Monthly Archive: June 2016

I am thrilled to report another wonderful day, thank you Jesus!

Today was the busiest day we’ve had all week. Kayleigh had radiation, labs, OT, PT, and a neuro oncology visit. That was 7 hours straight at the hospital and while she was tired after it was all over she really did great.

Overall this week has been pretty smooth sailing. Kayleigh has had a few headaches break through on occasion but thankfully none of them were terrible. However, because they have been occurring her doctor decided it would be best to stay on the same dose this week and see where we are next week. Thankfully he does not feel like we need to increase which is a direct answer to our prayers. Thank you Lord!

One side effect Kayleigh is having is some hair loss at the radiation site. That is not unusual and hers is not terrible. Thankfully as long as I pay attention to how I style her hair no one will ever know. But every time I brush her hair and more strands show up in the brush she gets a little concerned. Her friends are battling the same thing so it is a tender subject around here.

In order to make Kayleigh feel a little better about it I pulled out my yarn and crochet hook and went about making a hat. I figure even if she doesn’t like what I make I can donate them to St. Jude. But she was pretty excited. She was even more excited when she googled “crocheted hats” and found an Elsa hat complete with hair. She sent me the screen shot at 9:00 this morning and has been cracking the whip all day for me to get it done. Patience is NOT one of her strong suits.

So tonight we are snuggled up in the bed. I’m enjoying another night of holding my baby while she sleeps and praising the Lord for another good day. I have no clue what tomorrow holds and I have discovered that I don’t need to. God has never failed me and He won’t start failing now.

Here are some of my verses for this week…

Luke 12: 25 & 26
25 Can all your worries add a single moment to your life? 26 And if worry can’t accomplish a little thing like that, what’s the use of worrying over bigger things?

Matthew 6:34
So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.

Philippians 4:6-7
6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 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.

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

Deuteronomy 4:8
Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.

I pray each of you that have read this far are encouraged. Please keep praying. Know that we love you very much –

Until Tomorrow,
‘Carrow💜

A kitty cat mask from a goody bag sent to the hospital

A beautiful treasure from a sweet friend

Playing hockey for PT

She really enjoyed it!

Her Elsa hat

Thank you Jesus for a wonderful day!

Wednesday’s are easy days for us as far as appointments go. Today it was radiation only and then we had the whole day to do whatever we wanted. Of course it’s 95 degrees and humid around here so the zoo and most other out door activities were off the list. Thankfully, one of our new friends here at St. Jude invited us to their place to swim. Kayleigh was thrilled!

After swimming we had the opportunity to meet some new friends at Tri Delta, eat pizza, and visit with other parents dealing with the same kind of thing we are. There is just something about sitting with people that understand exactly where you are that is peaceful. We don’t have to explain anything to them because they are in the same boat. We can just enjoy adult conversation and screaming kids. We are going to miss our new friends when we go home but we’ll be keeping up with all of their stories and praying hard for each of them.

Tonight’s prayers are exactly the same as last nights…
1.) Complete healing this side of heaven.
2.) For our phase 2 plans to start coming into focus. Clear direction!
3.) For phase 2 plan to not even be needed.
4.) For us to be able to successfully lower the steroids.
5.) Kayleigh’s new friends – Anna, Sawyer & Alyssa
Each new friend is a treasure and each one is fighting a BIG battle. Brain tumors are vicious and unrelenting but we know God is bigger.

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 💜

Awesome gifts delivered to the hospital!

Thankful for friends!

Thank you Brian and Jars of Hope

Psalm 121:1 – 2

Happy Tuesday night everyone. I am very happy to report that operation “Rest & Do As Little As Possible” is well under way this week. Even though we are shooting to keep the days low key Kayleigh still keeps us on our toes. Thankfully she is still feeling good and is staying active!

Today Kayleigh had her 22nd radiation treatment – only 8 more to go! She also had occupational & physical therapies as well along with a visit from Child Life but we were still done before lunch. She spent the afternoon napping and playing her iPad while Tim and I took care of work and housekeeping things. We enjoyed dinner and ice cream with friends tonight and made a quick run by Target. It was so incredibly normal.

It is quite amazing how our priorities have shifted in this short time frame. And not just priorities, but the things that bring us joy have shifted as well. Watching Kayleigh walk, talk and laugh. Watching her get to play with friends. We no longer are rushing from one thing to the next, making plans for what we need to do next. Now we are enjoying each moment and living in the now. Currently, our idea of planning is about 5 hours ahead – max – and the Lord is teaching me that is ok

Tonight’s reminder to not worry and keep the faith…

Luke 12:27-32
27 “Look at the lilies and how they grow. They don’t work or make their clothing, yet Solomon in all his glory was not dressed as beautifully as they are. 28 And if God cares so wonderfully for flowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith? 29 “And don’t be concerned about what to eat and what to drink. Don’t worry about such things. 30 These things dominate the thoughts of unbelievers all over the world, but your Father already knows your needs. 31 Seek the Kingdom of God above all else, and he will give you everything you need. 32 “So don’t be afraid, little flock. For it gives your Father great happiness to give you the Kingdom.

Isn’t it awesome to read that God already knows our needs? Not only does He know them, but He wants to meet them. Not just meet them, verse 32 says He wants to give us the Kingdom. Wow. When we stop and think about just how big God is you realize there really is no request too big for him. So keep on praying big prayers. I know I am!

Prayer requests:
1.) Complete healing this side of heaven.
2.) For our phase 2 plans to start coming into focus. Clear direction!
3.) For phase 2 plan to not even be needed – wouldn’t that be awesome??
4.) For us to be able to successfully lower the steroids.
5.) Kayleigh’s new friends.
We are all making precious friends here. I am starting to understand what people mean when they say we are now a part of the St. Jude family. Everyone here is battling for their child, everyone here can empathize with one another. There is camaraderie between complete strangers because you just get it. Every new friend we make is added to our prayer list.

We love you all –
Until tomorrow,
‘Carrow💜

Just a reminder for myself

She is on a mission – no time for pictures!

Unless you stop at Starbucks…

Yep, then you even get a smile if you bribe with a vanilla bean frappe

We matched! Thats one of those special little things.

Radiation 21 of 30 is in the books.

We made it safely back to St. Jude today. Kayleigh had radiation #21, vitals and her radiation oncologist visit today. We had to fill them in on last weeks eventful “try to get off steroids but be very unsuccessful” escapade. They seemed to be please that we are still sitting at only 1mg total for the day. It is even possible for her to need a higher dose as we complete radiation because radiation itself can cause swelling. Please pray very specifically that Kayleigh is able to stay at this 1mg dose and possible wean lower!

My precious friend Patty came to visit today. She was on her way from Nashville to Birmingham and decided to “just swing through Memphis”. If any of y’all have looked at a map you will know that while we are in the same state as Nashville we are WAY out of the way for Birmingham. Kayleigh thoroughly enjoyed showing her around and Tim and I were thrilled at the hour we had to unpack our stuff while Patty entertained her!

So tonight we are happily unpacked and settled in for the week. We’ve stocked up on snacks and drinks and I’ve done laundry. With just the 3 of us here this week I am hoping for a little R&R.

Prayer Requests:
1.) Complete healing this side of heaven!
2.) Kayleigh is able to at least stay at 1mg of steroids/day – and go lower if possible!
3.) Direction of Tim & I as we continue to work on phase 2. We are seeing God in big ways on this one. We don’t have a decision but I am very much looking forward to telling the story of how God puts it all together. Just the little pieces we are seeing tells us that all of our prayers are moving mountains – don’t stop!
4.) Rest. We are tired. Last week was a doozie. We were pretty dang frazzled by Friday. I personally was an emotionally wrung out dishrag crying at the drop of a hat. Then we run non-stop when we are home trying to cram everything in because we want to share Kayleigh with as many people as possible. It’s a perfect storm of exhaustion. So this week out goal is to regroup and rest!

Thank you all for standing with us. So often you are what holds us up and keeps us going. We cannot begin to tell you what that does for us.

Until tomorrow,
‘Carrow💜

I didn’t get a single picture today! I will do better tomorrow 🙂

Happy Fathers Day!

We certainly had a good day enjoying family and taking it easy. We head back in the morning to start week 5 – time sure is flying. Please continue to cover Kayleigh in prayers. She had a headache show up this afternoon. It did not get out of hand but it sure scares us.

Prayers:
1.) For complete healing this side of heaven!
2.) For her headaches to stop totally.
3.) To be able to come off the steroids.
4.) Safe travels to Memphis.

Until tomorrow,
‘Carrow💜