Monthly Archive: July 2016

It is 7:11 am EST and Kayleigh has just gone back for the shunt surgery. Her head is hurting very badly this morning. We are praying this surgery will give her immediate relief.

Please pray for the surgeons to have sure hands. That God directs their every move. And that relief is immediate and long lasting for Kayleigh. Please pray for no complications, no infection, no issues for Kayleigh.

God is good. Thank you Jesus for another beautiful day. I will update as I hear more. The surgery can take up to 4 hours.

Hopefully we are tucked in for the night! Kayleigh’s scan and symptoms point to increased cranial pressure due to fluid build up because of enlarged ventricles… All of that makes it sound like I know more than I do. Basically, fluid isn’t draining properly so her body needs some help. The doctors here, as well as our St. Jude team, all say it could be inflammation from the radiation. Honestly, we don’t know. What we do know is that surgical intervention can make life better so that is the route we are going to go.

Tim and I both have a spirit of peace. We are impressed with the entire staff here. They have been fantastic. They tell us the surgery itself should take about an hour. Of course we have anesthesia before and recovery after but still, it should be a half day affair. As long as there are no emergencies tonight Kayleigh will probably their first patient tomorrow morning (around 7:00 am EST). They will be placing a shunt in her head under the skin that drains into her stomach. Considering what they are doing, the procedure is actually minimally invasive. Once it is in and they observe her for a day or two we should be able to head north. Where we go after this will be determined by how she does.

Please pray for the doctors to have sure, sturdy hands guided by God himself. Pray for supernatural wisdom on their parts as well. Pray for peace for Tim & I as we wait. As always, pray for complete and miraculous healing!

We cannot begin to thank all of the amazing people who have helped us in this journey, from the ambulance, nurses, doctors and our liaison Lee in Jamaica, to the REVA medflight team, to Miami children’s, to customs & boarder patrol – everyone has been kind, attentive and amazingly helpful. Thank you all for helping us take care of our precious girl!

Until tomorrow,
‘Carrow💜

Here are today’s posts in order so far. I will post again tonight once we have a finalized plan…

4:45 a.m.

She has opened her eyes on her own and has been talking to me. Thank you Jesus!! Med evac was delayed until 7 am so we are holding steady waiting for them to arrive.

We are still concerned about the increasing pressure in her head so hopefully Miami Children’s will have a good plan for us. Thank you so much for the way you have covers us all in prayer. Please keep praying!

9:15 a.m.

We are loaded on the plane and about to take off for Miami. Kayleigh is awake, responsive, and inpatient… Thank you Jesus!! Please continue to pray we are able to clear US customs quickly. Our next stop is Miami Children’s.

Keep praying big!
‘Carrow💜

2:00 p.m.

Thank you so much for your prayers! God cleared a path for us to get state side quickly and with very little fuss. Even Tim flying with his passport card was not an issue. Every person we came in contact with this morning has been amazingly kind and helpful. We know this could have been a huge fiasco but though God’s infinite grace and all of your prayers, this difficult situation has been manageable.

I have told God, on many occasions, that I will do whatever it is He asks of me. I certainly don’t know what His plan is for all of this, but He has shown His faithfulness to us at every turn. So for now, I will just continue to tell you all the Parables of Kayleigh and pray that our story encourages you.

Hug your loved ones close tonight. You never know what tomorrow will bring.

Much love – until later,
‘Carrow💜

5:00 p.m.

We need prayers! We are waiting to talk to the neurosurgeon here at Miami Children’s. We had hoped the medicine would help relieve the pressure and surgery would not be necessary – but, Kayleigh is becoming more symptomatic. The headache has returned even after the large doses of steroids, she is nauseated again, she is more tired, and her speech is slowing down.

The neuro team has been on standby for her so we are waiting for them to come talk to us and finalize a plan. Please, please, please pray that the doctors will have clear direction as to what needs to be done and that they will be able to relieve the pressure in the Lear invasive way possible. We are taking about surgery on her head and that scares me.

Thank you Jesus that we are in the states and will be able to get home more easily. Thank you for this talented team and great hospital. I hate that this is needed but I know God is at work. Please Lord, direct the entire teams thoughts as they craft Kayleigh’s plan. And please have your angels by Kayleigh’s side at every moment keeping watch over and protecting her.

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💜

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 💜