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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 💜

Radiation 10 of 30 went great. We were the first ones in for treatment this morning which put us on the road earlier than usual. We made it home by lunch – in time to get Cole to Dr. P! I love the way the Lord takes care of everything. I also love our pediatrician and his staff who stayed late for us. Thank you Jesus all around, for every detail!

Kayleigh is thrilled to be home. She is enjoying Bess & Grandaddy time this afternoon and our precious Nat is coming to stay with all the kids so Tim and I can slip away for dinner just the two of us. Thank you so much for all of your prayers, Kayleigh is still symptom free and feeling really good. Keep on covering our sweet girl with your prayers – they are working!

As for Cole, we don’t have a diagnosis yet. Dr. P has some ideas, none of them terribly serious (thank you Jesus some more!!) but we need to do further testing. The plan right now is to have an ultrasound of the lump next week and make a plan from there. Please pray specifically that the doctors are able to determine what the mass is with the ultra sound, that it is not anything serious, and that it will be something straightforward and simple to take care of.

So many times we her people say “God won’t give you more than you can handle”. I’ve got one word for that, it’s one my great grandmother liked to use – PIFFLE. Piffle, piffle, piffle! I’m going to tell you right now, all of this is more than Tim & I could handle on our own. If we didn’t have our faith in Jesus and our complete certainty in God’s sovereignty, we would be floundering. So I’m going to alter that statement – God won’t give you more than you can handle IF you are trusting Him to carry the load NOT trying to fix things yourself. I’m a fixer – that’s a tough lesson – but I am learning and I’m seeing God do amazing things when I let go of the reins.

Learning to trust God in every detail is one of the many blessings we have received on this journey. I know God still has so much in store for us and amazingly, we are looking forward to it. So, thank you Jesus for another good day. Thank you friends for holding us up with your prayers – they matter!

Luke 1:37
“For the word of God will never fail.”

Until tomorrow,
‘Carrow 💜

Radiation 9 of 30

Today has been a wonderful, awesome, fantabulous day! Friday’s we have nothing but radiation and usually it’s early in the morning so we can get on the road to go home. So today that gave us nearly a completely free day!

After treatment we drove to pick up Grace & Cole at the camp ground in South Haven. They had a great kid’s area so Kayleigh had fun swimming and sliding with the big kids and we enjoyed just watching them be normal.

This afternoon Kayleigh got a surprise from home. One of her sweet friends from school and her family were in Memphis for the weekend and we were able to meet for dinner! Kayleigh was ecstatic. To make it even more fun dinner was at the bowling alley inside the Pyramid Bass Pro shop. We cannot thank Brad & Samantha enough for giving up their family time to bring Brenna & Brady to play and buy us dinner! It was wonderful for Tim and I to get to enjoy grown up conversation too – even if we did have 5 kids interrupting us every two seconds – I wouldn’t have traded it for anything. It was just what we all needed to unwind!

Tomorrow morning we have treatment at 8 and hope to get on the road by mid morning. Please keep praying!

1.) Complete healing this side of heaven.
2.) Continuing treatment and steroid decrease to hold with no bad side effects.
3.) Cole’s neck.
4.) Safe travels home and back.
5.) Kayleigh’s friend “A” – no bad side effects and complete healing!

Until tomorrow,
‘Carrow 💜