Monthly Archive: September 2016

Good evening friends! Tonight’s post is going to be brief because honestly I’m just exhausted!

It is so wonderful to be home but hard at the same time. Jumping back into sports, tackling school work, trying to figure out what to feed this busy family that is compliant for Kayleigh is a little daunting. Toss in laundry, house keeping, and going back to work and you’ve got one very tired (slightly frazzled) mama. So, if you have messaged me and I haven’t answered, please know I am trying to get back to everyone, sometimes I’m just not quick!

Even though things are crazy busy I do have a little bit of a Kayleigh update. We decreased the steroids again! Not much – we went from .5 mg am & .5 mg pm to .5 mg am & .25 mg pm. I know .25 mg is a tiny drop but even that little bit is enough to cause headaches. Today is our second day of the decrease which means the next 3 days are where we will be watching her closely for any bad side effects.

Her stomach is also slightly better today. It was actually pretty good this morning until about lunch but it went down hill from lunch on. Not as bad as it has been but bad enough to have her make repeated comments.

Prayer requests
1.) Healing this side of heaven
2.) steroid decrease to work with no head aches
3.) stomach to feel better
4.) her right side to strengthen
5.) the tumor to shrink a little more each day

We are noticing obvious right side weakness in her right arm, hand, fingers, leg and foot. That is not unusual due to where the tumor is pressing but it would be wonderful for her to start regaining some strength. She has always been right handed but she has begun to favor the left hand much more.

Thank you for your prayers!
Until tomorrow,
‘Carrow💜

Happy Friday!

I hope this post finds you all doing well. Our crew is holding up. We have moved everything from our little two bedroom apartment in Memphis back home. It is currently all unloaded from our cars into the middle of my living room and all over the kitchen. If my calculations are correct we should be able to find everything a home by 2027… The year Kayleigh graduates from high school!

I don’t know that I have ever explained what the current plan is for Kayleigh’s treatment so I’ll take a minute to fill you all in. We went back to Memphis at the end of August to enroll in an oral chemo trial that is very new. The doctors tell us that this is not the cure but that they hope it will help, slow down, shrink, the tumor while they are still researching. This trial was not our first choice but we prayed that God would direct our steps and He did July closing every door but this one. Based on Kayleigh’s most recent scans we are quite thankful for God’s perfect guidance and are praying that the miracles will continue.

So, once we were approved for the trial we had to stay in Memphis for a month in order for Kayleigh to be watched for any issues. This past Wednesday was the end of phase 1 of the trial so we were released to go home. Kayleigh can continue to take the two oral chemo meds for as long as they appear to be beneficial. We will return to St. Jude for scans mid-October and then we will start going every other month as long as things are going well. On the months we don’t go to St. Jude she will have labs done at the affiliate office in Huntsville. But that means when we finally get to October she only has to get stuck once a month – thank you Jesus!

So, our prayers for Kayleigh are
1.) We can figure out how to get her stomach feeling better.
2.) The tumor will shrink a little more each day.
3.) For anxiety to fade away and our bold, brave girl to feel brave again.

I can’t thank you enough for your prayers on my behalf. I was very concerned that I may have had strep last night but today was much better. The sore throat is nearly gone. The back is a little tricky but it’s ok. I’ve had wonderful offers from some
Great people for massages to help. Thank you all so much for taking care of us.

Finally, we have had an awesome day of support. Our very special friend, Andy Olive, is on a cycling quest. He began at the AL/TN state line this morning and is riding his bicycle all the way to gulf shores over the next two days!! Kayleigh was so excited to get to see Mr. Andy this morning. he rode through her school’s parking lot! She felt much better after having a moment to talk with him. She was VERY concerned that he wasn’t going to have anywhere to sleep, rest, or have food to eat. Andy reassured her that he had those things planned out so Kayleigh felt much better.

We also had numerous friends send us pictures of tonight’s high school football game. It was an away game for us in a town quite a little ways from here. Not only were our guys still sporting their purple Kayleigh stickers on their helmets, but the opposing team had a huge Prayers For Kayleigh banner. As a parent is it impossible for me to tell you all just how much the amazing support means to us. It fills me with gratitude and joy that cannot be described. Please keep the prayers coming. God has big plans for this little girl, I just know it. Plans for good and not disaster to give her a future and a hope (Jer 29:11)!!!

Until tomorrow,
‘Carrow💜

Wow… Thank you prayer warriors and encouragers for your outpouring of love and support for our good news! Kayleigh’s never had a post take off quite like this one and it is amazing to see so many sharing our joy and praising our Lord! Just one more time that the Lord confirms we are on the right path.

Of course with every victory we are immediately hit with an attack from the enemy. The bigger the victory, the bigger the attack it seems. But sorry devil, you can’t steal this joy! We would however very much appreciate the prayers of our prayer warriors. We are being attacked from multiple fronts right now.

Kayleigh is struggling being home and away from the safety net of St. Jude. It is where she feels the safest and has Tim and I 24/7. As we return home she is very much worried about both of us returning to work and not being around for her. She is worried about returning to school because she doesn’t want me to leave her at all. Being separated from me for even the shortest time highly increases her anxiety. She is also worried about school because she is very self conscience that right side is weaker and she needs more help with some of the most basic things. So many big worries for my little girl. She is also still battling constant stomach pain and we need it to stop.

I am also on the receiving end of the attacks. My back has been a mess since I spent a week sleeping in a sideways “u”, in a hospital bed, in Miami back in July. My chiropractor is great but it just keeps on going right back which makes sitting, standing and laying down difficult. Not good. But to top that off I have developed a very sore throat today. Strep is my fear since that has been going around. But of course my bigger fear is that if I am sick that I will share it with Kayleigh.

So tonight as you head to bed would you please pray specific prayers for my girl and I?
1.) Complete healing this side of heaven.
2.) Kayleigh will settle in to being home and that we will find ways to help alleviate her worries.
3.) That we will find the right combination of medicine, supplements, foods, oils, whatever it might be to ease her constant tummy trouble.
4.) I will wake up with NO sore throat in the morning.
5.) That my back pain will ease.

I know the devil would like to steal our joy from the beautiful victory God has given us but we will not give him that pleasure. We are going to continue to praise our Lord and build our defenses. Thank you precious friends for standing with us and holding is up. Much love –

Until tomorrow,
‘Carrow💜

John 10:10
The thief’s purpose is to steal and kill and destroy. My purpose is to give them a rich and satisfying life.

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

Hello friends. I’m sitting here with my phone trying to figure out what to write tonight. Honestly, I am so shell shocked I am having a hard time putting my thoughts together. That might not sound like a good thing but it is. We got good news today… We. Got. GOOD. News.

We got good news!
We got good news!
We got good news!
We got good news!
WE GOT GOOD NEWS!

That is what is playing in a loop in my head. Be still my heart. For the first time in four months I sat down in a doctor’s office and they had nothing but positive things to say. I didn’t have to look for something to be thankful for. Her oncologist was even all smiles and full of promise – thank you Jesus just doesn’t even begin to cover it.

I really want you guys to understand my state of mind so I am going to back up to this morning. I always go with Kayleigh into her MRI. I always spend the time praying. Today they told us it was a 1.5 hour MRI so I grabbed some of the magazines in the waiting room. As the scan started I started flipping through one of the magazines and something I saw flipped a switch in my head. What was I doing? This was my prayer time. This was important prayer time. I had gotten complacent! I immediately pushed all the magazines away and started praying.

Asking the Lord to forgive me for getting lazy and not preparing for battle as I should have been. Because that is what this is – a battle for my child. And as I prayed the sermon from Sunday ran through my mind – you have not because you ask not. And not just ask, but ask for specific things.

So, I started asking. I started out shooting for the moon, asking for miraculous healing – but that prayer just didn’t feel quite right, I just kept getting the feeling that wasn’t the right prayer because God wasn’t done with this story yet. So I sat and tried to remember the previous scans, what I had seen and what requests I would make of God. I settled into 3 specific things

1.) that the tumor would be smaller
2.) that the spots that looked like brain bleeds last time would be better
3.) that Dr. R would have a reason to use the word “remarkable”

Those were my specific prayers. And here are God’s answers…
1.) the tumor appears smaller. Not only is it smaller but we could actually see a little bit of normal tissue in the ponds (that’s the part of the brain stem effected). It also appeared to have necrotic (dead) tissue around the outside in places. Not only is the tumor smaller but the area of inflammations were quite a bit smaller which is like swelling that has gone down so that alleviated pressure too!
2.) on the last scan there were quite a few noticeable areas of what they though we’re bleeds. I could see 4 on that scan easily. Today there were only 2!
3.) Dr. R brought up the images of Kayleigh’s ventricles. Last time there were very bold, bright white areas showing that the ventricles were a bit large. Even with her shunt in place she still had quite a bit of fluid that wasn’t draining quickly. Today those ventricles were just ordinary slits. We looked at them from different angles where he paused and pointed out the huge difference and said “that is quite remarkable”. Quite remarkable… Oh thank you Jesus!

Now, none of these changes are huge. Her tumor is still there and it is still quite large. But Dr. R reminded us that it has only been 4 weeks between scans and that is not a lot of time. So he was really looking at all the small things to get a sense of how things were going. The best thing he said today was that everything he saw looked like things were going in the right direction. Everything. Not everything, but… There was no “but”. It was just “everything is going in the right direction”.

I wish I could find the words to describe the feelings inside me right now but I can’t. Nothing comes close. There is just an overflowing gratitude in my soul. I am so thankful that I have a God that hears, directs and answers my prayers. Who am I that he would hear me? I know I do not deserve it on my own merit. It is only through the blood of Christ that I am able to approach the throne of God Almighty.

Today we rejoice. It is a small victory in this war. I know we still have many hurdles ahead, but my God is good and He is bigger than DIPG. So we will
Keep the faith and praise Him for the miraculous blessings He has given us!

I think our Kayleigh verse is perfect for tonight as we celebrate her future and hope. And I included verse 12 as well because today I know when I prayed, He listened.

Jeremiah 29:11-12
11 For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. 12 In those days when you pray, I will listen.

Until tomorrow,
‘Carrow💜

Enjoying a little more time with Anna

Scans… The left is 4 weeks ago, the right is today. The structure in the center that is white is the ventricles. You can tell on the right there is substantially less white. Thank you Jesus!

Hello everyone! It’s been a busy day here in Memphis. As we prepare to head home we are packing our days full of fun things and precious memories.

Kayleigh only had PT this morning so we had all day to play. We really should have been packing – but hey, there were way more fun things to do, so we did! Our sweet friend Anna has been in patient since Friday receiving her second round of chemo. Today, they moved all the patients from the main hospital to the new patient floors so we went to visit and check things out. And man-oh-man was it awesome!! St. Jude has made everything as kid friendly and interactive as possible. The rooms are big and even have attached rooms for the parents! The rooms have mood lighting and awesome pictures – it is incredible. We spent most of our time in the imagination room which had a screen that went up the wall and onto the ceiling and had interactive games the kids could play.

Both Kayleigh and Anna battled stomach pain and fatigue all day but neither of them wanted to stop playing or just kind of being together. There is something to be said for having a friend that just “gets it” and even though they don’t really express that in words you can just see how easy they are with one another. Tim and I are so thankful for Mike and Jodi for the same reason. We all understand what we are up against and we all know there is nothing we can do. All we can do is watch our children fight, pray, hope, and believe in miracles. You might think that would make for a sad friendship but you would be wrong. It makes for a fantastically easy friendship. One where if we all want to order dessert for dinner we will because we understand just how precious time is. Or stay out late on a week night. It’s just one more of those things we thank God for.

Kayleigh’s stomach was back today, worse than it has been in a few days. I believe it is from the preventative antibiotic that she is taking. Evidently kids in this situation are particularly susceptible to a certain kind of nasty pneumonia. Thankfully, if they take this antibiotic three days a week it has shown to keep it away. But I realized today her particularly bad days coincide with the antibiotics. Ugh. Her doctor hopes that as we get off the steroid that it will help and she will be able to tolerate the antibiotic better. I am hopeful that we can figure out how to dose her stomach coating Medicine’s with the antibiotics in order to keep the stomach from hurting. Would you please pray specifically with us that we would figure out how to protect Kayleigh’s stomach and that the antibiotic would not hurt her stomach?

I am happy to report no headache today. That is truly wonderful news! If we can keep her feeling good the. We will look at another decrease this week. Each baby step down gets us closer to the goal of being done with these. We are going excruciatingly slowly on the decline just to be safe. If all continues to go well we hope to be done in 3 weeks. That’s another thing to pray for specifically!

Finally, tomorrow morning (Wednesday) at 10:15 CST Kayleigh has another MRI. We are praying big prayers for something remarkable. For good news of some sort. Signs of healing. My prayer for Kayleigh tonight is from the verses below.

Isaiah 53:4-5
4 Yet it was our weaknesses he carried; it was our sorrows that weighed him down. And we thought his troubles were a punishment from God, a punishment for his own sins! 5 But he was pierced for our rebellion, crushed for our sins. He was beaten so we could be whole. He was whipped so we could be healed.

Until tomorrow,
‘Carrow 💜

This floor has a space theme

The next floor was aquarium themed!

All the girls

the cool screen 

Did I mention that the screen was big?

The bridge at night from the top for Bass Pro