Well, it has been a very busy day. We were under the impression when we came here that Kayleigh enrolling in this trial was a done deal. Just a matter of signing some forms. It seems, however, that it’s not quite that simple.
Kayleigh has a battery of tests to be performed before she is deemed eligible and so far today we have had two red flags pop up. First her blood pressure is a little too high, and second, her CO2 levels are listed in the “critical” range. One of the drugs has the potential to increase blood pressure so she will be monitored closely. As for the CO2 level, her doctor thinks it’s the tumor pushing on nerves tricking the brain into panting instead of taking deep breaths. The only thing that can be done for that is try to get the tumor to shrink and quit pushing on those nerves. Of course that is our goal for the whole thing, get it to shrink, it’s just so hard to figure out how to make it happen.
So, Dr. R thinks our best bet is to get started treating this thing. The only problem is we aren’t 100% sure that Kayleigh is eligible yet! She has 3 more tests tomorrow Echocardiogram, EKG & chest X-ray. They are also going to do a follow up blood draw to check CO2 again and another blood pressure check.
Kayleigh also had a much longer MRI done today. It was almost 1.5 hours long and as always she was a champ. Still and quiet through the whole thing. Oh how I wish I could say the Lord chose miraculous healing but that was not His answer today. Kayleigh’s tumor didn’t show any “vast” changes. It showed more necrosis which really isn’t a good thing – even though it means more dead tumor, it also means more dead stuff taking up valuable space. It’s possible that there has been some progression but there wasn’t enough change to determine that. My prayer for today’s MRI was for “something good”. I didn’t have anything specifically laid on my heart, just the request for some good news. And while all of that wasn’t particularly wonderful news there was some good to be had. First, the tumor had not changed that much. That has been a big concern due to the headaches so that is a very good thing. Also, her ventricles, while slightly larger than last time are actually right now at the “ideal” size. Frankly, when we are talking about Kayleigh, anything medically that can be classified as “ideal” is a wonderful thing!
So, while I wish I was reporting more glorious news, I am reporting some good news. And yes, I could easily look at those small things and back at God and say “Really? That’s all you’re going to give me?” But I am choosing not to respond that way. I am choosing to say “thank you Lord for these small blessings.” I am choosing to trust that His plan for us is perfect. I am choosing to keep my eyes on Him and not what is going on around me. Because HE is where my peace comes from.
Would you please pray with is that if this is indeed the right trial for Kayleigh that the Lord will work out the details? Pray specifically for the headaches to stay away, for her blood pressure to be normal and for the tumor to ease up and allow her to breathe deeply.
12 Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. 2 We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith. Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne.
“My thoughts are nothing like your thoughts,” says the Lord. “And my ways are far beyond anything you could imagine.
Nap time with my little monkey!