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Wow, what a night! You know, I’ve started looking forward to writing these posts. At first I started because we needed prayers so badly. We were desperate for prayer warriors to join us begging God for mercy for our baby girl. But now, I like sharing with all of you. Yes, we still need prayers. We still need a miracle. Nothing medically has changed – but I have, we have. God continues to grant Tim and I incredible peace. When the bible says “peace beyond our understanding” (Phil 4:7) it isn’t lying. I wish I could explain it better but I’m pretty sure it’s just one of those “you’d have to be there” kind of things.

Now I write these posts sharing the good and the bad knowing that each of you that take time to read it are helping carry our load. “Share one another’s burdens” (Gal 6:2) – some of you ask how we are able to do this, to have hope, to be positive, to still trust God. Partly it’s our faith, but part of it is all of you. All of you wonderful people, so many we’ve never even met and yet here you are, sharing our burden. You send us encouraging notes, you pray for us, you guard us on a spiritual level, you support us financially. You are our army – God’s army – whom shall we fear?

Tonight our softball family came out in full force and I don’t just mean Hartselle. Every team I saw tonight was wearing purple. From the little 6u teams to the big girls, they had a “Purple Out” for Kayleigh. When we walked in that ballpark my baby kept saying “look at the purple, just look at all the purple – they are wearing it for me”… I so wish you could have seen her face. Yes baby girl, they are wearing purple for you.

In Kayleigh’s world, just getting to go to the game and be in the dug out with all the girls absolutely makes her day. But tonight the League had a surprise for her. Before the game every team gathered on the field for an announcement and award presentation. North Alabama USSSA awarded Kayleigh an MVP plaque and those precious girls cheered for her like crazy. Truly, that was awesome. But more awesome was our friend Carlos that led Kayleigh to the middle of the field and watching the entire ballpark bow their heads and pray over Kayleigh. Asking God for a miracle. Dry eyes were hard to find after that.

If I stopped this story right here it would still be one of the best nights ever but in the words of any great infomercial – but wait! There’s more!! Kayleigh played! Coach Jojo put her in to bat, Coach Allen pitched, and Kayleigh swung – a LOT. That blue made some of the worst calls you’ve ever seen. I’m pretty sure Allen pitched 15 times and her bat didn’t touch the ball once but that blue just kept on calling foul balls. David, we will be eternally grateful for those bad calls. And to the precious Russellville team that did not disputed those calls and purposefully made some of the worst fielding throws you’ve ever seen to keep the ball in play and Kayleigh running around the bases, we thank you as well.

Now, what I want you to all know about Kayleigh tonight… She didn’t feel good. The steroids just aren’t quite balanced yet and her little body is still struggling. Radiation makes her a little tired but she will fall asleep standing up before she will admit it. She had a headache come on about 15 minutes before we pulled into the ballpark that was making her right eye droop almost to closed. But softball, her team, her coaches, they give her purpose. They drive her. Tonight softball was the best medicine. It may not cure cancer but I can promise it made her feel better than anything else could.

We are now on our way back to Memphis. Kayleigh has treatment in the morning at 10:00 and then we will head right back this way again to go home. Many folks probably think we are crazy for driving 5 hours round trip for a little league game but I can tell you it was worth every. single. mile.

Philippians 4:7
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.

Galatians 6:2
Share each other’s burdens, and in this way obey the law of Christ.

Psalm 27:1
The LORD is my light and my salvation–so why should I be afraid? The LORD is my fortress, protecting me from danger, so why should I tremble?

Prayers for tonight:
1.) Complete healing this side of heaven.
2) For us to get the steroids balanced so she is feeling better and then to be able to wean her down slowly to get off them completely.
3.) For direction on phase 2.

We love you all very much.
Until tomorrow,
‘Carrow 💜

With the Hartselle 6u team

Talking to Coach Jojo (I’m pretty sure daddy still makes this face 😜)

Receiving her MVP plaque

Supporters from Rogersville!

They may be “the other team” on the field but they were ALL team Kayleigh

Up to bat!

Playing right field with Adily

Praying after the game

Russelleville sporting 14

Thank you Coach Jojo!

You play hard when you love your coach

This precious girl painted hope rocks for Kayleigh to keep with her!

Thank you Russellville

Even the big girls were team Kayleigh – thank you Hatton!

It’s Hump Day! Which means we are half way through week 4. Only 12 radiation treatments left!

Today was a much better day than yesterday. Our friends Jeremy & Ashley made the trip to Memphis to help us swap out kids and to just visit with us. It’s a wonderful thing when you have friends you enjoy doing nothing with, or at least nothing terribly important. We did take a quick tour of the hospital, eat good bar-b-q, and stop by the pyramid for fudge but that was it. Other than that we just visited at RMH – boy was it good for our attitudes after a stressful Tuesday!

We did have to increase Kayleigh’s daily steroid dose a little. We had the 1mg in the morning and this evening she had a slight headache so we added .5mg tonight. The doctor told us that is was a possibility that she would need more after yesterdays’s episode so we were just thankful we had what we needed to keep her feeling good! We see her oncologist tomorrow so we will have a more solid plan by tomorrow afternoon.

Now how about something really cool? During our kids swap Grace brought the mail up to us. In it there was a box from the University of Alabama Athletic Department. When we opened it there was a note to Kayleigh from the Alabama Softball team! It also had an autographed poster and softball and a few other things. She was ecstatic! I sure do love my Crimson Tide – even my War Eagle loving husband was thinking Roll Tide today (yes, we are a house divided). I don’t know how they found her story or our address but I do know that they absolutely made my sweet girls day! Thank you Bama for making a difference! #RTR #tidesoftball #rolltide

Prayer Requests:
1.) Complete healing this side of heaven.
2.) A good plan to wean her off the steroids and she not get sick.
3.) Direction for her treatment after radiation.

Thank you all for your prayers!
Until tomorrow,
‘Carrow💜

Well, today has been eventful!

We started off the day a little later than we have been which means we got a little more sleep – that’s a big praise for this mommy who’s been cruising on 5 hours or less each night. Woo hoo! Kayleigh slept well and felt good this morning but after radiation she started having a headache. We hoped that it was just from stopping the steroids and that it would ease up. The headache was fairly mild and she didn’t have any nausea so we went on to her other appointments. She did physical therapy, occupational therapy, and child life all with this headache. I called her clinic and was given the OK to give her Tylenol to help the symptoms to see if we could stay off the steroids. We filled her Tylenol Rx at the clinic and headed back to Tri Delta.

Meanwhile… we were told last Friday that we were going to be moved to Ronald McDonald House which isn’t really what we wanted. By moving to RMH we would no longer be on campus, we lose our cafeteria meal card and are no longer eligible for mileage reimbursement for the trips we make back and forth. On the plus side we can leave our things at RMH on the weekend instead of packing everything up each week. Monday when I spoke with housing I left feeling like they were going to allow us to stay in Tri Delta but was told to come back this morning to confirm. When I went back this morning I found out we were indeed moving to RMH. So, while I was taking Kayleigh to her appointments Tim and Cole were back at the room packing up our things and loading the car after just unloading them the night before. I’m sure you can guess what kind of mood everyone was in…

By the time Kayleigh and I met Tim and Cole at the car she was beginning to cry because her head was hurting so badly. It progressed rapidly to the point of vomiting within minute. Usually vomiting helps her feel better quickly but today she didn’t bounce back like usual. To compound the problem we were in between rooms with no where to go. Checked out of Tri Delta and had 2 hours before we could check in at RMH. So we buckled her up with her blanket and pillow and drove around Memphis while she slept. That is when I sent the mid day prayer request. My goodness how thankful we are for all of you! Thousands of her prayer warriors were on the move in moments. Moments! God is amazing.

While we drove I called her clinic to let the doctor know what was going on. They decided to put her back on the 1mg steroid dose for now and to wean her down slower. Evidently while 1mg doesn’t sound like much it’s a little high to drop off of cold turkey. So now the prayer is that we will be able to keep coming down and get off completely in the near future. Kayleigh slept for about 20 minutes and woke up completely back to normal and hungry. That was a huge thank you Jesus!

We are now unloaded at RMH. Diner was brought in by a local restaurant so it was nice not to have to get out. The facility is quite nice so while we weren’t thrilled about being moved here I am quite sure everything will work out fine. I’m also certain the Lord has a reason for us being here. Perhaps there are people here we need to meet, or perhaps it’s something else all together, I don’t know. What I do know is God always has a reason even when I can’t see it. So we are going to just wait and see what He has in store for us.

And while we wait, tonight we are enjoying some family time in the awesome craft room just down the hall from us. Check out Kayleigh’s awesome family tree. Some of the leaves are our finger prints – it was all her idea. We are looking forward to adding Grace’s finger print tomorrow!

Isaiah 40:31
But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.

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.

Romans 12:12
Rejoice in our confident hope. Be patient in trouble, and keep on praying.

Until tomorrow,
‘Carrow 💜

It was pet therapy day!

Welcome to Ronald McDonald House

Planning her family tree

The nearly finished project 

1:00 – Midday prayer request –
Our first day off steroids is not going as we had hoped. Kayleigh has had a headache most of the morning since radiation. We spoke with the nurse practitioner and decided to try Tylenol hoping that would work and that maybe the headache was just from not having the steroids in her system.

Unfortunately that didn’t work. Her headache escalated to screaming, crying and vomiting. To compound matters we are in between rooms. Tim had just checked us out of Tri Delta and we don’t have an appointment to move into Ronald McDonald house until 2:30. So we are riding in the car as she rests.

Please pray for the doctor to help us make a good decision for her care and for her to not feel like this again.

I will update again tonight.
‘Carrow💜

3:00 pm- Thank you all for your prayers. Kayleigh had a quick nap and woke up right as rain and hungry. Thank you Jesus!

I will post a better update tonight.
‘Carrow

This has been a long Monday! After our jam packed weekend of softball, swimming and staying up too late we had a crew of tired, cranky people to cart back to Memphis today. It seems someone (me) thought it would be a good idea to bring a sibling with us to help entertain Kayleigh so she wouldn’t be lonely… All you parents of multiple children are now shaking your head – and rightly so. I’ve been wondering what I was thinking since we pulled out of the driveway this morning. Cole & Kayleigh have been fussing, picking and whining ALL. DAY. LONG!!! Ahhhhhhhhhh!!

And then that small voice in my head says – yes, but she’s here and able to pick, poke and pester, she is here acting like a normal 7 year old girl with her brother – and that stop me in my tracks. It doesn’t mean their annoying, whiney banter doesn’t bother me, but it does make me thankful for it. Every minute of every day. That doesn’t just mean being thankful for just the good minutes, it means every minute. I am probably going to have to remind myself of this regularly this week as they fuss and it drives me nuts; but, tonight, as they both lay sleeping on either side of me because they both wanted Mommy, my heart is full and I know even the bickering is worth it.

So, on to treatment things… Today was radiation treatment 16 of 30. It was also hopefully our last day of steroids! Tomorrow will be the first day since 5/16 that she has not had steroids. We have been weaning her down slowly and up until today there had been no worsening of symptoms but this morning she woke up with a mild headache that went away fairly quick. Then tonight before bed she had another headache. None of them were severe and nausea did not accompany them so that is good. I have also noticed her right eye drooping a little more. It is possible it is just her body beginning to adjust to no steroids, we will just have to pray, wait, and see. We need all of you prayer warriors on the war path for healing and feeling better!

Kayleigh also had an OT appointment, Radiation Oncology consult, vitals and child life visit today. At our radiation oncologist appointment the Fellow that checked Kayleigh out first was talking about the steroids and he mentioned to Kayleigh how once she got off the steroids she would “be able to get rid of those puffy cheeks.” Ugh. Up to that moment she had been oblivious to her weight gain and her puffy, steroid face. From that point on today Kayleigh was uncharacteristically quite. It literally ate at her all afternoon long. At dinner she finally looked at me with tears in her eyes and said “Mommy, I don’t like having to fight this”. And before bed she was looking at herself in the mirror asking if she had a big belly and did I still love her. She has been so strong through all of this. Much of that comes from all of the positive support. But one careless comment, a comment that was meant to be helpful, broke her sweet spirit.

So tonight I have many prayers requests…
1.) Complete healing this side of heaven!
2.) Kayleigh to be able to come off the steroids completely and no more headaches or other bad side effects.
3.) Rest tonight to help restore her bright, beautiful, fun loving personality.
4.) Cole and Kayleigh to enjoy each other and for Tim and I to enjoy them.
5.) The treatment path for phase 2. We do not have an answer on this yet but we are seeing God do some mind blowing things to help us figure out Kayleigh’s plan. Keep on praying for clear direction, God is certainly answering your prayers!

Verses for tonight

1 Thessalonians 5:16-18
16 Always be joyful.
17 Never stop praying.
18 Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

Isaiah 41:10
Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.

Until tomorrow,
‘Carrow 💜

3 peas in a pod

Out to dinner with her new AG doll Grace

Don’t you wish you could do therapy on a scooter?