Things are ramping up now

Just a quick update to let you all know how things stand for us at the moment. We are back and forth to the hospital now getting all sorts of tests done so that a baseline is set. They are things like heart echo's, lung function tests, kidney tests, ct scan etc. They do this so they know how well his major organs are functioning before transplant so they can see any damage that might be caused by the transplant itself. He has been 3 times this week and next week is our last week at home. They try to get the kids to stay out of the hospital altogether in the week leading up to transplant but unfortunately Seth has to go in for a lumbar puncture and bone marrow aspirate on Wednesday. He is still doing okay at the moment - no more bugs seem evident.
Sienna did very well with her blood test. She was so nervous leading up to it but she was determined to be brave and not a tear was shed (she did have the numbing cream on). She was so proud of herself. Her first words after congratulating herself immensly for a job well done was "okay mum, now you have to go and buy me a present and a chocolate because I was so good". Needless to say she bought herself a little gift and packet of smarties. Our conversation on the way home was all about how I had to tell everybody just how well she did and how she didn't cry etc etc and I wasn't allowed to forget. How could I when she reminded me every 5 minutes!!!
This gives me hope that she will do well when it comes time for the bone marrow harvest. We will probably have to shower her in gifts and praise but she will deserve every bit of attention that she gets. She is a different blood type to Seth, so they will have to remove the red blood cells amongst other things from her blood in the lab before Seth can get the stem cells. The only change this makes is that it will be a little later in coming to Seth and his blood type will change to Sienna's. We told him he is going to end up liking fairies and everything pink like Sienna. It took him a while to figure out whether we were pulling his leg. We had him worried for a bit that he would turn into his sister.
Seth is admitted on 6th August and won't be out until he is well again after transplant which will God Willing be around the beginning of October. Nerves are now kicking in for me but onwards we go - there is nowhere else to go.

We have a date for transplant!!!

13th August - once again you wouldn't want to be superstitious! The radiation is booked for the 6th - 8th August. Then he will have some very strong chemo until the date of transplant. Seth's hair is growing back as he hasn't had chemo for some time now and it so soft like peach fuzz and it is coming back quite dark. He will lose it again with the radiation and chemo coming up. For now it's a novelty with everyone touching his soft baby hair. Sienna is having her needle tomorrow - neither of us is looking forward to that little adventure! She promises me she will not scream the place down... I have my doubts! We took Seth to hospital on Tuesday for a check up. The doctors were very happy with his recovery. The shingles are almost gone now. They decided it was time for chemo so we were back in on Thursday for a 6 hour dose. It made him a bit tired and nauseas but as always he is full of beans now. It is his birthday today and we are having homemade pizzas as requested by Seth for his birthday dinner and a walk down to the park if the weather warms up a bit. A simple and quiet birthday, but he seems content with that. Seth isn't required to go back to hospital until Friday so he gets a bit of a break this week from the back and forth trips. We just need to keep him well for a few more weeks:)

Random temp

We have been enjoying a lovely time out of hospital. We are visiting twice a week for check ups. Seth's shingles have dried up and seem to be recovering well. The pain has gone thanks to antivirals. Last Monday Seth got a low temp of 38.1 so we had to return to hospital for admission and iv antibiotics. Fortunately it didn't turn into anything and the temp was a one off. We were allowed home by Thursday night. Seth is now coUnting the days until his birthday and enjoying time with his sisters during the school holidays. Things feel almost normal at the moment and it is very nice. Transplant is still going ahead at the end of July as far as I know. Seth has had negative RSV test results every week so there is nothing to prevent the transplant any further.