our leukemia story part 2

okey well after we found out  james diagnoses (acute lymphoblastic leukemia) they wrote up a protocole for him (chemo plan) and got started with the treatment

hubby drove up to princess margret hospital from our home in albany with our other two children we had at the time our eldest karlee who was 2 and a half and our youngest katelin who was 6 months old, we were asighned a social worker and she took us over the road opposite the hospital to the ronald mcdonald house to show us around and where we were going to stay, all i remember was being  shocked at how huge it was and that we had a place to stay as i hadn't even thought ahead that fare, so that was were we stayed pretty much for the next 4 months , after the intitial 4 months of heavy chemo we went on the maintanace program which allowed us to go back home (which was 400 kms from the hospital were james was recieving treatment) and come back to the hospital once a month for a check up and his lumber puncher (james had a monthly lumber puncher which was were he was put under anathetic and he would have chemo inserted into his spine aswell as have some fluid taken out for testing) with the program we had to give him chemo tablets daily and then every month he would have oral steriods for 5 days i can't remember all the dosages exactly,(the steroids made him bloted, eat like crazy and really fussy and go crazy, he would kick things and go into tantrums)  but then about 3 months into james treatment he kept catching viruses ect and getting sick so we stopped maintance treatment for 2 months, but the doctor was getting worried and got him straight back on it and sure enough 2 days after he re stared maintance he had relapsed we were devistated our lives had just started getting back on track and life was finally comeing back to some kind of normality then this happened  we were so upset this had happened and blamed ourselves for stopping the mainance program while he was sick but the doctor had agreed with us at the time that he was struggling with the viruses and the chemo wasn't helping but in the back of my mind i was kicking myself thinkin that i should have kept it up even though he was sick, but the fact was that he may have relapsed anyway we will never know, (with boys they need to be on maintance chemo for 3 years then treatment is completed, how it works is that even though after the initial chemo has apparantly rid him on the leukemia there could be a small amount of the mutated cells left in his blood that they cannot detect  in his blood so what they do is randomly kill of there blood cells over a three year period as they have found that this gets rid of any free flowing mutated cells) well after that shocking news we packed up and back to perth we went and back to ronald mcdonald house we stayed this time it was much worse, and to top that of we had our suspitions 1 week prior to us finding out james had relapsed because his eye lid had started to batter alot so we rung the doctor and he told us to go to our local hospital for a test it came back negitive but before we new this and while we were waiting for those results we pulled over to speak to a freind that we saw on the side of the street they were haveing a garage sale and we  got out to tell them about our worries about james and we were only 2 mtrs from the car when we turned and saw our car rolling backwards down the hill with all our children  in the car and it was speeding down the steep slope everyone was running after the car i managed to get my hand in the window and turn the wheel enough to get the car to go over the curb and slam into a tree luckily all the kids were fine thank goodness but our car was recked, we had nightmares for months after that i still get upset when i think about what may have happened, all i can say is it will NEVER happen again, so a week after this happened rob and james had caught a bus to perth for his lumber puncture thats when they found out he had relapsed so the kids and i then flue up to perth on the plane

so then james was put on a higher does of chemo than he had ever had before and continued on the high dose until he had his transplant, because james had relasped it was highly recomended he now have a bone marow transplant as he was now high risk, we all went about haveing ourselves and our other children tested for compatability for the bone marow transplant we all had our blood tested and we waited a long 4 weeks for the results it was very stressful, then when we got the results none of us were a match so we then had to go on the world wide bone marrow registrar to find a match, we waited another good month before we herd anything, then we got the good news there were quite a few good possibilities so they narrowed it down to a man in NSW's he was a perfect match it was such a long process from there we waited another good 7 months till it was all organised and a date was made for the transplant  we had a couple of scares were the final tests of the doner were done to find out if he had developed any diseases since his last blood test(eg aids hep b anthing like that) and it came up positive for hep b we paniced, it was ordered he  do the test again as it may have been a negitive positive and thank goodness it was, so it was time to go a head, 1 week leading up to the transplant james needed to be prept he had full body radiation it was really scarey they destroyed every blood cell in his body and his was kept in a special flow room and everything was kept steralized and our hands were red raw from being cleaned and strelized everytime we touched something and went in and out of the room, did i also mention that i was 8 motnhs pregnant with thomas at the time who was VERY unplanned

to be continued.......