I know you all ave been waiting for an update on Kai.
The truth is he is not doing well.
After leaving the hospital last week he has had a pretty ruff time. We were only out one day but it felt like forever because he was so miserable. I was so worried about him, and I felt like our week inpatient gave us no answers. I actually couldn’t wait to get back to clinic Thursday morning.
Of course the plan was to bring him in see how he was doing since going home, and to give him his IV dose of Avastin. Seeing how bad he was the day before I really wasn’t sure giving him the chemo was the right thing to do. My plan was to go in so they could check him out but then tell them I wanted to hold the chemo.
After seeing him, his NP came to her own conclusion that he was not up for chemo. I don’t know if his team had already discussed all this before we came in but the conversation quickly went from holding off on today’s infusion to stopping ALL his chemo.
Honestly I had been thinking the same thing.
It’s obvious he has been in pain and it has been getting nothing but worse. The past few months each month he was worse than the month before, then we could we him declining each week. By Thursday He was doing worse than the day before.
He can hardly do anything these days. With all of the tests and meds they tried while we were in patient, we left worse than when we arrived.
The chemo isn’t helping him. Not just this new chemo, but the last chemo protocol and the one before that. At this point it is pretty obvious his tumor is not responding.
We are not giving up on Kai but it is most important to me that he is as comfortable as he can be right now, so we are shifting focus.
His team suggested we take a few weeks off chemo and see how he does. Keep on top of his pain and allow him to rest. If he somehow bounces back we can always start back up with treatment, but at this time it is just to much for his little body to take.
So what does all of this really mean???
It means that Kai has been able to spend the past few days visiting with family and friends and for the most part was comfortable and content. He had a little last minute birthday party for him, that he happily slept through held in someone’s arms all day.
It means we are working with the Pediatric Advanced Care Team on making sure he is comfortable and happy. We are continuing with his complementary care, acupuncture, massage, reiki, herbs, music, etc.
The past few days have been up and down, but today he is doing well. He is alert and comfortable, which is all we can ask for right now.