My son just finished MIBG therapy and it has been one of the hardest treatment . Mentally !! Not physically ! Does anyone else feel the same ? Especially because of the situation of the room and then to get out and be in isolation another 2 weeks .
We recently got out of 4 weeks of very strict isolation during bone marrow transplant. The first couple of days were hellish as Shalev had a terrible reaction to one of the anti-seizure medication.
It was a very long long month, I totally feel for you. The way we kept ourselves sane is by splitting the load 50/50 between me and my wife. Half the time I was there and half the time my wife was there. It really helped us tons.
Also, iPads with movies / games and ideally Internet help tremendously. Keeping the little ones entertained during isolation is key. If you are in a never ending day that just keeps on repeating it super painful.
Another thing that REALLY helped during isolation was having some photos hanging on the wall and more a “personal” touch on the room. It really helps you “take a break” from the hospital… and music, one of those portable USB speakers helped tons.
Wishing you tons of good luck, remember that this is temporary and hopefully will be over before you know it!