September 21, 2016

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!