Well I was right about Nunu. Got called in the night but managed to settle Ross per phone. And when I arrived at 815am I was distressed to find him perched on the edge of the lazyboy chair with his catheter jammed in the side of the bed at full stretch (obviously hurting him like hell) and his drip stretched out from his arm into the corner. Don't see how he could have got himself there but nursing staff denied they had left him like that - they said he must have got himself out of bed (which had sidebars on it) and walked (which he can't) round the bed to the chair. I was very cross but nurse manager not very penitent - saying they were short staffed. Then she went and told the nurse I was upset - not what had happened! If it were her husband I bet she'd be upset too. Ross still very confused today and no improvement in leg. Registrar came to see him and contacted the neurologists and the infectious diseases team all of whom said just to carry on with the plan and perhaps have a review CT brain scan next week. Ross did seem a little less agitated and slept for a couple of hours this morning which was great as he has been very "wired" for the last couple of days with almost no sleep. Tonight Desta is specialling him and she seemed really good (I hope!)

Pretty awful day. Arrived 830am and could tell something was wrong the way the staff were alerted to my arrival. I went home last night about 1015 having been assured a close eye would be kept on Ross. Evidently he had an awful night after I left - night nurse finally got him up and put him in the lazyboy chair - then went away and came back God knows how much later to find him in a crumpled heap on the floor. No evident injury. So I went in to find him with side-rails on the bed and looking very agitated and confused. About an hour later I alerted staff to the fact that I was getting him a coffee downstairs (they said they would keep an eye on him) and came back to find him climbing over the bottom of the bed and having cut his shin. This is why I am reluctant to leave. However the physios came and despite Ross's confusion they were really pleased as he was talking more (though it didn't make sense!) and also cooperating more and better able to transfer and hoist himself up in bed. They were delighted. Ross has been very confused and hallucinating today - giving vivid technocolour descriptions of battles and swordfights being conducted in the light above the bed -concerts ("Why don't they have sound with these things?") silver dust on his hands - horrible slimy insect things crawling all over him ("Christ - get a camera - it's a species never seen before!") a kitten in his bed, and a labrador dog in his room, among other things. Also was talking to Katherine who was standing beside the bed (he thought) but she wasn't there. The amazing thing is that I was able to tell him he was hallucinating and he had some insight into that and could even joke about it until next time. However the confusion became worse through the day and by tonight he couldn't hold a thought for more than a single exchange. He has been moved into a side room and is being specialled by a health care assistant from 7pm tonight to 7am tomorrow as I told Richard I had hit the wall. Saul came up after work and is always great with Ross - made him laugh even though he still wasn't making sense. (Katherine & Joss have headed north to Taupo Bay for Labour weekend - I hope they have a wonderful time). Unfortunately the HCA, whose name is Nunu, didn't seem to take on board anything I told her - but hopefully she can ring a bell! Tomorrow review by Infectious Diseases team.

Ross very much better today. I was shocked yesterday but it was obviously just a blip (some blip!) Today much more lucid. Still word and sentence confusion but much better able to communicate. However he is frustrated both with not being able to communicate adequately and with not being able to move - no movement in right leg from hip down yet so very difficult for him to change position in bed. And while I help him turn etc. we only just get there and it doesn't help, so spending lots of time repositioning him trying to get him comfortable. (Yes I'm watching my back - it's holding up well at the moment). The physio is working with him every day for a short period but he is not able to weight bear as yet. Evidently the feeling in his paralysed leg is ghastly. However when one considers how far he has come one can only hope he has at least that much further yet to go. I guess I'm a little impatient as we were led to believe that in 5 - 10 days he would be back to normal mentally and his leg would be working with possibly only some weakness left in his foot and it's now 8 days and he's far from that yet. I suspect they're hedging their bets now about a full recovery. Roger Mills called in briefly on his way back to Washington State, USA. Great to see him.

Unfortunately Ross not so lucid today. His biochemistry was a bit haywire suggesting some dehydration so fluids + potassium etc being pushed IV. Had a welcome visitor by way of his very good friend John Howell en route Las Vegas, Los Angeles, Auckland, Melbourne, complete with his video camera and some stunning clips of the international women's barbershop convention in Vegas (where, for the non-barbershoppers, NZ acquitted themselves admirably). However Ross, while aware who John was, was struggling to concentrate. And Jim was with him for a few hours this afternoon, but returns to Melbourne early tomorrow morning. By the time I left Ross tonight he was very confused again which has distressed me terribly. Unfortunately the wonderful nursing staff are as much in the dark as I am. None of them have experience with cerebral toxoplasmosis and while we have all been warned that it can go like this - ie good and bad days - one expects that with the appropriate treatment there should be incremental improvement, so this is very hard - to put it mildly. Thanks so much for the positive comments - I really appreciate them and Ross will too soon!

Ross was significantly better yesterday in terms of his mental state! Even to the point where he could joke. When Jim came in he said "Gidday Mike" - throwing Jim, who thought he was still totally confused, and having a chuckle. Still is quite confused but long periods where he is much more lucid. Able to tell us about his pain now. Had a bad period this afternoon of pain and agitation, but these periods are shorter and seem easier to get under control. There was a tiny bit of movement in his right foot and his right hand is definitely better coordinated. It seems unbelievable that someone can return from such a dark place but it's wonderful even though still a very long way to go!

Yesterday Ross seemed significantly better - speaking phrases and laughing even though often it wasn't entirely appropriate. Harris got him up into the lazyboy for an hour or so. Unfortunately he had a very bad night last night - lots of agitation and pain. This morning seemed not so good. Up again and had bowel cares then was showered and seemed totally whacked by 115pm and slept most of the day since. Definitely not as alert as yesterday. This worries me immensely but I have been told repeatedly by the docs that this is how it will go so just have to be positive that it's 2 steps forward 1.5 steps back but overall progress is being made. When Richard did his ward round this am we saw a very small flicker of reactive movement in his right foot. That is heartening. Tonight Jim is with him.

Ross seemed a little worse yesterday which worried us considerably. Very sleepy. Evidently the brain scan showed there was a suggestion of an early infectious area forming around the basal ganglia in the central brain which could be contributing to this. However the neurologist and the infectious diseases physician reassured us that this was how it was going to go and it would be 5-10 days before real improvement, but they were still expecting real improvement insofar as his cerebral state is concerned, though there may well be a residual deficit of his foot. (I hope they are right!) It is very hard for us to see Ross like this. Ross had an abdominal and pelvic scan to check on this severe pain he has been having. I stayed overnight last night. Slept about 45 mins between 6 and 7am, though Ross was better than previous nights - only 3 bouts of pain and settled reasonably quickly after each one. This morning I felt he was a little better - certainly in terms of his eating and swallowing, and the odd appropriate response. Still unable to answer questions or let us know where his pain is. Richard Doocey on call this weekend who has advised that the scan was normal in terms of lymphoma! That's phenomenal news. It is an improvement on his last scan. Only problem is some high severe constipation which could well be causing quite severe pain. This is being dealt to by his wonderful current daytime nurse, Harris. Katherine with him now so have come home for a nap.
1247am Sunday
Ross was very much better this afternoon. Smiling, calling people by their right names, and saying appropriate phrases (but also inappropriate and getting very mixed up). However huge advance on yesterday. Tonight however quite severe agitation and pain from 1030pm to 1230am at which time I left him in the care of a health care assistant as I am shot. Don't believe it's serious - things starting to move in his bowel and also his poor brain starting to kick in again causing confusion and agitation.

Katherine stayed at the hospital overnight. Evidently lots of pain and Katherine was busy most of the night. This am little change but the wonderful nurse Leanne had used her magic tricks and got bowels to work this am and showered him and he seemed settled for a while after that. Lunchtime he seemed to dramatically improve - when Drs came round was able to answer some (not all) very simple one-word questions and point to areas of his head but not his body. Feroze (the registrar) thought he saw a flicker of movement in his right foot. However tonight back to previous state. All the Drs say we are now in unknown territory and they don't know how long before real improvement, but Infectious Diseases Drs have warned it could take 7-10 days. Therefore still remaining positive. Brother Jim flew over from Melbourne and is doing the night shift tonight.

2-3am antibiotics given 8pm and 11pm last night but still no improvement in mental state by 3am this morning. Very distressed with pain and unable to communicate. Settled with morphine. Praying for meds to kick in today.

930pm condition definitely worse today. So many things happened. N-G tube unsuccessful. Severe pain and agitation. Lots of morphine given to no avail. However around 3pm catheterised him - huge backlog of urine - and he settled. Was calm for CT scan late this afternoon which was unchanged. Neurosurgeons can't explain the decline in conscious state other than to suggest "decompensation" (ie his brain had put up with lots and lots and finally decompensated.) They said if that was the case hopefully he should recover with the antibiotic treatment. Late this pm Saul arrived and I went downstairs to buy a coffee. When I came back Saul was feeding him peaches! (He had been unable to swallow). Then had a bit of icecream to the alarm of staff who were concerned about choking but he was fine. Smiled at the nurses. Said "See you mate" to Saul when Saul said goodbye. (This was cause for minor elation!) Unfortunately another bout of pain but settled very much more quickly than earlier today. Even though he again became unresponsive, we are all optimistic that things are turning around. Because of earlier inability to swallow, antibiotic changed to IV bactrim from 4pm today. God what a roller-coaster. Katherine and Joss staying there now.

Sorry folks but no visitors other than immediate family at the moment.

What a day. Neurosurgeons came round with the most pompous consultant - Robert Aspoas - Sth African. He pooh-poohd the neurologist's opinion re the scan being an unusual infection, convinced it was tumour, and said he would do a biopsy on Thursday with platelet cover. However though this would confirm tumour vs infection, the definitive diagnosis would be a further several days to a week for histology. Meanwhile he was averse to any treatment that would affect the lesion (ie antibiotics or antifungal etc which could mask the histology). By this time Ross's confusion was very marked and I was panicking. However only about an hour later three guys from the Infectious Diseases Department came around - head honcho Mark Simpson (?) who was a really lovely man who spoke to Ross as though he completely understood even though Ross didn't respond and spoke to me as a real person. He told me that the cerebrospinal fluid culture had revealed "bucketsfull" of toxoplasmosis, and he was convinced that the lesion was toxoplasmosis and could be cured simply by specific oral antibiotic pills. He felt there should be considerable improvement in Ross's condition within a week, though Ross will need to continue to take the medication for many weeks. Naturally I broke down. This is the best possible news we could have had. However doesn't mean we're out of the woods. We hope all this is in time to avert permanent damage. Also Ross had been having severe abdominal pain. Had a plain abdominal xray which showed serious high constipation and masses of air in his gut but no definite signs of obstruction. He went down for CT scan of the head but the abdominal pain became so severe he was writhing with the pain and couldn't remain still enough for the scan to be carried out so had to be returned to the ward for high dose morphine - it was awful but eventually settled. Meanwhile the prescribed anti-toxoplasmic drugs didn't arrive in the ward until nearly 8pm by which time Ross was nearly unresponsive to instructions. His nurse will give him another dose at 11pm, then 4 doses tomorrow. For the interested, the drugs are Pyrimethamine (Daraprim) which is an antimalarial drug, and Sulfadiazine, an antibiotic. Also his constipation has been being treated with high doses of laxatives but no joy to date. This will in part be due to the paralysis. I'm not sure how I feel at the moment - probably like having been run over by a steamroller - having been the lowest of the low today and the highest of the high when the toxoplasmosis news was given, to now somewhere in between!

I phoned the hospital this morning and told them Ross had significantly deteriorated and that he needed urgent investigation. He has now lost all movement in his right leg and has loss of coordination and fine movement in his right hand, though strength seems unimpaired. Also I had detected some confusion. Andrew (Ross's nephew) came round and helped me get Ross to Haematology Daystay where bloods were done and consultant haematologist Richard Doocey came to see us and assured us he would get urgent neurological and neurosurgical opinions, hopefully today. However we were stuffed around in daystay for most of the day before finally getting up to Ward 62 and during the course of the day Ross became much more confused. But within minutes of arriving in Wd 62 the neurological registrar (Mark Simpson) arrived and examined Ross, then returned with the consultant (Ernest Willoughby) who reviewed the scans and felt the lesion was atypical for a tumour and more likely to be an unusual fungal infection, but couldn't rule out tumour so wanted to commence aggressive treatment again with antifungal drugs and steroids to reduce cerebral oedema. Within an hour the neurosurgeon (Simon John)had also arrived somewhat apologetically at having not come before (the referral went through to him two weeks ago but he said he didn't want to see Ross till his platelets were up). Anyway he feels that the lesion is surgically accessible when Ross's platelets return to normal (they had leapt to 68 today which is good). However by this time Ross was unable to complete a sentence as the confusion had progressed even further within the space of a couple of hours. We just have to hope like hell that the aggressive steroids reduce the cerebral oedema before there is permanent damage. An urgent scan is being performed tonight (could be 2am or even later - whenever they can do it) which will hopefully point to why this deterioration has occurred. I am very very relieved that everybody has leapt into action but terrified about the rapid progression of symptoms. My slightly consoling factor is that the specialists seemed pretty confident they could get improvement.

Ross has remained in bed all weekend very fatigued. Finds it difficult to raise himself to a sitting position without assistance. Mobility seems worse and fine movement in his right hand now seems affected though power still seems good. Got a call from the hospital to say CSF was normal which means we're none the wiser about the pathology of the lesion. Hospital for bloods tomorrow am and I am going to push hard for neurosurgical consult - if not through the hospital then privately - which I have already done but to no avail. This time I will be much more assertive!

Another day at the hospital. Two big bags of platelets to bring the platelets up to a level suitable for lumbar puncture which was eventually carried out uneventfully, after social worker, occupational therapist, transplant coordinator, day stay coordinator, registrar and consultant had all had a chat. Cerebrospinal fluid (CSF)was clear, which tends to suggest that the lesion is neither infection nor abscess, but that is not definite. Will return to hospital on Monday for further blood tests and CSF results (looking for either infection or malignant cells). Right leg definitely worse, and the left leg is now very weak and the pain and numbness around the left hip/abdomen/thigh continues, as does extreme fatigue - consequently walking with crutches almost impossible even for very short distances. Have swapped some equipment and now have a wheelchair on loan. Ross can stay in hospital but neither of us want that if we can avoid it, and it could be some time before platelets return to normal - they had dropped again today prior to transfusion which is "normal" post-transplant.

Pretty discouraged. Good leg now shows weakness and getting around is hugely difficult. Big problem in that house is multi-level so a wheelchair is not a goer - steps from bedroom/ensuite/hallway to kitchen/family, where wide screen TV resides, are too steep for a ramp. It's hard to stay positive when there is such increasing frustration and still so much uncertainty.

Spent last 2 nights at home - much more comfortable than hospital. Went into DayStay today for blood test. Platelets still refuse to budge - mid 20's and they need to be >100 for biopsy. My right leg is getting worse so they have upped my Dex again and booked me in for a lumbarpuncture Friday. Won't be ready for a biopsy till next week.

Very fatigued - not sure whether general weakness due to post-transplant effects or lesion.

Yes - have had a couple of days at home, back to hospital this am for blood tests and scan and now discharged. Scan shows little change. Bloods still slammed, particularly platelets, so it's still a waiting game. Back to Haematology Daystay Wednesday morning to check platelets again, and arrangements will be made for neurosurgical consultation when platelets recover a bit. Came home with various equipment courtesy of OT which will hopefully make things a wee bit easier. Mobility still very difficult, even more so as Ross is totally wiped out (post stem cell transplant) which makes supporting himself on the crutches exhausting.

Yes - brought Ross home last night - disconnected from the dreaded IV pump. Saul and Duncan came round - Duncan totally exhausted after having gone 2 days without sleep to meet the deadline to get his wind turbine airfreighted to wherever but he had tea with us, and set the Timms possum trap for us - successfully! (A big possum very dead this am. Hope it's the one that's been scaring me by leaping on the roof and looking through the windows late at night!) Ross pretty whacked but managing to get around, albeit very slowly, with crutches. He had a great night's sleep - 8 hours! First time since going in to hospital so that's positive. And so far nothing untoward to report. Back to hospital tomorrow (Sunday) am for blood tests and probably platelet transfusion.

Not feeling so good. Antibiotics stopped as full 12 day course has now been completed, so Ross is now free of IV drugs. Bloods doing well except platelets which are very slow (which is what usually happens after high dose chemo) so platelets given again today. However neutrophils now beyond the magic .5 level so he can come home for a few hours, or even overnight, and we may do that. For CT scan Monday.

Still feeling pretty down, but bloods excellent - neutrophils up to .39. Tremor much improved. Had a better sleep last night. The waiting game is a bit hard to play. It will probably be Monday of next week before he can have a repeat scan and we know where things are going. Perked up after visits from Kim, Rick Archer, nephew Andrew, and my brother Bas & Carolyn (back from Paris!)

A pretty rat-shit day after a disturbed night. Ross has developed an intermittent coarse tremor of his right leg which distresses him and increases his difficulty with walking. He is also chronically low on sleep as nights are disturbed with 4 hrly penicillin and obs, loo visits, sweats, and occasional tremor. However bloods doing all the right things with neutrophils up to .22. Platelets given today. Will take a sleeping pill tonight and hopes to get a decent sleep which should make him feel a lot better.