Ethan had another visit to Children's this morning, this time with his Nephrologist. I knew going into this appointment that they were considering adding a chemo drug to Ethan's regime. I made sure I talked with Ethan about this possibility before we went so that he wasn't blindsided when we saw the doctor. He surprised me and actually said he would like to go on it again, if it meant that he could get another few years off prednisone. Unfortunately it isn't that easy and going on chemo again has significant risks, and at this point they have decided to wait before they try him on anything else.
They are also waiting to find out the results from his bone density test that he had last week. This will also determine what medicines they will be able to use if he relapses again. Ethan's arm has officially healed, after 10 long weeks. We are so very happy that he seems to have full mobility and no pain. His arm is very skinny ( incredibly hairy) and weak as he lost a lot of muscle and strength. The doctor suggested he go swimming to build up strength.
On a positive note, since Ethan has been taking 1000mg of Calcium a day he has grown an inch and a half in 6 weeks. AND that is with him being on prednisone!!! Normally he doesn't grow at all while on the prednisone but only when he comes off. His Nephrologist was very happy with that and he took that to mean that the prednisone isn't affecting his bones if he is growing while on it. I have to say I don't agree with him, I think it has everything to do with his taking 1000mg of Calcium a day that is helping him grow. The steroids slow and suppress growth, but I suppose that they are hesitant to say it is the Calcium since they don't currently advise their patients to take it. Our local pediatrician spoke to a bone specialist and she is the one who suggested Ethan take the Calcium. I am SO glad we did. I probably should have started years ago, but I can't go back now....
So for now the plan is that we reduce Ethan's dose by 10mg every 2 weeks. He has about 6 weeks left and then we once again wait to see what his body will do.
