our leukemia story part 4

well james bladder had finally healed and it was time to have the cathada and the super pubic tube removed, once that happened he was released and came to stay with us across the road along with his 20 (aprox) different medications and his nasal gastric feed, now that he was staying with us we had to do all the medications ourselves, (we still went across the road for blood tests every 2 days)i had already been practicing with his meds when james was in hospital and i had already been giveing him nasal gastric feeds for the last few months prior so i was firmiliar with all of that, it was very tiring as all of his meds needed to be like clock work (we had a little beeper )and about half of them we would have to wake up in the middle of the night to give him, also his evening nasal gastric feeds( james had a nasal gastric tube which went down his nose into his belly and we had a little machine that we attached his liquid food to and it would slowly pump it into his stomach we had to do this every 2 hours) and his evening feed would go until about midnight so we would hear it beep in the night then we would have to get up and take it of and hook it up and flush his tube,his feeds were always very slow other wise it would make him vomit ( and sometimes he would vomit after we flushed his tube if it was done to fast and we would have to give hi the feed all over again) as his stomach was still very fragile (all the lineing had come away from the radiation and was slowly healing) james first started to stop eating when he was haveing radiation then it completely stopped and it was a good year before he started to eat again after the transplant (haveing a bone marrow transplant also changes the sensations in there mouths ect)slowly the medications were reducing and james started to eat a little i would sit with him all day encouraging him to take a bite of everything i could (man it was expensive also) but he came around in the end and after about a year he was back onto food full time, by this time we had gone back home and was going to princess margret hospial once every 2 weeks for checkups and now nearly 3 years later james is on no medications except for 1 that he has recently started which is called growth hormone which  he has just started about a month ago, they told us before his radiation that it would MOST probably affect his production of growth hormone but that it could be treated later on, so about 8 months ago he had his first endocrinolgy apointment and they found that he had gone of track with his growth so he went in for over night observation to check his production and found it was in adequate so an apllication for growth hormon for james was put in and it was accepted so now we give james 1 needle everyday till he is 16 years old) but apart from the needle he has no ill side affects and still attends a public school and is now a healthy happy boy and is cured, we are all very happy and grateful that we still have james here with us, i personally felt like e were never going to go home  

here is a pitchure of james today aged 6