing her scans Monday and talking to the doctors Monday & Tuesday made that feel like the most important thing in the world and we needed to get the answer immediately. But God reminded me that the most important thing is to listen to Him. Patiently listen to him – not rush.

I could stop talking right here and you all would be fine. But since I’ve chosen to be completely honest on this forum I’m going to tell you that my devotion and prayer time helped but my heart still struggled. And Kayleigh did too. She had worries and would cry on and off all afternoon but not tell me why. Finally at bed time I got answers from her. Her biggest fear now is separation from me. Fear that I might leave her for some reason. Fear that if I die before her she won’t have a mommy any more, fear that if she dies first that she will go to heaven and not know where to go and have no mommy there. Oh how that hurts my heart. I can promise her that I will never leave her here on this earth but I cannot help her past the fears of death. I just keep praying that God will give me the right words to soothe her fears and that her new relationship with Jesus will grow so that she trusts Him and He puts her heart at ease.

Finally, as I tucked Kayleigh in and read my bedtime devotion the Lord met me where I was again with John 16:33. Reminding me that it doesn’t matter what it looks like, He has over come the world. And that really, the whole point is to get to the point where the situation is completely impossible so that “victory is absurdly impossible to everyone, except God.”

I can tell you that the thought of reaching “absurdly impossible” with my precious baby girl is the most scary thing I have ever faced. My prayer daily is that I will remain faithful and that my trust will not be shaken. That God will continue to use Kayleigh’s story to change hearts and draw people closer to Jesus. And that I will be able to pour into Kayleigh the truths that she needs to build her relationship with Jesus.

Please keep praying with us for healing this side of heaven, but please add that we will have the strength we need every moment of every day to continue to fight and stand strong for the Lord.

Until tonight,
‘Carrow 💜

John 16:33
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”

I’m including a picture of both devotions so you can see just how awesome God is and how He so graciously brought me the words that I needed to hear.

Morning devotion

Bedtime devotion

Puppy therapy – because dogs make everything better 💜💜💜