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.

September 4, 2016

I am happy to report a lazy day from Memphis. We have loved having Tim’s sister and family in town for the past couple of days. It’s so nice to not be in a hurry and just visit. We’ve watched movies, played oars games, and eaten good food. You just can’t beat that!

Kayleigh’s stomach did ok most of the day. She still had tummy aches but they were manageable. She ate a little off the diet for dinner tonight and that immediately upset her stomach. It’s truly amazing what kind of effect food has. We moved Kayleigh’s chemo medicine to 8:30 pm tonight. Unfortunately, those medicine’s combined with the poor food choices at dinner made her completely miserable for hours. She finally fell asleep about 1:30 am which is why I am posting so late. Would you please pray that she will wake feeling better in the morning?

We are praying for the day where we have NO stomach ache. Even the “manageable” stomach aces are awful. Knowing anything you put in your mouth is going to make you feel crummy is not fun. Not fun at all!

Tomorrow we have one more day of rest and relaxation. Yay!

Until tomorrow,
‘Carrow 💜

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September 3, 2016

September 3, 2016

It’s football season!! Woo hoo!!! We have enjoyed a lovely day of sleeping late, watching football, and generally being lazy.

Our main battle is still Kayleigh’s stomach. We are continuing to move her dosing time later in the day. The pain in her stomach is a combination of the medicine and food. The medicine alone makes her stomach hurt but when she eats it makes it so much worse. The problem is she gets hungry! So, we are moving her meds later – closer to bed time – in hopes that she will sleep through some of the worst. Today’s dose was at 6:00 pm and she has been miserable ever since. Tomorrow we will get to get closer to 8:00 pm. Please pray that this plan does indeed work and that her stomach will not be hurting when she wakes in the morning.

Aside from her stomach she is doing very well. The change in her diet has seems to really help her headaches. I never would have thought something like food could cause so much trouble but boy was I wrong. It is certainly a big learning curve for this former “drive thru” mom but it is proving to be worth it. For those of you that are curious we have cut out foods that are known to cause inflammation – wheat, corn, soy & dairy, we have stopped buying processed food, switched to organic meat, and begun limiting sugar. To say this is a lifestyle change would be quite the understatement but we are starting to figure it out. Even Kayleigh is on board big time because she feels so much better. And since it would make her feel bad to require special food, our whole family has made the switch. You would think Grace and Cole would squawk but they have been nothing but supportive. They want her better too – so it’s worth it.

Our prayers continue that the medicine and lifestyle changes will help stop this tumor in its tracks. But we know that it will be God Almighty that stops it, not anything we do. So keep on praying and asking for the remarkable miracle, we know nothing is too hard for our God!

Until tomorrow,
‘Carrow 💜

Jeremiah 32:27
“I am the Lord, the God of all the peoples of the world. Is anything too hard for me?

P.S. – Roll Tide ❤️🐘❤️ – I can’t help myself, I love my team and football season.
And here’s a little War Eagle 💙🐅💙 for my hubby, because I love him and his team, too (unless they are playing mine, then all bets are off).

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September 2, 2016

It’s been another middle of the road kind of days. While I don’t have overwhelmingly good news to share, Kayleigh is steady. We are working to move the chemo to later in the day, closer to bed time, in the hopes that she will be able to sleep through some of the less pleasant stomach issues. Her stomach still hurt quite a bit today so prayers for that to get better would be greatly appreciated!

Kayleigh’s only appointment today was occupational therapy. Her stomach was really hurting this morning but she had been looking forward to this all week so she powered through on sheer determination. I must say when this baby sets her mind on something she goes after it like a juggernaut – NOTHING will stop her. Her therapy was baking muffins and she did a fantastic job!

We are looking forward to a long weekend here in Memphis. We have family coming in to town and the kids are excited. I’m not sure what we are going to do but be lazy is near the top of my list!

Please keep praying that Kayleigh will feel better. Pray that she will be able to eat and not feel sick after each bite. And as always, pray for complete healing this side of heaven and a long, full, healthy life for our girl.

Until tomorrow,
‘Carrow 💜

Daddy and his little girl. Melts my heart…

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September 1, 2016

And just like that it’s a new month. My goodness how time flies. As a parent you know how it is, time just gets away from you and the kids just get bigger, smarter, and need you less. No matter how much we wish time would slow down it just keeps on picking up speed. Oh how I wish I could slow the clock, especially now. I wish I could draw each moment out, savor it more. But alas, that is not in the cards. Time will keep barreling forward and we will just have to do our very best to treasure each moment, storing the memories up in our hearts.

If ever I could pass on helpful advice, it would be never rush the moment. Every moment, even the terrible two year olds meltdown in the middle of Walmart, is a gift. No, you might not think it’s a gift when you’re the one dragging the screaming kid out, but one day you will look back, laugh, and treasure it. Trust me, you will.

I am very pleased to say that Kayleigh improved a bit more today. Her digestive system did come back online and has stayed in check. That is a HUGE “thank you, Jesus!” Unfortunately, the medicine is still causing a great deal of distress, general discomfort, and sometimes sharp pain. Please continue to pray that Kayleigh’s body settles in to the new medicine and is able to tolerate it without pain. Pray the medicine is not doing any damage to her digestive system or any other good thing, that it is only attacking this tumor!

We had a light day, only physical therapy, and we spent the rest of the day baking muffins and resting. Days like this are good for Kayleigh, she seems to get re-energized. After dinner tonight we went to visit Anna at the hospital. Her medical team is still working on what exactly caused her infection and what they need to do but she looked great! We had a wonderful time playing games and just getting to visit. What a joy it is to just be with friends!

Another profound moment we have had this week had to do with Kayleigh’s hair. Hair loss isn’t even listed as a side effect in the drugs Kayleigh is taking but we have been told it is a possibility. It could be that nothing really happens, or it thins, falls out, or anything in between. Every patient is different. As I was washing Kayleigh’s hair I noticed more and more strands were coming out. Even more when I dried it. I am not noticing any significant thinning yet but it made me a little nervous. I didn’t mention it right away but by the next morning I felt like
I needed to at least address it so Kayleigh would have time to process the possibility. As I reminded her that what she was taking was chemo and that losing hair was a possibility Kayleigh surprised me. I was expecting tears but instead I got a half shrug and “I know it might happen Mom, it’s ok.”

It’s ok… It’s ok? I was dumbfounded. I don’t know how we got from hysterical crying a month ago to “it’s ok” today. We haven’t even spoken about it again because honestly, I’ve been avoiding that conversation. Finally, after a few minutes of waiting (I was still waiting for the tears to start) I asked her what was different.

Me: What’s different now?
KB: Anna
Me: Anna?
KB: Yes. Anna… and Sawyer

And that was it.

She has these two special friends that are battling brain cancer, each in their own way. Their strength has given Kayleigh courage and comfort and helped her see that while it may be crappy, its still ok. Of course we are still praying for her hair to stay, but we are also learning lessons about how God doesn’t always say “yes”, and that sometimes His “no” is just moving us on towards a better yes. It gives us more lessons to talk about God’s perfect plan & timing. No matter how old you are, that’s a pertinent lesson.

Thank you all for your continued prayers. We need them and we can feel them.

Until Tomorrow,
‘Carrow💜

Visiting with Annaimage

My reading buddyimage

Big kids playing Unoimage

How cool is this? Thank you Coach Cochran!!! image

August 31, 2016

Thank you friends for your continued prayers on our behalf.

Today has been better than yesterday, thank you Jesus, but there has still been a great deal of discomfort. We met with the doctor heading up Kayleigh’s trail this morning. Evidently, this is a very normal side effect for this medicine. We even found out that other doctors that have been using this drug prescribe Imodium along with the chemo so at the first sign of an issue it can be kept in check. That information would have been good to know, but since Kayleigh is one of the first children on the trial, and how to handle the situation wasn’t really written into the protocol, our medical team didn’t know exactly what to expect. It also means that since she had such a difficult time of it that they needed to decrease the dose of one of the meds. It is our prayer that this dose will be strong enough to do the job but low enough to allow her body to start balancing itself.

At the risk of sharing entirely too much information, or prayer tonight is for Kayleigh’s bowels to start moving correctly again, on their own. Every time she eats it triggers intense pain and discomfort because it isn’t working through her system properly. Please pray that her system will start moving gently, that the lower dose medicine will cause less discomfort and that her body will settle into its new normal. Please pray protection over her stomach, and entire digestive system, that the medicine will not cause any problems but will shrink this tumor!

Aside from this hiccup (albeit a kind of nasty hiccup) Kayleigh is doing well. Her blood pressure and heart rate both came down which was good. Her CO2 levels went up a little so she is no longer “critically low,” and is just “low.” We are praying for it to be in the normal range by next week!

It would be so easy to just look at the bad but truly, there is more good than bad. As I re-read the story of Abraham and Isaac tonight my heart was drawn to verse 14

Genesis 22:14
14 Abraham named the place Yahweh-Yireh (which means “the Lord will provide”). To this day, people still use that name as a proverb: “On the mountain of the Lord it will be provided.”

Yahweh-Yireh… Jehovah-Jireh… The Lord Will Provide… This is who my God is. He is the one who will provide. I am learning that God’s provision often does not look anything like I think it should, and that’s a good thing. I am so short sighted. Yet He sees all time, beginning, middle and end. So, I will take comfort in Him and I will rest in the arms of Yahweh-Yireh, because He cares for me.

1 Peter 5:7
Give all your worries and cares to God, for he cares about you.

Psalm 55:22
Give your burdens to the Lord, and he will take care of you. He will not permit the godly to slip and fall.

Until tomorrow,
‘Carrow💜

Playing in the goody box that arrived today!image

Meet uave such wonderful friends!image