Doing well and pressing on with more chemo

A HUGE THANK YOU to Ascot Sunday School over in W.A for the gifts and especially for all the work that went into the scrapbook. What an incredible way to get to know you all and to know that Seth is thought of so often. Seth is recovering well from his respiratory infection. He finished sitting in his plastic tent yesterday and both of us were extremely happy. He isn't a big fan of the tent but it has worked its magic and he improves every day. The nurses gave him a magic box because he had been such a good patient for them. As Seth is no longer eating or drinking, the doctors have decided to put him on a treatment called TPN (total parental nutrition). This is two bags of fluid - one is white and looks like milk - this is all the fats. The other looks like diluted apple juice and contains all the sugars and other nutrients he needs. Seth's counts are on the rise and he was given a gate pass on Sunday and Monday in between his time in the tent. Sunday Brett took him out to play a couple rounds of putt putt and they got back just in time before the rain set in. I caught Seth's infection and spent Sunday and Monday resting in the unit as much as possible. Yesterday the doctors did a lumbar puncture, chemo into his spinal fluid, bone marrow aspirate and nasal gastric tube. Unfortunately when Seth woke up he was in agony with the tube. This is a kid who doesn't make a peep when he gets the most painful of needles, didn't make a noise when he slammed his finger in the door and ended up with a massive blood blister under his nail and he was sobbing in so much pain. The nasal gastric tubes are supposed to feel uncomfortable and a bit weird for a couple days but not painful. They had to give him some strong pain relievers then they xrayed him to make sure placement was correct. They had in fact put the tube in too far. It had to be pulled out 5cm's. They had taped it incorrectly to his face which caused further pain as it moved around too much and it looks as though whoever did it was very rough and caused some trauma to his throat and nose. What cost is it to use gentleness? I am so cranky. As if he doesn't have enough to deal with and this finally broke his spirit. For the very first time in two years I saw him give up. I realize just how much his strength gets me through things. I wish for the umpteenth time I could take this away from him. So, things move along in here despite what happens and he was hooked up with a chemo called methotrexate last night. In the past he hasn't really tolerated this one well so I just hope that he doesn't end up vomiting as the pain would be enormous due to the trauma in his throat. Also some kids are known to vomit up their ng tubes - that is all he needs. I am going to post some pictures soon. Just having trouble with the quality an iPad camera gives.