Monthly Archive: June 2016

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?

A month… It’s hard to believe it’s been a month since Kayleigh was diagnosed. So much has happened in that short time period, more things really than I can even begin to list. As I sit back and reflect it is awesome to see God’s hand in every detail. Sometimes I think we forget that God cares about everything. We go to Him about the big things, we go when we have no other hope, too often He is our last resort – but He doesn’t want to be our last resort, He wants to be where we go first. Each detail of our lives matter to God. When we take the time to talk to Him and listen for His direction we exchange our worry for His peace. If you stop right there – and really think about that for a minute – it’s a little mind boggling.

I wish I had better words to describe the way our relationship with Jesus grants Tim and I peace through all of this. We can see the storm raging all around us, we are completely aware of what the doctors are telling us; and yet, we are not concerned. We are not afraid. In fact, we are filled with more joy than we have ever experienced. Joy. Peace. Faith. Trust. God is pouring all of that and so much more into us each day. We are living day-by-day, treasuring every moment – and man oh man is God giving us moments to treasure.

We have no idea what God has in store for us or for Kayleigh, and you know what? That is ok. We know that He is going to work everything for good and that His plan is far superior to anything we can even think to ask for. So, we are going to continue to center ourselves in Christ, drawing our strength from Him. We are going to continue to pray for our precious girl, for miraculous healing – believing that He is able. We are going to continue to research and plan for phase 2 all the while praying that phase 2 isn’t necessary. And while we do these things we are going to rest peacefully knowing God has everything under control.

Joshua 1:9
“This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”

Matthew 5:36
But Jesus overheard them and said to Jairus, “Don’t be afraid. Just have faith.”

Tonight I had planned to write a lighter hearted post but it seems God had different plans. I pray that if this is something you needed to hear tonight that you are encouraged, that your heart is renewed. I pray that you have the peace that comes from knowing Jesus.

Prayer requests:
1.) Complete healing this side of heaven!
2.) Continuation of improved symptoms and no bad side effects. We will hopefully take the last steroid pill tomorrow morning!
3.) Safe travels and a clear path back to Memphis tomorrow.
4.) For the path for phase 2 to become clear but that it won’t be needed!!

Until tomorrow,
‘Carrow💜

P. S. – attached are my lighter hearted pictures.

Kayleigh asked to wear her princess dress to church this morning. I started to say no – but really, life is too short. If you have a princess dress you should wear it!

And her high heels – if you’re going to be a princess you’ve got to wear the shoes (even if you do have a brain tumor that messes with your balance)!

Just keep your brother close to hold you steady!

Sometimes I sit down to write these posts and I just don’t even know where to start. First of all we want to thank you for all of your kind comments and shares about Kayleigh’s special night last night. As I sit here tonight her video has been viewed almost 39,000 times. Her story has been shared 448 times, liked over 1,800 times and Facebook tells me that single post has reached almost 90,000 people… 90,000 people? Holy cow.

When we see the people Kayleigh’s story is touching and the positive effect our sweet girl is having on so many people, I can actually see a glimmer of why God is allowing this storm in our lives. It is a very strange thing when you start saying thank you to God for cancer. And truly, it’s not the cancer we are thankful for but rather what the cancer has brought about. If the Devil’s plan was to use this disease against us to bring about fear or divide us then I hope he’s realized that was a seriously poor decision. This cancer has strengthen our family and grown our relationships with God in exponential ways. This cancer has drawn an entire community together not just in support but it prayer. This cancer has helped us share the love and peace that Jesus offers to people all over the globe. No matter what happens, no matter how God answers our prayers, this cancer cannot win. Jesus has already won and because of that Kayleigh has already won – no matter what.

That all being said I still want my baby to have a long, beautiful life. I am praying God will spare her as he spared Isaac when Abraham had him on the alter. I am praying for a big miracle. One of those miracles where there is no doubt that God did it because there is simply no other explanation. And I am very much looking forward to giving God all the glory for the wonderful things he is doing and will be doing.

Tonight I am giving God the glory for this beautiful weekend. Last night was amazing and today was just as fabulous. My plan was to let Kayleigh go last night’s games and today to go to Grace’s. But when Kayleigh found out her team was playing today she just HAD to be there. She told me that her team might need her – I mean she had hit a home run right? What if they needed her to hit another one? Needless to say, she won that argument.

Coach Jojo let her play right field for an inning and hit in the first game. She struck out that time but took it in stride and told me that striking out was ok. Thankfully, there was a long break before bracket play began so I was able to get Kayleigh to go home with Bess and rest for a little while. But she was not taking her uniform off – she had to be ready to play at a moments notice!

Today her team played 5 games and Kayleigh was there for 4 of them. She didn’t play every game and she didn’t care. She was so happy to just be in the dug out. She did get up to bat and get a hit on the 2nd pitch in the 4th game. That game was against the other Hartselle team again – and again, they made sure she made it home. Home run #2 is in the books. Tonight she is passed out in the bed from sheer exhaustion – but this is the good kind of exhaustion. I cannot remember the last time I saw her so completely happy and content. It does my heart good to see her like this!

Prayer requests:
1.) Complete healing this side of heaven!
2.) Continued strength and no bad side effects.
3.) For many more years of softball playing!
4.) That Tim & I will continue to faithfully share Kayleigh’s story and that it will spread far and wide with the hope we have in Jesus.

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

What an amazing day! Every day that we have is a good day. Every minute, every hour, every breath, God continues to fill our time with beautiful memories. But some days, God just fills a day to overflowing – today was one of those days.

We had radiation 15 of 30 today… We are officially half way done! We can tell it is helping because her symptoms are better even as we decrease the steroids – thank you Jesus! But I really hate for radiation to be over because that is when the clock starts ticking and it’s just wait and see. Wait and see when the tumor will become progressive again. Yes, we certainly will be doing a trial of some sort to try to slow down the tumor and kill it, but the medicine we know of right now doesn’t seem to be able to get rid of this monster. That is why we persistently ask for you prayers for healing! Every time the doctors tell us what they can’t do we have an opportunity to tell them that’s ok, we know what God can do! We are praying diligently that God will answer our prayers and we look forward to the opportunity to give God all the glory for the things he has done!

Today Kayleigh was the first one in for radiation which put us on the road nice and early. She had been very disappointed about missing Vacation Bible School at our church this week so we made a beeline from St. Jude directly to church. We made it with about 30 minutes left in the VBS day but that was enough time for her to see her friends, pet the animals at the petting zoo and play on the bouncy houses. She also got to get on the stage and talk to the kids. Those 30 minutes were well worth the trip and that would certainly have filled is full of great memories today. But God wasn’t done yet.

Kayleigh loves softball. She loves to watch, play and talk about softball! When we are at St. Jude nurses and doctors ask two questions 1.) What is your name? 2.) What do you like to do? Her answers are always the same – my name is Kayleigh and I like to play softball. This evening, our Hartselle Tiger 8u All Star Softball teams were actually playing in Hartselle. Not only were they playing, but when we got there they had a uniform, helmet, and spot on the roster for her to come play too. They even announced her before the game and awarded her a trophy for making All Stars. She was ecstatic!

The original plan was for Kayleigh to be the bat girl. You see, the tumor started causing problems at the end of the regular softball season and she stopped being able to hit the ball. She has not willingly picked up a bat since her diagnosis. They tried in physical therapy one day but she just wouldn’t cooperate. She had lost her confidence and was afraid of embarrassing herself. Tonight when Coach Jojo asked me if it was ok to let her hit. I told her I didn’t think she would but it was ok for her to ask. And guess what? Kayleigh said yes! She said yes not just to hitting, but getting up there with a whole bunch of people watching.

I’m attaching a link to the video of the hit. What you don’t see is the 2 strikes and 6 additional “foul balls” (I’m pretty sure none of which actually hit the bat) that came before the hit. What you see here is my baby getting that hit and the fielding team making sure she made it all the way around the bases. Her very first home run! You will also see BOTH teams clearing the benches to congratulate her at home plate. For a few minutes we had no sides, everyone was Team Kayleigh. Kayleigh won’t ever forget this night and neither will those of us that had the opportunity to watch.

If you read these updates often you know I don’t usually use people’s names because frankly, not everyone wants their business all over the Internet. Before this I certainly didn’t! But tonight these thank you’s are too important not to be personalized.

Johnny – thank you for the All Star presentation tonight, and approving Kayleigh to be on the team. That was a wonderful idea and it boosted Kayleigh’s confidence.

Jeremy – thank you for getting on the PA system and making it a big to do. She loved it.

Jojo – thank you for letting her be on your team and treating her like one of your own. She wouldn’t have hit for anyone else, you made her feel like she could do it. You may not ever get rid of her!

Alan – nice pitching. She came in the dug out and said “I like hitting with him, I think I’ll do it again”.

Brandon, Brandon, Matt & Carlos – thank you for letting her take over the dug out and distract the girls. I know that wasn’t helpful but she thoroughly enjoyed it.

Daryl – thank you for making a string of the worst “foul ball” calls in history. Any other game and I would have been questioning your eye sight!

Amy – thank you for approving the foul ball calls, allowing the substitution, and for fielding the ball in a way that she made it all the way home.

Thomas – thank you for approving the whole thing – it gave all of us spectacular memories.

Hartselle Cardinal – thank you for letting Kayleigh score and then being so excited for her. You girls are wonderful.

Hartselle Black – thank you girls for making Kayleigh a part of your team, loving on her and making her feel special.

Prayer Requests:
1.) Complete healing this side of Heaven.
2.) For radiation to get rid of this tumor even though doctors say it can’t.
3.) For no bad side effects and her energy levels to stay up as she comes off the steroids.

Thank you for your prayers. We love you all.

Until tomorrow,
‘Carrow 💜

https://m.facebook.com/Prayers-for-Kayleigh-187306011663522/