Radiation 11 of 30 is in the books.
After out whirlwind trip home this weekend returning to St. Jude actually gives us an opportunity to slow down. As always, Kayleigh was eager to get to radiation – she missed her people. We also had our weekly radiation oncology visit today. Usually these visits are on Tuesdays but our doctor is out of the office for the next couple of weeks so we saw a different doctor. He was great and quite pleased with how Kayleigh was doing. He also asked if we had made a plan for phase 2 (after radiation). We told him that right now we are planning to do the trial here at St. Jude but that we were also starting to look into other trials and asked his opinion. He gave us a few things to look at and suggested that we get the ball rolling on information gathering and consults. So now we start the search – finding what trials Kayleigh is eligible for and if they are a good fit for her.
For me this is a daunting task. I’m certainly no medical professional. I sell steel for heaven’s sake! But if nothing else I am tenacious and this is my baby we are talking about. These folks better buckle their seat belts, I’m about to start turning over every rock I can find. Every state, every country, if they have a trial I am looking for it. And as I turn over each rock I am praying for direction. Praying for God to direct our path and to make His way perfectly clear.
Up to this point I have avoided the Internet and digging deeply into DIPG. I already know what doctors say is the prognosis. I know what it is we are facing. I haven’t felt it necessary to feed the gloom. These past few weeks, since diagnosis, I have spent my time reminding myself of God’s promises and God has been faithful to show up in all manner of things big and small. I guess you can say I’ve been gearing up. Now, as I begin to delve into all of this information – statistics, treatments, prognosis, life expectancy, I can easily see where Satan will use that to try to steal my joy and dampen my hope. Even today, after just beginning, I felt the effects of all the negative information. My hope wasn’t gone but I felt like I lost a little sparkle. So, I put the information away, held my sweet girl until she fell asleep and then went for a run on the elliptical machine downstairs (for anyone that knows me – insert gasp now – I ran on purpose 😳). While I ran I listened to my Chris Tomlin Pandora station and the Lord reminded me song after song that He loves me, to trust Him, that His plan is perfect – he refilled my cup. He is indeed a good, good father.
So, today was a GOOD day and tonight I will rest knowing that God is in control and He already knows what is coming around the corner. Please continue to cover all of us in your prayers.
Requests:
1.) Complete healing this side of heaven.
2.) Kayleigh to continue to do well with no bad side effects as we lower the steroids.
3.) Her energy levels to hold steady – she was more fatigued today than usual
4.) Her little heart and mind as she is hearing things about her treatment and she is working through it trying to process the information. We are praying for no fear!
5.) Cole! He has an ultrasound tomorrow at 1:30!! Pray that it goes well, they are able to determine what it is, that it is not serious, and will be easily treated. We are praying a hedge of protection around him!
As always, thank you for standing with us. We love you all very much.
Until tomorrow,
‘Carrow 💜
