2 steps forward,1 step back.

Seth had his bone marrow aspirate last Wednesday and the results show no cancer visible. After Seth's visit to hospital on Wednesday we were told to cease his last remaining steroid. Happily this was done but on Thursday Seth complained about having ulcers in his throat. I put it down to his ng tube rubbing on his throat. Friday morning he thought his throat was closing over and was in a fair bit of pain. Friday night he had one bout of diahorrea but no temp. Saturday morning he woke up with a temp, feeling nauseas and sore throat. I took him to Campbelltown hospital which is the closest to us and what the doctors at westmead request that I do so he can get medical attention earlier. As usual a battery of tests were taken and his symptoms were trying to be managed as best as they could. His diahorrea worsened, the soreness from his throat came up into his mouth. They were red swollen angry looking spots and he continued to vomit. On Sunday, he was having hallucinations with a medication that he has had thousands of times with no side effects. He thought it was funny because my hair would turn purple, I would get old and wrinkly, my eyes would glow, my face would grow fat or long, my nose would turn into a pig nose. Thankfully it happened to anyone's face and it wasn't just me. It lasted about 15 minutes and then was gone. It happened again later that day with the same meds but hasn't happened since. Seth has some strange things happen to him! On Monday, he seemed to be improving a little and the docs were leaning towards a virus. He then developed a rash which was put down to heat rash but it wouldn't fade and it got worse. By Tuesday, the doctors at Westmead wanted him with them and I think the doctors at Campbelltown were relieved to have him go where the experts are. His rash has progressively worsened, but the temps have gotten lower, he cannot stomach anything other than water so hasn't eaten since Thursday. We are now tucked up in Westmead with the BMT looking after Seth and the doctor this morning has said that they just need to rule out CMV. Once that is done, they will put him on steroids to treat GVHD. They have said Sienna's cells are very feisty and they are still trying to attack Seth's cells. The good news is that they are attacking any Leukaemia cells that might be floating around as well. So the plan is to go back on steroids and wean off them quite quickly again and see what happens again when he comes off them. They have said eventually, her cells will get used to him, it's just taking a little longer to happen. Seth's blood group has now changed to Siennas blood group which gave the Campbelltown team a bit of a shock (hehehe). Well, hopefully we should be out of here by the end of the week

Merry Christmas and Happy New Year to all! We have been fortunate enough to have Seth home this entire time. We have enjoyed a quiet holiday period as there is not much we can do with Seth being immune suppressed and Brett with his foot injury. It has been lovely catching up with friends and family. Brett came through his op well with plates and pins in place permanently and is well on his way to recovery.
I just returned from Seth's weekly hospital visit today and most things seem to be going well. They have found arthritis in his ankle from the bone scan. However his pain is getting worse as time goes by so they did extra bone blood tests (dont ask me how they do that or what they look for) and an xray today and have booked him in for an MRI. He is hobbling about like a little old man and it's sad to watch him struggle. Unfortunately the arthritis is here to stay and they believe it's due to the chemo and steroids as there was no evidence of it in all his tests before his transplant.  Unfortunately the side effects of treatment are now starting to catch up to Seth and it is a matter of dealing with them as they appear. The other thing is that one of the chemo's he has taken can shorten the calf muscles and now that he is up walking around, they are being stretched and can cause pain for about a year.
Seth is having a bone marrow aspirate next week to test for cancer. There is no reason to believe that at this stage they will find anything.
Seth is still very weak and tired and lacks energy. He finds it very difficult to walk and has found that reading is a way for him to escape and to pass the time. He is still very chubby, in fact he gained further weight since last post despite dropping one of his steroids. After losing a kilo, he steadily gained a kilo a week until he reached 32kgs.  The doctors have put this down to the second steroid he is taking, which is not supposed to be absorbed, but is in fact being absorbed because his gut hasn't recovered from the radiation yet. He has now completely finished his pred steroid and from today is halving the dose of his second steroid. Progress is being made and it's encouraging to see these medications no longer being needed by him.