Monthly Archive: June 2016

Thank you Jesus for another good day! Radiation 14 of 30 is done and tomorrow we will be halfway done! It really seems like we just got started, time is flying. If ever I wanted time to slow down before I REALLY want it to slow down now.

As I have mentioned before Kayleigh’s favorite part of he day is radiation. She loves it so much that she armed herself with a nerf gun so she could shoot her techs today. They loved it and were great sports as she used them for target practice! I’m pretty sure she will be armed from now on but next time they might be prepared for her she’d better watch out!

Today was also her clinic day where they assess her blood work and we meet with the nurse, nurse practitioner and oncologist. Kayleigh’s labs looked good and she is nice and strong. The doctor decreased the steroids again today and as long as she is still feeling good we will stop steroids all together on Tuesday! We are so thankful for medicines that help her feel better but we will be thrilled when she can come off of these.

We also had a great discussion with her oncologist. We talked about the trials that we have found, the trial here at St. Jude and what he suggests for phase II if this was his daughter. Dr. R was really great. He sat with us and didn’t rush. He talked through all of the options we brought up. We don’t have a plan yet but we know that he wants what is best for Kayleigh just like we do. So keep on praying, God is laying out our path one step at a time. And while I would very much like a full plan from here to healing I know that isn’t how this works. So we will continue to pray, continue to be faithful, and follow where God leads. His plan is always better than ours anyway!

Prayer Requests:
1.) Complete healing this side of Heaven!
2.) Continuation of no bad side effects as we continue radiation and decrease steroids.
3.) Kayleigh has developed a little bit of a cough, most likely just allergies, but please pray with us that it clears up and does not turn into anything more!
4.) Safe travel home and a wonderful weekend with our family making memories!

Nahum 1:7
The Lord is good, a strong refuge when trouble comes. He is close to those who trust in him.

Until tomorrow,
‘Carrow 💜

Even though this has been difficult, God has been amazing and we are thankful for His guidance and provision!

Aren’t the Defatur All Stars great too?

Waiting to ambush her friends

Half of her radiation crew and Anna (our friend A)!

Happy Wednesday!

Today was a fun day for Kayleigh Bug! This week is the FedEx St. Jude Golf Classic here in Memphis and School Services planned a field trip. About 25 of the St. Jude kids got to ride a charter bus to the golf course and hang out at the club house. They did arts and crafts, ate good food, watched a FedEx plane get dedicated and watched a little golf. Kayleigh had a fantastic time and Tim and I had a little time to make calls and talk freely with each other, that’s something we don’t get to do often.

This afternoon was radiation 13 of 30. She is still doing great. No side effects and her symptoms are nearly gone. Doctors call this the “Honeymoon Period.” Basically, if you didn’t know what was going on, you wouldn’t know there was anything wrong. It’s wonderful to see her being her fun loving, happy self. While it is wonderful we know we need to put a phase II plan together. So, yesterday we spoke with New York about radioactive isotopes. Today we spoke with Germany about immunotherapy and started the ball rolling to talk to Bristol about their treatment. At this point we are gathering all the facts we can about everything that is out there. While this is a pretty rare diagnosis there are still quite a few options to weigh. Thank you for your prayers as we continue to sort through big words, tiny details, and weigh all the options.

Tomorrow is a busy day. We will see Kayleigh’s oncologist again and hopefully talk about how to get off the steroids completely! That will be a wonderful milestone.

Today is also a very special day, it’s my grandmother’s birthday. Happy Birthday Gran! We are praying Kayleigh gets just as many birthdays as you do!!

Prayer requests:
1.) Complete healing this side for heaven.
2.) A plan to get off these steroids completely with NO bad side effects.
3.) Clear direction for phase II
4.) No need for phase II treatment because she is completely healed!

We know our God is a big God and capable of all things so we are praying that all of this research is not needed! Hey, if your prayers aren’t so big that they scare you, you need bigger prayers… At least that is what my friend Cathy says. She’s a pretty smart cookie and I’ve seen her big prayers. I’ll just say, God is good and she knows what she is talking about.

And while we are praying big prayers, no matter how God answers, we will remain steadfast. We know that God is at work through our precious girl – she is touching hearts, growing others faith, reminding people to hope, teaching us to pray – she is making us better people, better parents, stronger believers. She is our David and we pray she destroys this Goliath.

1 Corinthians 15:58
So, my dear brothers and sisters, be strong and immovable. Always work enthusiastically for the Lord, for you know that nothing you do for the Lord is ever useless.

Romans 8:28
And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

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.

Matthew 17:20
“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.”

John 14:13-14
13 You can ask for anything in my name, and I will do it, so that the Son can bring glory to the Father. 14 Yes, ask me for anything in my name, and I will do it!

These are some of our touchstone verses. We have many more but this is enough for tonight. Wherever you are, whatever your situation, nothing is too big for God. Take heart – the Almighty God, Creator of Heaven and Earth, loves you. And he cares about every detail of your life. That should give you comfort! I know it comforts us and surrounds us in mind boggling peace. Thank you Jesus for another good day!

Until tomorrow,
‘Carrow 💜

Lookie there – it’s a post before midnight!

This backpack was for snacks!!!

A beautiful day for golf and ice cream!

Our sweet Kitty Cat – Meow!

Just a little reminder…

Brief Cole update:

Ultrasound shows it to be “normal tissue” thank you Jesus! For now we will watch it but we do not need to do anything immediately. We will reassess at his well visit in July. I will update more tonight but I wanted to let everyone know we appreciate your prayers. They were answered!!!

Radiation 11 of 30 is in the books.

After out whirlwind trip home this weekend returning to St. Jude actually gives us an opportunity to slow down. As always, Kayleigh was eager to get to radiation – she missed her people. We also had our weekly radiation oncology visit today. Usually these visits are on Tuesdays but our doctor is out of the office for the next couple of weeks so we saw a different doctor. He was great and quite pleased with how Kayleigh was doing. He also asked if we had made a plan for phase 2 (after radiation). We told him that right now we are planning to do the trial here at St. Jude but that we were also starting to look into other trials and asked his opinion. He gave us a few things to look at and suggested that we get the ball rolling on information gathering and consults. So now we start the search – finding what trials Kayleigh is eligible for and if they are a good fit for her.

For me this is a daunting task. I’m certainly no medical professional. I sell steel for heaven’s sake! But if nothing else I am tenacious and this is my baby we are talking about. These folks better buckle their seat belts, I’m about to start turning over every rock I can find. Every state, every country, if they have a trial I am looking for it. And as I turn over each rock I am praying for direction. Praying for God to direct our path and to make His way perfectly clear.

Up to this point I have avoided the Internet and digging deeply into DIPG. I already know what doctors say is the prognosis. I know what it is we are facing. I haven’t felt it necessary to feed the gloom. These past few weeks, since diagnosis, I have spent my time reminding myself of God’s promises and God has been faithful to show up in all manner of things big and small. I guess you can say I’ve been gearing up. Now, as I begin to delve into all of this information – statistics, treatments, prognosis, life expectancy, I can easily see where Satan will use that to try to steal my joy and dampen my hope. Even today, after just beginning, I felt the effects of all the negative information. My hope wasn’t gone but I felt like I lost a little sparkle. So, I put the information away, held my sweet girl until she fell asleep and then went for a run on the elliptical machine downstairs (for anyone that knows me – insert gasp now – I ran on purpose 😳). While I ran I listened to my Chris Tomlin Pandora station and the Lord reminded me song after song that He loves me, to trust Him, that His plan is perfect – he refilled my cup. He is indeed a good, good father.

So, today was a GOOD day and tonight I will rest knowing that God is in control and He already knows what is coming around the corner. Please continue to cover all of us in your prayers.

Requests:
1.) Complete healing this side of heaven.
2.) Kayleigh to continue to do well with no bad side effects as we lower the steroids.
3.) Her energy levels to hold steady – she was more fatigued today than usual
4.) Her little heart and mind as she is hearing things about her treatment and she is working through it trying to process the information. We are praying for no fear!
5.) Cole! He has an ultrasound tomorrow at 1:30!! Pray that it goes well, they are able to determine what it is, that it is not serious, and will be easily treated. We are praying a hedge of protection around him!

As always, thank you for standing with us. We love you all very much.

Until tomorrow,
‘Carrow 💜

Happy Sunday!

What a beautiful day today has been. It has been jam packed with wonderful things which is why I am so late with my update! I cannot begin to tell you all how thankful I am that Kayleigh is feeling so well. Prayers, medicine and treatments are helping so much. Truly, if you didn’t know our story you would look at her and think she is a perfectly healthy, normal, little girl. With this diagnosis it would be easy to get caught up in trying to look ahead at the “what ifs” but what a waste of time that would be. We are learning to live in the now and enjoy these wonderful days the Lord is giving us. One. Day. At. A. Time. None of us are guaranteed tomorrow. My advise to everyone is don’t waste the gift of today by worrying about tomorrow.

Since Kayleigh feels so well we are able to fill up our weekends with family, friends and making memories. Another of the blessings is that we get to spend Sunday mornings with our church family. I still get to teach Sunday School, Tim gets to run sound, the kids get to enjoy their friends, and we all get so much encouragement from being in God’s house. If you are reading this and aren’t a part of a church family I would highly suggest you start looking and get plugged in! There is nothing better than being with other believers that pray for and encourage you.

This afternoon my side of the family descended on my mom’s house to celebrate my grandmother and youngest brother’s birthdays. It’s always fun to have a house full of running, screaming, laughing cousins but we treasure the time together even more now.

We also had many special visitors today. Friends drove up from Trussville to deliver a prayer blanket to Kayleigh. She absolutely loved it and promptly curled up under it in my lap for a cat nap. Talk about treasures that a mother stores up in her heart. I just sat and rocked and rocked. We had sweet friends in and out all afternoon bringing us encouraging words, gifts for Kayleigh, love offerings from their churches and community groups, and most importantly prayer.

We finished off our day with dinner with friends and loading the car for tomorrow morning. As I type this now we are ready to go and will hit the road by 8:30 so we don’t have to rush. Kayleigh’s first appointment is at 2:00 and radiation is at 2:15. We also lower the steroids again tomorrow morning… Thank you Jesus!!!

Specific prayer requests:
1.) Complete healing this side of heaven!
2.) That Kayleigh will tolerate the decrease in steroids tomorrow as we start the next week of radiation.
3.) That she will continue to have no bad side effects.
4.) That Cole’s ultra sound will be scheduled quickly and easily.
5.) Safe travels back to Memphis!

We thank you all for your prayers – we love you.

Until tomorrow (technically later today) –
‘Carrow 💜