Author Archive: 'Carrow McClendon

About 'Carrow McClendon

Kayleigh is a bright, fun, beautiful, 7 year old, little girl that was diagnosed with DIPG on May 11, 2016. This site is to share her journey and prayer requests.

July 13, 2016

Forgive me for not keeping the website up to date. I have bee posting to Facebook and honestly just too tired to post to the website as well. But here are all the posts from Wednesday in order… I will post today’s shortly.

11:50 a.m.

I need all my prayer warriors on over time duty. Kayleigh started feeling badly this morning. She has a terrible headache and has been vomiting since before 6:00 am. I don’t even know what to ask you to pray for. Just pray.

1:08 p.m.

Please keep praying. I was able to email her doctor. We gave her a large steroid boost hoping that will get things under control. She woke 30 minutes later vomiting again but sounding a bit more like herself. She is asleep again right now. Please pray that she is better when she wakes. If she is not we will need to take her to a hospital on the island. That certainly would not be ideal but we know God is in control. Thankfully, He is still graciously granting me peace, even in this. I know He will make the path clear, please just continue to cover Kayleigh in prayer. I will post again when she wakes.

3:30 p.m.

God is not answering my prayers quite as I have asked. We are going to be going to land to have her checked at a hospital here. Please pray specifically for traveling mercies and that we will be able to get her home safely. Pray for skilled doctors to be able to help her. Pray for me as I travel with her for safety and wisdom. Pray for a miracle. And pray for God to be glorified in every step. I cannot see the path but I know He is not surprised by this. I know He is in control. And while my mother’s heart is scared, I know my God is bigger than this.

Also, Tim is traveling with only a passport card. We are trying to see if there is a way for him to get a temporary passport so he can travel with us. I don’t know if that is possible and we certainly don’t want to do anything that will slow down getting Kayleigh home and feeling better.

7:08 p.m.

We are in Jamaica at the hospital. I don’t even know what city. We are waiting for labs, a CT scan, and then for a neurosurgeon to get out of surgery to look at it and see if she needs surgical intervention or if she is ok to fly.

I spoke with our doctor at St. Jude. He is waiting for the neurosurgeon to call him tonight so we can make a plan. Dr. R says it could still be other things, not the tumor, but we won’t know until we see the scan. She is currently getting fluids while we wait but she is still sleeping and responds very little. Please pray the fluids help. Please pray for a miracle. Please pray we can afford all of this care as well. They do not take our Blue Cross insurance here and I do not know if we have any other insurance from the trip. I am working on that now.

I know God is bigger than all of this. We trust him above all else. Even today, especially today, God is good.

1:58 a.m. Thursday

Quick update… We are still in the hospital in Jamaica. Kayleigh is still sleeping, we cannot get her to wake up or open her eyes. She had a seizure while we were here and they gave her medicine to calm her brain. Unfortunately, it makes her sleep too so we don’t know if it’s pressure causing her to sleep or the meds. We are praying it’s the meds and that she will wake up!

If she does not wake on her own they will have to put a drain in her head to relieve the pressure. Med evac has been called for her. We have wonderful people who have moved heaven and earth to find this nee evac and get her back to the states. We are so thankful. We are also thankful for the wonderful people here in Jamaica. The staff has overall been kind and helpful.

Tim was able to get special clearance to fly with us even though he only has a passport card. Please pray that we continue to find favor with the people we come in contact with. That Tim will not have any problems flying and we will get Kayleigh back to the states swiftly.

Pray for Kayleigh to wake up. That surgery is not necessary. For no more seizures. For peace, grace and mercy.

Even as I sit here, often times in tears, I hold tight to the fact that God is sovereign. He has been good to clear a path for us. That his way, plan, and timing are all perfect.

Kayleigh’s verse – Jeremiah 29:11
For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.

Pray big my friends. Ours is the God of miracles. Claim one for our girl now.

Much love,
‘Carrow💜

July 11, 2016

God is so good!

We have had a lovely day in Cozumel, Mexico. Our shore excursion for today was a dolphin encounter push, pull, swim and it did not disappoint! We all participated. Our beautiful new dolphin friend, Noel, gave us kisses, pushed us on a boogie board, and gently pulled us through the water belly to belly. Kayleigh was absolutely thrilled, as were the rest of us! We also had a little free time to swim in the pool and shop in the down town area. It was very touristy but the kids loved it.

Kayleigh had a wonderful day. Any exertion in the heat is very hard on her. Even just standing, waiting for the encounter to begin, drained her rapidly. Thankfully the water was cool and refreshing and that revived her. She did have another mild headache after the excursion, during lunch, but thankfully it did not linger. This morning we did .5mg of steroids again because I knew it would be a strenuous day, but tonight we did only .25mg, that pulls today’s total at .75 mg, .25 less than yesterday’s. It is my prayer that she will not have a headache when she wakes in the morning!

I really do not like these headaches. As I have written before, I pray for Kayleigh’s healing every day, and the Lord grants me peace every time I come to him with my request, just like it says in 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.

That peace is unreal. To be in the middle of this storm but have peace? All I can say is thank you Jesus. And while my heart is convinced that God is good, His plan is perfect, and that healing is coming, my head still tries to look at things rationally. My head reminds me of the headaches, and that creates unease. Not really doubt, but an unrest in my heart. Why is she having headaches? Did radiation not help? Did something else go wrong? But I am learning now to capture those thoughts and turn them willingly over to God. Those thoughts are no good for me. They taint the beautiful present if I dwell on them.

So tonight as I was telling God all about my head He directed me to Philippians 3:8-10

8 Yes, everything else is worthless when compared with the infinite value of knowing Christ Jesus my Lord. For his sake I have discarded everything else, counting it all as garbage, so that I could gain Christ 9 and become one with him. I no longer count on my own righteousness through obeying the law; rather, I become righteous through faith in Christ. For God’s way of making us right with himself depends on faith. 10 I want to know Christ and experience the mighty power that raised him from the dead. I want to suffer with him, sharing in his death, 11 so that one way or another I will experience the resurrection from the dead!

This passage reminds me that nothing matters but Jesus. I agree with the writer, Paul, I want to know Christ and experience His power. Thank you Lord for your gracious comfort. No, God did not give me verses on healing which was my worry, He reminded me of who He is and what is of value. And tonight, that gives me peace.

Please continue to pray…

1.) Miraculous healing this side of heaven.

2.) No headache!

3.) That Kayleigh will be able to tolerate the heat tomorrow and love visiting new places.

4.) For Grace and Cole who struggle with why Kayleigh is getting so much attention.

Until Tomorrow,

‘Carrow 💜

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July 10, 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 💜

 

July 9, 2016

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 💜