Induction Day 14

A lot of stuff happens in a few days but we still don't know as much as we'd like.  Friday we went into the clinic for platelets and leg needles and Nathan did wonderfully well.  He has started to put on his own Emla cream, and take it off when we get there.  He breezed through the leg needles again Friday so at least there is a positive there.  They informed us that we'd have a video conference with Dr Lewis on the 21st of July.  That was still two weeks away!  We wanted, and still want, more information before then as we are being asked to make major decisions based on little to no information and that is not sitting well with us.  Hopefully they'll get something else arranged before we end up just driving down there and demanding to meet.

On Saturday I ventured back up to Carrot River where friends and family put on a benefit for Nathan and our family.  They had wonderful weather, a great golf course with 112 golfers participating, a delicious supper with awesome entertainment.  All those superlatives aren't enough to describe the people though -everyone there was just simply beyond words.  From my family and friends who set up both the farm yard and various golfing events, to all the people that donated items or their time, to the people who worked the benefit and finally to the people stepping up at the auction - the response was overwhelming.   The band was great and the party was in full swing when I left. You all know that you played a big part and please know the heartfelt gratitude going from our family to all of yours.   Incredible!

While I was in Carrot River golfing Shelley tried to have a "normal day" with the boys.  They did a kid project at Home Depot, some crafts from Michaels and picked up some food to have a picnic in the park. Nathan was feeling well so had to use the opportunity while it was present. A good afternoon was had and they had a movie night in the evening.  Shelley said it was a great day.  On Sunday we got home early in the afternoon and I set up the pool for the boys on the front lawn.  They had a blast in it.  Nathan tends to overdo it a bit, so it is a real balancing act for Shelley and I to get him to stop something while he is still good vs waiting for the lower energy and poor feeling he gets when he gets too far into an activity.  This evening he had to have a rest but it wasn't very long before he was wondering what his brothers were doing and was back outside taking part in some badminton.

Tomorrow is a longer day at the clinic.  Nathan will be getting his triple intrathecal therapy, leg needles, and vincristine.  Oh did I mention we are onto drug number 13 now?  He is now having Nyastatin to help with sores in his mouth once again. We continue to pray that Nathan's body will handle the treatments, that one of us is a match and that we will have a sense of direction soon.