The days are 24 hours now as the nights come with fevers. We got to 103.8 last night which was better than the night before. No vomit either. The pain is very real though.
Yesterdays infusion went better. God do you hear me?! I truly have no idea if it went better. How do I know?! It’s Jacob who is the writhing pain. But from the outside observer it seemed to go better. They doubled all the pain meds. They can’t do that the first time as they don’t know how he will react. So he went into the infusion a bit drunk. He was chatty and doing what every five year old should be doing, talking about Halloween.
The pain hit later too. We made it to minute 11 before it “hits” out of the 36 minutes of the worst pain. He didn’t turn colors this time either. He didn’t even vomit. So better by my accounts. Jacob feels differently.
I now understand pain. Not the “ow” pain, but the pain that is so strong that words can’t escape your lips. It is an open eyed pain. True pain lives in the eyes.
He is still sleeping now. He hasn’t put a bite in his mouth sine that crepe which is now 36 hours ago. But you know…to be ”e” word.
I thought I was prepared for this part. I knew about the pain during the infusions. I had heard the stories, but I didn’t anticipate his reaction. Every kid is different in this regard. The side effects possibilities are endless.
Jacob’s strength is remarkable.
Leaving soon for chemo day.
I hope this chapter goes speedily and you can finally see some relief
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