Feel trapped

So Amaey did have a drop in his counts. He is very neutropenic and he needed a platelet transfusion.

We came home after 7hrs at the hospital. Both Amaey and I were feeling very humpoof (Amaey's word for blah). It is Amaey's buddy's b'day party today and he is going to miss it. I can sense how bad he feels. He was really sad at night and I told him I felt the same way. He wanted a head massage to help him fall asleep and he was so cute, he started giving me a massage too. He said because I was humpoof I needed a massage too. He is just so precious.

This morning he woke up feeling blah and I told him to change his day cycle. I asked him to pick whatever he would like to do first thing, even before brushing and he ran off to play his new game on the playstation... I know that will make him feel special.

We started lockdown a week before his chemo. Then we were in the hospital for a week. We come back and we are in lockdown for another week to help him regain his strength and now we need to be in lockdown for another week so that we can avoid the fever and hospital stay. I know he feels trapped. I feel that sometimes. The routine of all of this kills me sometimes. I can't be impulsive and jump out of bed and say today I'm going to do something different.

This whole cycle is so weird. You feel guilty for not being there and you feel guilty for being there too much and wanting some space. I'm just scared of the weekend, that's what it is. I know Apurva and I are constantly going to stare at his face, look for signs check his temperature... it's almost psychotic in a way.