I know many of you have been waiting for an update today so I am posting earlier than usual. We had the scans early and the neuro follow up just before lunch. Then we had a date to our favorite cupcake shop, lunch (yes, in that order), and an afternoon nap just because we could!
I wish I was reporting a miraculous clear scan – but I am not. As I am learning, God’s plan is often different from my own. Kayleigh’s scans show the tumor is a little larger than it was in May. Obviously, we had hoped for some shrinking so that news is disappointing. The scan does show quite a bit more necrosis, which is dead tissue so that is positive. However, necrosis is still taking up space so that causes initially the same issues as active tumor. Also, the edges of the tumor still appear to be undamaged and active. Thankfully, her shunt is in place and is doing its job which relieves pressure and helps with symptoms.
So what does that mean? Medically, it is possible that as the radiation inflammation wears off there may be some shrinking and even improvement of symptoms. But, because the tumor still has an active edge the doctor believes it’s just a matter of time before it begins processing again. As you can probably tell from this report, we are dealing with an aggressive disease so it is important for us to continue treatment.
So, while this isn’t the most positive news it also isn’t a surprise to us. Tim and I both had the feeling that Kayleigh wasn’t done touch hearts and influencing people. Of course we would be over the moon to have healing right now, but I am thankful that the Holy Spirit prepared both of our hearts separately so that today’s news wasn’t devastating. We didn’t see the scans and become shattered, we heard the news and understood that God has more in store for us and Kayleigh.
So now we send all the scans off to the different trial options and pray for doors to open and God to clear a path for the direction we need to go. We have an idea of what we want to do, or maybe what we think is the right option, but we are praying that God will either clear the path for us to go – and let me tell you that will be a big deal if He does that because that path looks nearly impossible – or shut the doors clearly so we have no doubts.
Another blessing is that her doctor is on board to get her scans to all the doctors we want to send them to and that is a huge blessing. They are offering to FedEx everything we need to get answers as quickly as possible. As I have written this our Christian radio station has played Thy Will, We Will Not Be Shaken and In The Eye of The Storm… That isn’t a coincidence. God continues to conform us in amazing ways, confirming to us that He is in control. Even with less than stellar news we still are at peace.
What we need from all of you is for you to keep praying. Praying that the radiation does in fact shrink the effected area and that relief is lasting. Keep praying for a complete miracle. Her doctor tells us with what he is seeing today – for Kayleigh to ever have a clear scan – it would be “remarkable”. So – that’s your word to pray for specifically, pray for remarkable. And for the right doors to open and God to direct Tim and I clearly.
We love you all and are so thankful to have you on this path walking with us.
Until tomorrow,
‘Carrow💜
My daughter was diagnosed with a diffuse pontine glioma at the age of 12. I know what you and your husband are going through. I am here for you to lean on, to ask questions, or for anything you need. You are in my thoughts and prayers.