Monthly Archive: October 2016

We are home! How thankful we are to be home and in our own bed tonight. It was a long day traveling home, getting started with home health care and catching the big kids up on what is going on.

I’m afraid tonight I’m exhausted so this will be a short post. Please pray that Kayleigh settles in to being home. She had a round of vomiting tonight but seems to be feeling a bit better. Our prayer is that tomorrow she can recoup and feel better.

I will try to give you all a better update tomorrow as to how she is and where we are when I’m not quite so tired. Just know that we need you to keep praying for her miracle!

Psalm 107:19-21
19 “Lord, help!” they cried in their trouble, and he saved them from their distress. 20 He sent out his word and healed them, snatching them from the door of death. 21 Let them praise the Lord for his great love and for the wonderful things he has done for them.

Psalm 30:2-3
2 O Lord my God, I cried to you for help, and you restored my health. 3 You brought me up from the grave, O Lord. You kept me from falling into the pit of death.

Until tomorrow,
‘Carrow💜

Hugs good-bye with Mike & Anna

Posing with Cole’s art

Settling in at home

Today has been a good day. I do not have any major improvements to report but Kayleigh has stayed steady – so, for today that is a win.

She had a port placed this morning which will allow her medical team to have way access to blood for labs and give her meds easily. It will also means no more IV’s so she’s pretty happy about that. She has had some minor discomfort from the surgery but it has been easily managed with medicine. As always, she is a trooper and handled it gracefully.

She was so funny before surgery. Due to anesthesia she wasn’t allowed to have breakfast. She told daddy to be waiting in the recovery room with bacon and sausage. Of course daddy obeyed. And what do you think her first question was after surgery? Where’s my bacon??? The nurses died laughing.

We also had the pleasure of a visit from Anna! We all sat around and watched movies, just enjoying the easy friendship of people that understand. As you continue to pray for Kayleigh please continue to remember Anna. She just had her third round of chemo. Now we pray for her to be protected from germs and any complications as her infection fighting ability drops.

As we are packing up our room here in Memphis we feel like we are as prepared as we can be to come home. I’ve asked every question I can think of. We have multiple pieces of equipment to bring home to help us. Home health is set up to visit so we have back up. Please just pray that the transition home goes smoothly. We very much hope to arrive home tomorrow.

I know many of you that live local may be tempted to stop by unannounced. While we love you all very much we kindly ask that you not do that. Rest is going to be one of the most important things for Kayleigh. We also must be very careful about protecting her from germs. Even the smallest thing that our bodies can handle could be a big problem for Kayleigh.

Finally, here are my verses for tonight. They were posted on the page by a friend and just speak to me.

Lamentations 3:20-26
20 I will never forget this awful time, as I grieve over my loss. 21 Yet I still dare to hope when I remember this: 22 The faithful love of the Lord never ends! His mercies never cease. 23 Great is his faithfulness; his mercies begin afresh each morning. 24 I say to myself, “The Lord is my inheritance; therefore, I will hope in him!” 25 The Lord is good to those who depend on him, to those who search for him. 26 So it is good to wait quietly for salvation from the Lord.

I’m posting earlier than my usual midnight post since I know many of you are waiting and have been praying earnestly. Kayleigh has had a very busy day. We’ve met with physical therapy and occupational therapy three times today working to get everything we need to come home. Let me tell you, those ladies went above and beyond to take care of us. We are so thankful!

Kayleigh also had a speech and swallowing consult. They were very helpful about how to help Kayleigh keep on eating and drinking the things that she loves. As things progress with this disease eating become hazardous, we want to avoid that as long as possible. Thankfully, we can call any time to get help and ask questions.

We also met with the surgical nurse practitioner. Kayleigh is going to have a port placed tomorrow to make IV access much easier at home. Since the only places IV’s work well on Kayleigh are her little hands, they get overused and abused. The port will make it easier on her as well as any home health staff.

Kayleigh also had an EKG where we saw our favorite EKG guy. He always makes her smile. And she met with Child Life too and did some fun crafts.

Finally, we headed down to MRI. Today was busy so they were running way behind. As always, Kayleigh was a champ. She watched her movie and held perfectly still. I sat with her and read my bible and prayed. I prayed hard for miraculous healing, but none of the verses I read were confirming that. I just kept reading about trust, over and over – and waiting patiently on the Lord.

Somewhere in that 90 minutes my heart found peace. Not because I had a revelation from God, not because I felt that He was going to heal Kayleigh right now, but because my heart recognized that no matter what, God’s plan is perfect. Our job isn’t to know what God is going to do. It isn’t for me to know right now if He is going to grant healing on this side of heaven or the other. It’s my job to wait patiently on the Lord. To wait and see what He is going to do. How He is going to answer our prayers. I told you I knew God was going to show up today, and He did. It wasn’t bright and flashy, it was still and quiet. It was perfect.

Our wonderful Doctor stayed to talk with us after the scan even thought it was well after hours. He confirmed our worst fears – what we were expecting, that the tumor has indeed progressed. We discussed options and future plans. We have a meeting tomorrow with more of Kayleigh’s team. We have most of the plan in place. Once we have the opportunity to sit down and discuss the plan with Grace and Cole we will share more. We just don’t want anyone inadvertently alarming them with too much information or unintentional misinformation. We have spoken with them about what Kayleigh is facing and they know what to expect, we just want to tell them everything ourselves and in person.

For now we need our prayer warriors to stay on the warpath. Continuing to pray. Continuing to ask God for a miracle. As I lay in this hospital bed with my precious girl I am thankful for another wonderful day. Just because the news wasn’t good doesn’t change the fact that we had a good day. So much of our lives can be changed by the way we choose to look at things. While we cannot change the circumstance we can change how we respond. No one would blame us for yelling, screaming, and throwing in the towel – but that is not how we are choosing to react. We are choosing to trust, no matter the outcome.

Our God is so good. These are my verses for you tonight…

Job 2:10
10 But Job replied, “You talk like a foolish woman. Should we accept only good things from the hand of God and never anything bad?” So in all this, Job said nothing wrong.

Job’s wife was attempting to stir up despair, yet Job would not listen. He chose to trust God. And God honored Job for his faithfulness.

Psalm 27:14
“Wait for the Lord;
Be strong, and let your heart take courage;
Yes, wait for the Lord.”

No matter how things look, we are going to wait patiently on the Lord. All will be made right in His perfect timing.

Until tomorrow,
‘Carrow💜

What an amazing night. Tim, Kayleigh and I were able to participate in the prayer vigil via FaceTime. I cannot begin to tell you just how moving that service was. To see how full the park was. To worship and pray with the music. To hear the prayers… thank you prayer warriors.

And then, the pictures of so many of you praying from all over. The texts. The messages. We simply do not have the words to express just how thankful we are to be surrounded and supported by such an army. We needed you and you showed up in ways we cannot believe. Thank you doesn’t convey what is in our hearts but it’s a start.

Tim and I have been working with the Quality of Life team, physical therapy, occupational therapy, and her doctors to figure out just how we can come home and take care of our girl. We want her comfortable and as normal as possible. And we want to be able to care for her ourselves. Thankfully, everyone here loves Kayleigh and wants the same thing for her. The way she endears herself to everyone around her is amazing. She is magnetic, drawing everyone to herself, even in this state. And as I watch people be drawn to our precious girl, I in turn get to see those same people being drawn to Jesus. And that’s why I never ask God “why”. I can see so many of the reasons why… He is using Kayleigh to draw people to himself. The impact of this 7 year old girl is more than most of us will have in our lifetime. She is the catalyst for change. Positive change. Eternal change. Praise God for allowing us to serve Him.

I had a nice long talk with the Lord today. So much unknown, so much grief, even knowing that Kayleigh is being used so mightily doesn’t make what we see any easier. It doesn’t make the thought of losing her ok. I finally settled in today – no matter how God chooses to answer my prayers, that I will still CHOOSE to praise Him. Choose to trust Him, choose to believe that His ways are better than my own. But I also told him that I would still be asking, everyday, without ceasing, for this miracle. And that I would be asking my friends, family, and prayer warriors to do the same.

So friends, tomorrow is a big day. Kayleigh has her MRI at 2:45. With her symptoms and the CT scan, the medical team is expecting the worst. I, however, am expecting God to show up. I don’t know how, but I know I will see Him tomorrow in some way, shape, form, or fashion. I don’t know what tomorrow’s scans will hold, but I know who is holding them – and He’s the one with all the answers anyway.

Please keep covering us all with your prayers. They are what hold us together when things are rough. We are so thankful for each of you. Treasure your children. Make time to teach them, time to love them. Love them enough to disincline them when they need it. No one is promised another day. Whatever you do, don’t take a moment you have with them for granted.

Psalm 8:2
You have taught children and infants to tell of your strength, silencing your enemies and all who oppose you.

Deuteronomy 6:7
Repeat them again and again to your children. Talk about them when you are at home and when you are on the road, when you are going to bed and when you are getting up.

Psalm 127:3-5
3 Children are a gift from the Lord; they are a reward from him. 4 Children born to a young man are like arrows in a warrior’s hands. 5 How joyful is the man whose quiver is full of them! He will not be put to shame when he confronts his accusers at the city gates.

Until tomorrow,
‘Carrow 💜

This is just one side of the park…

How precious are the prayers of children?

Volleyball girls praying tonight too

Hello friends,

I’m posting earlier because I want you to have the most up to date info before the prayer vigil tonight. Today is still a good day because our beautiful girl is still her precious self. That being said the benefits of the steroids appear to have been short lived. Today her motor skills have begun slipping again. As we have seen with Kayleigh, that is where it starts. She is also sleepier than she was yesterday.

We know out God is good and He is able. We certainly need Him in all his splendor to show up to turn the tide.

We love you all,
‘Carrow💜