Days 5 and 6
You start to lose track of days and time. It is constant and there is always a challenge around each corner. Luke was on Thiotepa for the last 2 days. He had to shower every 4 hours while awake and every 6 hours while asleep. This means a 2 a.m. shower and bedding change each time and only wearing a gown. Surprisingly, it went as smoothly as it could have. The frequent showers help prevent skin burns.
Luke asked to go for a walk in the hallway. This was a big step! In his new world where everything is out of his control he needed to be in charge of these decisions. He was ready! We painted a picture for his door, we made slime, and made cookies out of what else...Play-Doh! We have played many games of "Go Pup." We are working hard at keeping his little mind busy.
Luke also started another chemo called Melphalan. This one brings on mouth sores. It helps lessen them if you eat an ice-pop while it is being infused. Um...Luke did NOT want an ice-pop and there was no way he was going to eat one! We tried everything! The Lovenox shot continues to be very tramatic. Luke screamed for 45 minutes this morning.
We are sitting tight as we know that this is just the calm before the storm. I miss Grace terribly and hold on for the moment my little boy is free of this terrible disease.