Author Archive: 'Carrow McClendon

About 'Carrow McClendon

Kayleigh is a bright, fun, beautiful, 7 year old, little girl that was diagnosed with DIPG on May 11, 2016. This site is to share her journey and prayer requests.

May 14, 2016

After a few roller coaster days we are thankful to be at home and doing “normal” things this weekend. Big Sis is playing softbal so we are watching and getting loved on by all of our softball family. A big shout out to our Ice Softball Family all sporting KB’s initials and number, the whole Tigers Elite organization for their posters and gifts and wearing her number, the Sparks for wearing ribbons in her hair, and for so many of the teams not here supporting our baby. LC Pride we love your picture, Hartselle 6u Gators thank you for the game ball, Florence Rec teams thank you for wearing her color and sporting her numbers, Saints, Strike Zone & Ardmore Adrenaline thank you for wearing her numbers, Woodstock Rec ball and umps thank you for praying. I know I’ve missed a zillion of you, please know we love tou and we thank you. Post your pictures to her page, they make her smile!

It’s going to be a long road but so far our goal of making fantastic memories is well underway. Keep praying, keep believing, keep calling, messaging and texting. We may not be able to respond, but your kind words are food for our souls.

Love you all,
‘Carrow

May 13, 2016

It been one of those doozies of a day!

We met with Kayleigh’s neuro oncologist around lunch time today. The scans showed that the Lord chose not to grant our request for immediate healing. It showed the same mass in the same location. We now have a name for it – it’s a high grade Diffused Intrinsic Potine Glioma (DIPG). As the name suggests the tumor is diffused through the brain stem and intrinsically woven through the nerves. It is fast growing and inoperable. There is no cure for it at this time. It is terminal.

Enough bad news! The good news is that these DIPG’s do usually respond well to radiation. So we will be consulting with radiology next week to get treatment started asap! The radiation should start to relieve symptoms and shrink the tumor. Radiation will also have less side effects so quality of life will be good! We are praising the Lord for our wonderful Dr. Parmer. He saw this and acted quickly, thanks to that Kayleigh’s doctors feel like we’ve caught it early. We are also praising Jesus for every minute of every day. We are going to live every day to the fullest and tuck every memory away in our hearts. We are going to love on all of our babies and we are going to share the love of Jesus with all we come in contact with. We are also going to be praying for the doctors to choose the right Medicine’s to treat her. For promising research to come in. But mostly we are going to keep praying to our great, big God. Asking for healing and guidance through the whole process.

Thank you to all of you for standing with us. Your calls, text & messages make us cry and fill us with joy at the same time. We know your prayers are what is holding us up. We have seen it in action and it is amazing. Please keep praying.

Love to you all,
‘Carrow

Happy Birthday! May 13, 2016

It’s a good morning! Kayleigh started the day opening birthday presents, that’s always a good way to start your day :). Her MRI was scheduled for 8:00 am to be done with sedation but Kayleigh didn’t want to go to sleep and she promised to be still – so she did! She was done in the shortest time possible! I spent the whole time praying for a clear scan. I was actually praying that if they could see something in the beginning of the scan that it would be gone by the end. A miracle in hi-def, real time and color! I don’t know if the Lord is going to answer that prayer but I can tell you that Tim and I are at complete peace. We know it’s all of the prayers, it couldn’t be anything else. No matter what comes our way we are determined to be faithful and make sure God receives the glory for every good thing.

We are waiting now to talk with the nutritionist and then a consult with the neuro oncologist. Keep those prayers coming. I could think of nothing more amazing that a birthday miracle. I will update again as soon as we know more.

And yes, she is having cake for breakfast. I did make her eat the pineapple first!

Love to you all,
‘Carrow

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Thank you

Wow. We simply do not have the words to express our gratitude for the outpouring of love from our friends, family, acquaintances and strangers. We are completely humbled. We can FEEL your prayers. We can FEEL the mountains MOVING. Honestly, it’s incredible. We should be anxious and scared but instead we are at peace and full of hope. Hope for a clear scan tomorrow. My original prayer was for this to be treatable, that prayer wasn’t big enough. A smart lady I know likes to say “if your dreams don’t scare you then they aren’t big enough.” I’m going to say the same goes for prayers. I know this is a big prayer, but I know God is able. Kayleigh is His, we willingly place her in his hands. We choose to follow Him, no matter where He leads, and we rejoice because His plan is perfect.

He has already used our sweet girl to touch lives near and far. In multiple states, countries and continents. As Tim said tonight, we’ve seen glimpses of the Lord and all of His goodness in the past two days that we would never have had the opportunity to see otherwise. So please keep praying. We know that is where our strength is coming from. Thank you all.

We love you. ‘Carrow

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May 12, 2016

 

This morning we started the rounds st 7:30. They took labs and Kayleigh did great. We met with the nurse, nurse practitioner, and neuro oncologist. Kayleigh was checked out thoroughly and then we were given the initial report based on the MRI… It was not what we wanted to hear.

It appears that this is a fast growing high level tumor and it is intricately wrapped around nearly all of her brain stem. Because of the location it is inoperable. Other options are out there but none of them are proven. Radiation is our best bet to shrink it but that won’t get rid of it. They say chemo after that to try to get rid of it. So far they have not have much success treating these but this is a cutting edge research hospital so it’s the place to be. Much of the treatment after radiation will be experimental. So please pray that their every step will be perfectly guided.

Tomorrow morning at 8:00 am Kayleigh goes in for a high definition MRI. We are praying for a miracle. For a clear scan. And if the Lord choose not to grant that request then we pray for a very clear treatment plan, one that will grant our baby a long full life.

So friends, light up your prayer chains. Tell your friends, share her story, cover our baby with prayer.

This picture is from her first round of lab draws

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