Monthly Archive: July 2016

Greetings from the sea! Our second day aboard ship was beautiful. Blue sunny skies and plenty of free time. We slept late, had a leisurely lunch, made pictures with characters and princesses, rode the water coaster, watched a show and watched the late movie! I’m quite sure we will all sleep well tonight.

Kayleigh had a full and fun day. Because the headaches have been breaking through, our days are so full and she has so little down time we decided to do the full .5mg steroid dose both this morning and again this evening. That really isn’t what we wanted but we decided quality time and no headaches out weighed the weaning. Would you please pray with us that we will be able to try stepping down again?

Much of this is trial and error to find what works best for Kayleigh. We are so thankful that all of you are praying with us. We are learning a little more each day about how to help her. And we can feel God giving us peace as we make decisions. The headaches do make me a bit uneasy; but, as long as I stop, and remind myself who is in charge, peace is quickly restored.

It also helps me to make our prayer requests known each day.
1.) Complete healing this side of heaven.
2.) No headaches!
3.) Safety as we travel.

Tonight I was reading in Mark chapter 1. The following verses were soothing to my soul. No, we aren’t dealing with leprosy, but we do have our own demons to deal with. My prayer for Kayleigh tonight it that Jesus will be moved with compassion and that he will reach out, touch her, and heal her.

Mark 1:40-42
40 A man with leprosy came and knelt in front of Jesus, begging to be healed. “If you are willing, you can heal me and make me clean,” he said.
41 Moved with compassion, Jesus reached out and touched him. “I am willing,” he said. “Be healed!” 42 Instantly the leprosy disappeared, and the man was healed.

Until tomorrow!
‘Carrow 💜

What a fabulous and amazing day! We started this morning by sleeping In a little before catching our shuttle to the ship. After getting in so lay last night even the kids slept until after 9:00! After gathering our things and getting on the bus Kayleigh received a special phone call, Willie Robertson from Duck Dynasty call to wish her well. She was absolutely thrilled. She also said they were a crazy bunch. Given our family she felt right at home :).

We are now happily on board the beautiful Disney Fantasy and on our way to our first stop, Cozumel, Mexico. We’ve had pictures made with Tiana and Ariel, booked our shore excursions, had dinner at the royal Court, watched an awesome show, visited the kids club, watched a movie poolside and unpacked our things to stay a while. Whew!

Tomorrow we will be at sea and enjoying the wonderful shipboard activities. The kids are already making plans to hang out in the kids club which means we will get to be grown-ups for a little while!

Kayleigh did well today, especially considering how full the day was. We decided not slow the weaning process down even more. Going from 1mg/day to .5mg/day wasn’t working great. Too many head aches. Today we did .5mg in the morning and .25 mg at night. She went all day until 9:00 pm with out a headache. She had a mild headache show up after 9:00 pm so we did a dose of .25 mg making the daily total .75 mg. Still less than 1 so that makes me happy too!

Please continue to cover Kayleigh with prayer.
1.) Complete healing this side of heaven.
2.) No headaches so she can enjoy everything on board.
3.) Safety while we are away.

Thank you all!

Until tomorrow,
‘Carrow 💜

Internet service is extremely expensive on the ship. If you would like to see our pictures from today please check out the Facebook page

https://m.facebook.com/Prayers-for-Kayleigh-187306011663522/?ref=bookmarks

Holy cow… What a day!

We are safely in Orlando. We arrived at 11:30 pm and are just now fed and in the bed. I think we will sleep in a little tomorrow morning! This was the first plane ride for Kayleigh and Cole both and the first one that Grace will be able to remember. We had a fantastic Southwest team that really treated Kayleigh like a princess. It was a fantastic experience!

Kayleigh’s headaches are still making appearances. We are still working to keep it under control with the steroids but trying to lower the dose at the same time. It’s tricky. Would you please pray with us that we will be able to continue to lower the dose and still keep the headaches away?

I would also appreciate your prayers for traveling mercies and safely while we are gone.

I hope to be able to continue my updates even on the high seas. Stay tuned for the Exploits of Kayleigh, I think they are going to prove to be entertaining.

Until tomorrow,
‘Carrow 💜

Whew… What a crazy day!

Kayleigh and I began our day by going to the St. Jude affiliate in Huntsville. I had thought it would be a quick trip but I miscalculated. We were there almost 3 hours, but thankfully, everything went well and Kayleigh had an overall good report.

We are still battling headaches most evenings. They seem to be worse the more active she has been. Of course, most days are very active days and I don’t foresee that slowing down in the near future. So my prayer is that we will find the right combination of steroids and patience to keep Kayleigh feeling good. I so much would like to get her off of the steroids completely but more than that I want her feeling good!

On a fun note, this evening the kids and I were able to pull off the biggest surprise in the history of our little family. With the help of some amazing friends we managed to get Tim’s jeep to the body shop to get fixed up and painted. It had been my plan to make that happen for his birthday this year but the DIPG diagnosis put a kibosh on that! I was shocked the kids were able to keep it a secret!

As I finally lay myself down here in the wee hours of the morning I cannot help but be completely overwhelmed by our amazing friends, family and community. Everywhere we go people stop me to let me know they are praying for Kayleigh and our family. Anonymous people have paid our check at dinner, complete strangers have donated money to help with expenses, friends have brought us costumes and luggage so we can put together the most magical trip possible.

So while it would be easy to look at today and just see Kayleigh’s headaches – and worry, I am choosing to focus my eyes on bring thankful. Thankful for all the things God has done for us. Thankful for each moment. Thankful for an amazing vacation opportunity. Yes, today is a good day. Did you know when you get busy thanking God for everything that it is nearly impossible to worry? When my eyes are on Him, walking on the water is simple. Eyes toward heaven and one foot in front of the other.

I pray that each of you will take time to rejoice in the Lord, wherever you may be. Even if you’re in the eye of the storm, there are still things to be tankful for, I promise. And God is good to care for his children that are obedient to his teachings.

Philippians 4:6-7
6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

Proverbs 3:5-6
5 Trust in the Lord with all your heart; do not depend on your own understanding. 6 Seek his will in all you do, and he will show you which path to take.

Until tomorrow,
‘Carrow 💜

Greetings from the frenzied Disney Packing house! Our trip is quickly approaching and I am working hard to get this family of 5 ready for rest and relaxation! My to do list is still quite long but things are beginning to come together. We have been so blessed by wonderful friends that have loaned us suit cases, costumes, and clothes.

I have nearly all of our documentation together but still have many forms to complete. I would appreciate prayers that I can finish everything by tomorrow evening. I am hoping to have an non-stressful Friday!

Today we managed to lower Kayleigh’s steroids to .5 mg for the whole day. She did have a small headache pop up but Tylenol was able to take care of it – thank you Lord! We visit with the St. Jude affiliate in Huntsville tomorrow to make sure she is doing well. That will certainly make me feel better about leaving! Please pray that we will be able to come up with a plan to get Kayleigh all the way off the steroids without the head aches.

Kayleigh’s big birthday request this year was for pierced ears. However, radiation would have required her to remove the earrings every day so we told her no. So, tonight we had a post radiation celebration and she had her ears pierced. She is so excited!

Our Hartselle Black team is kicking booty on the softball field. They won both of their games today. We are all so proud of you girls!

Until Tomorrow,
‘Carrow💜

Brave before…

Brave during…

Happy after!!