Monthly Archive: October 2016

Hello Prayer Warriors –

I’m starting tonight’s post with a verse…

20 “You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible.”
Matthew 17:20

I don’t know what you all are doing differently, but the child I have spent the day with today is completely different from the child we brought her on Sunday. Some could say it’s because they increased her steroids, but I believe it is because of the thousands of warriors we have storming heaven on our girl’s behalf. We are praying, God is hearing, and I am looking forward to watching this mountain hurl itself into the ocean!

Today we saw Kayleigh’s oncologist and to say he was pleased with what he saw would be an understatement. After this weekend he was expecting the worst. Instead he came into a room full of people and a precious Kayleigh, wide awake, watching TV, visiting with family. Her speech was better, swallowing improved, and she even had the tiniest of improvements in mobility on her right side!

She certainly has many hurdles still in front of her. There is still a huge concern about progression. The other doctors we saw at Lebonheur felt the CT scan she had done showed significant progression. Kayleigh’s oncologist however does not want to make any plans without the MRI because it will show is a much better picture of what we are truly dealing with. That means we have until 2:45 pm on Wednesday to storm heaven asking for a remarkable miracle – that is when she has her scan.

My primary prayer is for complete healing this side of heaven. Complete healing immediately would be awe inspiring, and certainly something that could not be explained by anything but God Almighty. However, if that is not God’s plan right now my prayer is for a remarkable miracle of some sort just the same. Yet, no matter how God chooses to answer my prayer, I will choose to praise Him for His matchless goodness, and be thankful for His continued guidance, mercy, peace and grace.

Joy truly does come in the morning – and today God gifted us with fresh joy all day long. I opened my Facebook page to friend after friend that had changed their profile or cover picture to Kayleigh. Friends have organized a fundraiser softball tournament, and other friends have organized a prayer vigil for tomorrow night to pray for Kayleigh, entering God’s courts on a mission of intercession for our girl. God has used each of you to reinforce our convictions and regrow our faith. Yesterday, I looked at my precious child and i wasn’t sure my faith could continue holding on for a miracle. Today, I look at her and smile – then I look to that mountain and smile – we are going to tell it to jump. Not me alone, but WE as a group of believers.

If you are able to pray with us tomorrow please do. If you’re local to Hartselle, AL they will be meeting at the Hartselle Softball fields off of Nance Ford Rd with prayer beginning at 6:30 pm CST. If you are not local or can’t join us, if you could stop and join us in prayer at 6:30 pm CST we would be so very grateful.

Get ready mountain… Here we come…

Until tomorrow,
‘Carrow 💜

Jeremiah 29:11-13
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. 12 In those days when you pray, I will listen. 13 If you look for me wholeheartedly, you will find me.

The crew with KB before heading home

Will pushing KB’s chair – he was a great driver!

They actually gave Cole paints and told him to paint the windows of Kayleigh’s room!

A friend sent me this… Yes, He can!

Let’s begin by saying it’s been a good but difficult day. We woke at Lebonheur to the nurse telling us we were ready to be discharged whenever we were ready. I realize they didn’t have to do extensive surgery but telling us were ready to go less than 12 hours after having her head cut open didn’t sit very comfortably with us. It felt like they realized they didn’t have the answer for her so we should just move on. Yet, there we sat, with a child that woke up even less responsive than yesterday, in need of care, unable to do so many things with out assistance, lethargic, feeling completely unequipped to care for her, and being told to just take her home.

Thankfully, our nurse was kind and told us we didn’t have to rush out. So, we emailed her St. Jude doctor and nurse practitioner and let them know our concerns. The were also very concerned by Kayleigh’s deteriorating condition and made plans for us to come straight tonSt. Jude and be admitted. At least that way they could monitor her, make sure she is comfortable, and help us get a handle on how best to take care of her.

The biggest shock of the day was being told that we needed to decide if we wanted to sign a DNI and DNR orders for Kayleigh. Do not intubate… do not resuscitate… it is not possible to describe the grief those words brought over us. Overwhelming, all encompassing, and completely debilitating. Neither Tim nor I could hold it together. That was one moment I was very thankful that Kayleigh slept so deeply. It was time for us to weep, and just hold on to each other.

We made our way to St. Jude by lunch time and they had us in a room before 2:00 pm. Given the situation we called in family to visit if they want to and had Grace and Cole brought over to be with us. I had a difficult discussion with both Grace and Cole to prepare them, not just for Kayleigh today but for what the future might hold. I don’t want them living in fear but I also don’t want them wondering what’s going on or wasting precious time they could have with Kayleigh.

This evening we had a lovely time with Tim’s parents, my parents and the kids. Kayleigh enjoyed having everyone here until about 8:00 pm where she promptly told everyone she was tired and they needed to go. Even with everything going on she’s still quite a funny little bird.

One thing we learned today is that it is possible that a medicine change that was made a few weeks ago could have been impeding one of the chemo meds. I can’t help but hope that now that we’ve changed the meds back, that it will start working again. Tomorrow we meet with her oncologist to discuss options. Please pray with us for the perfect doors to be open and for God to be the orchestrator of our plan.

2 Corinthians 3:5
It is not that we think we are qualified to do anything on our own. Our qualification comes from God.

Our devotion today was perfectly tailored to our needs. It is from Every Day In His Presence by Charles Stanley

Kayleigh came through surgery well but we did not get the news we hoped for. When they got in to check everything they found the shunt was working as it should be. The cause for all of these symptoms is not a malfunctioning shunt, it is out worst fear, disease progression. All they had to look at today was a CT scan, nothing nearly as good as an MRI, but from what they could see they believe it has progressed quite a bit.

To say our hearts are broken would be an understatement. I had high expectations for what God was going to do, but it appears it is not His timing yet. So we must carry on. We must continue to pray. Continue to believe. Continue to hope. Continue to focus our eyes on God and trust Him to direct out steps. Tonight things look bleak, but new mercies come in the morning!

So tonight as we go to bed I will choose to say “thank you, Jesus” for another day. Please continue to cover us all in prayer. We are not done fighting!

Psalm 34:4
I prayed to the Lord, and he answered me. He freed me from all my fears.

Psalm 30:5
For his anger lasts only a moment, but his favor lasts a lifetime! Weeping may last through the night, but joy comes with the morning.

Psalm 121:1-2
1 I look up to the mountains— does my help come from there? 2 My help comes from the Lord, who made heaven and earth!

Until tomorrow,
‘Carrow 💜

We are at Lebonheur and have seen a couple neurosurgeons. They all agree it appears that Kayleigh has a “gross shunt malfunction”. They will be taking her into surgery very soon.

Please pray for the doctor to have skilled hands guided by God himself. For there to be no unnecessary bleeding. For no infection. For them to get this thing working and in place.

We are thankful to be here and for doctors that are on top of things. The staff here has been wonderful and Kayleigh is still in a good mood even though she feels so crummy. As always her personality has endeared her to everyone around her. We know God’s hand is on Kayleigh and we have perfect peace that we are in the right place doing the right thing for our girl. Please cover every part of this procedure and healing in prayer.

Until later,
‘Carrow💜

Kayleigh has had an X-ray series of her shunt done to check placement and a CT scan to check functionality of her shunt. We are now waiting to see the doctor here. Thankfully, one of her Huntsville oncologists is here. I’m sure they are talking with St. Jude now trying to figure out a plan. Of course, for us, just waiting is hard. We are praying for good news. Looking at our girl right now, good news will certainly be a God sized miracle, but we know God is able and we are praying for his favor.

Please keep praying. We need it. I will
Post again as soon as we know more.

Until later,
‘Carrow💜