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Additional Update 3:25 am (technically 9/30)

The stomach bug has hit our house. Grace first. Now Kayleigh. Needless to say, vomiting on top of her terrible belly pain is not pleasant. I am praying that while this was not ideal, maybe it has purged her system and she can start with a fresh tummy slate.

Please pray for the vomiting to cease and for the other end to stop as well (how does one word that delicately???). Unfortunately, I’m not feeling so hot but praying I will not catch it. Prayers are appreciated that Tim and Cole can avoid it as well.

I am hopeful it is done. However if it is. It I will update and ask for prayers. So no news is good news today. I will write again tonight.

‘Carrow💜

September 29, 2016

I was so looking forward to posting good news tonight. And I guess it is some good news, but I’m impatient and wanted lots of good news.

Kayleigh and I spent the morning in Huntsville. We started with a fitting for her we brace. Because her right side is weaker it is hard for her to walk. She is beginning to trip over her toes more often because she can’t pick them up when she walks. She also wears out quickly because it takes so much effort to keep her toes up. The brace should make that easier and hopefully make movement easier.

Our second appointment was with s pediatric cardiologist. One of the chemos she is on has had heart issues in the last so they monitor her regularly. At St. Jude she had an EKG every week and an echo once a month. Today’s Doctor checked her out and said everything looked good – yay!

Finally, after our appointments I remembered a friend had mentioned a bakery in Huntsville that made gluten free goodies. I did a quick google search and found the address was only a couple minutes from the hospital so we went to check it out.

Not only was the entire bakery gluten free but everything was well marked so it was easy to find things Kayleigh could have. We bought one of everything and sat down to our own tasting buffet. I was actually a little hesitant because I know food hurts Kayleigh’s stomach so much and she already had a stomach ache. She woke up with one. But we tasted everything and guess what? It didn’t make her stomach hurt worse! Now, it didn’t make it feel better either but for the first time in 6 weeks she was smiling when she finished eating. And I might add that everything was pretty darn good!

I do wish you could have seen her telling her daddy about getting a cupcake. She was so happy to get something normal. Sadly, the happiness would not stay. About an hour after our snack her stomach started hurting again – badly. My guess is the sugar in the snacks. Because Kayleigh did not show restraint. And she paid for it all day.

It so difficult to see hope around the corner but not be able to reach it. I saw my girl for a little bit today and it was beautiful. It was just entirely too brief. Yet while I could choose to dwell on being sad I have to remind myself that it isn’t worth it. I don’t want to ruin a single minute of the good by being sad. So, I will treasure those brief minutes where my girl’s personality was on display and say thank you to the Lord for allowing me to see it.

Luke 16:10 keeps coming to mind
“If you are faithful in little things, you will be faithful in large ones. But if you are dishonest in little things, you won’t be honest with greater responsibilities.

I pray the Lord will find us faithful in these little things. Faithful to praise Him for every moment. Faithful. That he will choose to bless us with larger things!

Until tomorrow,
‘Carrow💜

Cupcakes!!!

It’s been a little bit better day. But let’s be honest, after yesterday, we didn’t have to have much improvement to be a better day!

Kayleigh has still been batting stomach pain all day. We have worked hard at eating really small, bland meals every few hours instead of large meals. The steroid is still making her hungry and she is NOT happy. The hard part is that everything makes her stomach hurt, and I do mean everything. So her thought process is if it’s going to hurt anyway just give me pizza, or spicy salami, or pasta with red sauce. It’s quite difficult to reason with a “hangry” 7 year old. I keep explaining that at least bananas and apple sauce hurt less but so far she’s not pleased.

My prayer is that we will get through the next few days and that her stomach will start to calm. Of course 27 days from now we have to all of this over again – because of Kayleigh’s lower lymphocytes she will have to have a second flu shot along with another round of antibiotic at the same time. Y’all just go ahead and be praying for that trip now, I get the feeling it’s going to be a doozie. And go ahead and add her nurse to the prayer list too because whoever gets her that day will need the prayers!

Even though she didn’t feel great Kayleigh and I had a good day being home together. We worked on fine motor skills by making bouncy balls nearly all day. It required her to use both hands, steady herself, and think. It was great to see her having fun. We have a one way to go to get her right hand back up to speed. I am also noticing a little more hearing loss on her right side. One of the concerns with this tumor is that once it causes damage to a certain “connection”, even if the tumor shrinks the connection rarely repairs itself. So as we see skills digress we worry about being able to get them back.

So prayer warriors, here’s your list…
1.) Complete healing this side of heaven.
2.) The stomach to calm down!!
3.) We find food that doesn’t hurt!
4.) Her right side regains strength.
5.) Her hearing improves.
6.) Get off these steroids.
7.) No headaches.

Yes, today was a better day. It had to be – when all of you go on high alert we see changes! I went to bed last night knowing I had called in the troops, and that you all would be moving mountains. I went to sleep without worry, trusting that today would be a better day. You can’t know how thankful we are for each of you that prayers on our behalf. Our God is an awesome God and I know He is listening.

Jeremiah 32:17
“O Sovereign Lord! You made the heavens and earth by your strong hand and powerful arm. Nothing is too hard for you!

1 Peter 2:24
He personally carried our sins in his body on the cross so that we can be dead to sin and live for what is right. By his wounds you are healed.

By His wounds… That is more than enough. Good night friends.

Until tomorrow,
‘Carrow💜

I meant to take bouncy ball making pictures today but I forgot. Kayleigh said “just take a selfie for tonight,” so we did 💜

We also played with make-up tonight. It was fun but Grace looks WAY too old!

Mercy! What. A. Day.

I must say I am glad to be tucking my sweet girl in for the night and for this day to be done. Kayleigh had her appointment this morning at the Huntsville St. Jude affiliate. We arrived at 10:30 anticipating a quick exam and round of antibiotics. That however, is not what transpired.

We wound up staying at the clinic until nearly 4:00 this afternoon. She saw the nurse, nurse practitioner, and oncologist, all of which we discussed the tummy troubles with. We saw physical therapy about her feet that are hurting any time she walks more than a few steps. She had blood drawn, a flu shot (that was a huge disaster), the IV infusion, IV flush and finally IV removal.

Kayleigh is always such a trooper. Even with her sore and bruised little hands she soldiers on like a champ. But today, for the first time, my champ lost it. All due to the flu shot. I guess just the idea of a shot sent her over the edge. The doctor and nurse discussed it in front of her but then it took about an hour for the shot to actually get there and be done. In that hour I watched her pick her tiny fingers until they bled and cry giant, silent, crocodile tears. When it came time for the shot my child that never twitches nearly took a swing at the nurse. And honestly, I don’t think I would have stopped her. Thankfully I didn’t have to stop her. She managed to pull herself together. It never ceases to amaze me just how much grit this little firecracker has. Even when she is at her most broken. All of us grown ups could take lessons from these precious children fighting nasty diseases.

Because she was such a trooper we stopped at Hobby Lobby in the way home to get a prize and finally enjoyed our lunch at 4:30 this afternoon.

Unfortunately, between the flu shot and the antibiotic she feels terrible tonight. Her arm is hurting from the shot, her head is hurting, her stomach is hurting, and tonight when she took her chemo it came right back up – along with what little she was able to eat. And yet, even with all of that, today is a good day. It’s a good day because I have had another day with my baby and tonight I’m curled up in the bed with her in my arms as I write this. Nothing is better than being able to kiss her head.

My prayer tonight is for a better tomorrow – for many, many, many more tomorrow’s. For this tumor to shrink a little more each day. For Kayleigh’s strength to return in her right side. For no steroids and no need for chemo. My prayer is for a miracle. It’s a tall order, but thankfully my God is bigger and He is infinitely able to do exceeding abundantly more than I can imagine or dream – and I dream big – so I’m expecting big things.

Please continue to cover our sweet girl in your prayers. We know they are making a difference. Even on hard days God is good.

Psalm 40:1-3
I waited patiently for the Lord to help me, and he turned to me and heard my cry. 2 He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. 3 He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the Lord.

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

Romans 4:21
He was fully convinced that God is able to do whatever he promises.

Where ever you are dear friends, I pray you will never forgetting God is bigger than any situation you are in.

Until tomorrow,
‘Carrow💜

We were so thankful Bess went with us today to help keep Kayleigh occupied  

It was COLD in the clinic!!

Greetings from the McClendon house this lovely fall evening. Of course, here in Alabama it doesn’t feel like fall yet – but that’s pretty normal. We had a pretty successful day overall, especially for a Monday!

Both Grace and Cole were back at school and Tim was back at work. Kayleigh and I stayed home where she enjoyed just being home and relaxing. I spent the day cleaning and sanitizing my kitchen. Even though Kayleigh’s numbers are not expected to drop drastically I decided it would still be a good idea to give everything a good scrubbing and some disinfecting just to be safe. Hopefully by the time I return to work next week my house will be in order.

Kayleigh had a pretty good day. She did not have any headaches which is a huge blessing. Her stomach did hurt all day which is so difficult to watch. Every time she eats I pray her stomach will be ok, but every time it hurts within just a few moments of the first bite. We have also noticed that antibiotics really aggregate the stomach situation. Unfortunately, kids on the steroids and chemo have a very specific immune system suppression that makes them particularly susceptible to a certain strain of pneumonia. Because of that she is on a precautionary antibiotic three days a week. As you can imagine, those three days are particularly bad on her little tummy. Really the 4th day isn’t much better either. That means 4 out of 7 days she hurts badly.

Obviously we still want to protect Kayleigh from the pneumonia so the antibiotics are important. However, her oncologist has told us about another option, it’s an IV antibiotic but it only has to be administered once a month. There are some concerns that this medicine might not be as good as the oral ones but at this point we feel it is worth at least trying. If we can do anything to help Kayleigh’s quality of life go up it is worth it!

So, tomorrow we will be going to the Huntsville affiliate office for labs and the antibiotic infusion. We would appreciate your prayers that these meds will work just as well for Kayleigh as the oral ones and that she will get some relief in her tummy. Please keep praying we can continue decreasing the steroids without side effects. Pray for this tumor to continue to get better a little more each day.

Thank you for continuing to stand with us.
Until tomorrow,
‘Carrow 💜

Good evening, friends –

Today is day 3 of the next steroid wean. Kayleigh started the day off very bumpy. She had a headache accompanied by nausea – a combination she hasn’t had since the shunt was revised. Thankfully, it didn’t last very long and she went on to have an ok day, but man, that particular combination always makes my anxiety creep up just a little.

Speaking of anxiety, Kayleigh’s is still very high. She is very quiet and pensive these days. She has moments where her spunky personality breaks through but those moments are further apart than normal. My continued prayer is that as she settles in to a normal routine her anxiety will lessen and go away.

Her stomach is still a constant problem hurting most of the day. She is also struggling with fatigue and increased leg and foot pain if she walks for any length of time. So many things that are just off kilter and just need to be brought back on track. The problem is I don’t know how to get them back on the track! All I know to do is to continue to pray. Pray for God’s guidance on how to help treat each symptom, and continue to believe that He is in control and His plan is perfect.

We would also appreciate you prayers for the rest of our family as we transition back to our new normal. Tim will be at work, Grace & Cole will be back at school. Kayleigh and I are taking one more week to try to tippy toe back into life. It is my hope that she will be able to at least go to school for a little bit this week, and that it will not cause additional anxiety or fear.

I keep finding myself returning to the Old Testament, reading God’s promises. No matter the situation, God promises to be there. Our job is to keep our eyes on him and allow Him to take care of all the details. Thank you Jesus, for giving your life, that this poor, broken sinner can be made right. That I can speak to the Lord or Lords. The peace that comes from knowing who is in control cannot be described.

Joshua 1:9
This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go.”

Psalm 34:4
I prayed to the Lord, and he answered me. He freed me from all my fears.

Psalm 34:6
In my desperation I prayed, and the Lord listened; he saved me from all my troubles.

Isaiah 43:2-3
When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. 3 For I am the Lord, your God, the Holy One of Israel, your Savior. I gave Egypt as a ransom for your freedom; I gave Ethiopia and Seba in your place.

We so much appreciate your continued prayers on our behalf. Much love to you all!

Until tomorrow,
‘Carrow💜