Since we are finished with radiation, we've been working on adjusting Caleb's medication schedule to something that works a little better for us. We have him at a 3am, 11am, & 7pm schedule now. Since our appointment on Thursday is at 10:15am, we're hoping to have his labs drawn when we first get to clinic instead of having to wait around after our appointment so it's close enough to his next dose.
His school's Christmas party is at 1:30pm that afternoon & they really want Caleb to be there, so we are really hoping to be done with labs & the visit with the doctors by noon so we can get to the party on time.
We also wanted to let everyone know about a couple developments here. His Occupational Therapy (OT) evaluation was last Thursday & he made it through about 45 minutes before he shut down on us and refused to even try anything else. His frustration level is mounting & he is having more meltdowns than normal. We've also noticed this past weekend that Caleb's gait is getting more unsteady again. He's getting more clumsy again & is not able to run much any longer. He's also not using his right hand or arm as much any more. He's having more difficulty with using utensils in his right hand & can't do small buttons or zippers. He's also having difficulty opening our back door to let the dog out.
When I was researching information a few weeks ago, I kept running across reports from doctors saying that kids with DIPGs will seem to do really well with radiation treatment and then go downhill a couple months after it is finished. Of course, this is pretty disheartening news. I have to keep reminding myself that these other kids they're talking about were not on our treatment plan. They were only getting radiation. They were not getting the additional medications Caleb is getting.
We are intensely praying that these new developments are a setback caused by swelling of the tumor due to the radiation treatment itself. This next month of waiting for the next MRI is going to be hard for me.
Please continue to keep our entire family in your prayers. I am having a bit of a difficult time lately staying strong. It hurts me to see Caleb like this and I'm struggling to keep from crying in front of him. I don't want to upset him. It's getting harder & harder to hold it together sometimes. I know God is in control no matter what!
Thank you for your positive prayers!