Another glorious day. Ross has unfortunately been troubled again by significant diarrhoea. During the drug debacle when the hospital pharmacy was taking some drugs away from the bag as I couldn't pay for it all they accidentally took away the Loperamide (the anti-diarrhoea drug - though naturally still charged me for it) so we have had to have a trip up to the Pharmacy at Coopers Beach today. Except it wasn't really so unfortunate as we took Jan and Murray with us and had a delicious lunch at the newly renovated Coopers cafe sitting under the partial shade of a Melia tree with a gentle breeze blowing. Pretty nice. Also got shopping done. But also good news. When in Kerikeri the other day I bought Ross some cheap Warehouse shoes - the ghastly kind that do up with a couple of Valcro straps - as he was making his expensive orthotic shoes sodden with the waterblasting. Anyhow he wore them today WITHOUT THE SPLINT and managed well (using the crutches of course). That's real progress. Pretty good particularly as $20 is so much better than the exorbitant price of the ghastly orthotic jobs. His pain seems a little better today though it troubled him during the night. Off for another swim! Roll on the day when Ross can too. I genuinely believe he will before too long.

Weather glorious. About to have my 3rd swim of the day (not counting the waterblasting).
Ross is pretty down as he is sick of waking up "racked with pain" as he describes it. This despite lunch at the Waterfront Cafe yesterday with Murray and Jan (Murray's birthday) and cricket and tennis to distract him though I am sure it helps. Back on to the antidepressants if I can get a script arranged. A further ongoing worry is the drug situation - A+ Pharmacy short-changed us on pills and we will run out - I have had to sort this - plus they say they have been undercharging us(!) and now they cost over $400 per fortnight. So more hassle re trying to apply for special Pharmac funding, and even if successful no back payment. Still no word as to when the scans and the colonoscopy will be but at this stage we plan to return to Auckland 7.2.07.

Yes, here we are back in paradise. Ross is to have a further MRI scan of his brain to check the "bright" lesions, which have however shrunk dramatically, and also hopefully to see whether there is some spinal nerve impingement causing the swelling and paraesthesiae (numbness and pain) in his legs and feet. However we felt a couple of weeks in paradise should take precedence this time so here we are. Major problem we have encountered is the cost of his maintenance drugs which aren't subsidised and come to over $150 per week! Weather here has been sublime. Ross isn't allowed to swim but has been able to potter about the place and - would you believe - has been waterblasting our filthy and mildewy deck - lurching from support to support with one hand and guiding the waterblaster with the other. It is many days' work and it is amazing how much steadier he is since he started. Also enjoying the cricket and the tennis. Ross still has lots of pain in R foot and L knee particularly and gets very whacked but he isn't taking it lying down!!! (Well certainly not all the time anyway). We have had friends staying in the St John Ambulance staff bach next door and had a communal bbq here for 10 of us - good fun. Had tuatua fritters (tuatua gathered by me and Jan Jones) and fresh scallops just shown the bbq with garlic butter, dived for in Whangaroa Harbour only an hour beforehand - nectar from the gods (courtesy Doug Shadbolt and Morgan Piripi staying next door with their wives Gaye and Barb - ex my qtet "Life's A Pitch".) And Saul and Jo will be coming up for Waitangi weekend as are Steve and Margot so even more fun! Love to all our friends and family supporters. No Tom we still don't have a Weber bbq but are thinking about it!

Saw the Haemotologist Wed for review of recent tests and scans. LDH is still up a little but is steady since the transplant so doesn't think its cause for concern. Abdomen CT showed nothing new and all existing lymph stuff has shrunk a bit. A little concerned about "thickening" of colon seen, probably colitis but will have a colonoscopy to check it out. Whoopee. CT of brain was confusing - toxo lesion is smaller but shows brighter on CT. I'll have an MRI in a couple of weeks.

They are scratching their heads over the swelling. The CT shows no damage to the lymph nodes that would account for the oedema so they will review them again. I get stiffness and pain in the legs as well.

Now 5 months since transplant. 13 months since diagnosis. Back at work this week. Will try driving soon, probably with the left foot (hand controls would cost $2,000).

Saw Comet McNaught tonight. Visible with naked eye in SW sky just after sunset, just above the horizon. Brightest comet in 30 years.

Picture taken by my mate Russell in Waitakere:

Lymphoedema seems worse as does the pain. However managing to get out and about albeit with some difficulty. Went to work yesterday. Big appointment at hospital tomorrow - hopefully some answers but we won't hold our breath. It really seems as though we're the experts not the docs now! Investigating hand controls for the car which would hugely increase independence.

Returned to Auckland as Ross had hospital tests yesterday - firstly to determine thyroid function and secondly scans of brain, abdomen and chest - results of all at appointment on 17.1.07. His doctor was sick so saw another (Nicky Eady) who was very helpful but not optimistic about the lymph swelling of his legs and feet going away, but felt something may be able to be done about the pain. She is keen to see if the scan sheds any light on the lymphoedema. If there is scarring on a lymph gland there's a slim chance lymphatic drainage may improve a bit as the scarring heals. So more wait and see. Meanwhile had dinner at Mercure Hotel with Timmy, Hamilton, and their friends Ralph and Leslie Pees last night (they are all going to the tennis today). Ross managed the whole thing on crutches (ie no wheelchair) - a first! Today K, J, and baby Anya return from Taupo Bay and Joss goes tramping for 3 days around Lake Waikaremoana from Sunday (weather permitting) so we'll be live-in grandparents again as K & A will probably stay with us - Hooray!

A glorious morning in paradise. However Ross is in quite a bit of pain and his lower limb swelling now seems definitely to be lymphoedema rather than "water retention" as no response to the Frusemide over the past week, so he will discontinue taking it. He has been getting little exercise, although is getting about the house on crutches which is geat. But although he got down to the beach on New Year's Eve he had difficulty getting back up the path, not because of paralysis but because of the pain in his foot and ankle in dorsiflexion. Worrying but not a lot one can do so will hang in there until we see David Scott again on 11.1.07. prior to the scans when he will arrange further tests. Saul's friend Ben and Jo's friend Nicola headed back yesterday, and K, J and baby Anya arrive today.

Some photos I forgot to put up:

John Howell with Anya


Ben Baker with porae (dinner the other night)

It was pretty quiet up in Taupo Bay. We didn't need to light a fire on the beach because our neighbours each side built one each, so we sat on the deck and watched the fireworks. A large visible police presence along with a liquor ban contributed to one of the quieter NYE's we've had.

Saul and Ben are out in our tinnie trying to catch dinner. If that fails we are off to the (world famous in NZ) Mangonui Fish and Chip shop. They went out New Year's Eve with Dee and Jo and had no luck either.

Katherine, Joss and baby Anya are due here tomorrow.

I have abandoned the walking frame and now get about on crutches. Rehab were not keen on this as they thought my R leg was too weak but it is now pretty strong though still difficult to control. The big problem now is lymphoedema - swelling of by legs and feet because my disaesed lymph nodes aren't able to pump the lymphatic fluid out of them.

I'm pretty much confined to the house and decks. No worries - there's cricket on TV and a few books I have to read.

I want to wish all a safe and prosperous 2007. There have been times when I wasn't sure if I would see another summer, and the amazing support I have had from everyone has made it so much easier to look forward. The cards, letters, emails, phone calls, visits, meals, flowers, and viewings of this blog are very much appreciated by us both (the most visits the blog has had on one day is 78, on November 12)

Long appointment with David Scott, new registrar in Haematology whom we have met before in his previous two lives as registrar Infectious Diseases and registrar Neurology. Ross's paraesthesiae (numbness, pins & needles & pain) in his good leg is more extensive but probably less severe. The pain and swelling in his lower limbs has many possible causes. Blood test normal except for low thyroid tests - one possible cause. Probable cause lack of dorsiflexion etc of the feet. Meanwhile on Frusemide to attempt to reduce the fluid, though it is unlikely to be effective, and wait for CT scans and appt 11 and 17 Jan. Off to Taupo Bay complete with the cat tonight. Landline number 09 4060937.

Home life a bit disrupted by tradesmen. Today I stayed with Katherine and Anya as Joss had to work up at Titirangi and Ross was home alone - (except he wasn't as he had a very welcome lengthy visit from John Howell who has just hopped over the ditch from Melbourne to catch up with family and friends). Great for Ross to spend time with him. Ross is in quite a lot of pain now. His lower legs, ankles and feet are very swollen. Will phone Haematology tomorrow for some advice. We have reinstituted the Amitriptyline 20mg every night and hope this might help.

Christmas Eve was frantic but blessed. Katherine, Joss and Anya joined us together with Saul and Jo and Rafe and Barb for turkey and trimmings last evening, as Saul was leaving for Matamata early this morning to visit with Jo's family. Anya was perfect and K & J looked as though they had been parenting for years - real pros! A really joyous evening, only marred by the fact that at bedtime we discovered that the Auckland City Hospital pharmacy had dispensed the incorrect medication to Ross (instead of sulfadiazine they had dispensed sulphasalazine (or salazopyrin) which is great if you have arthritis but not going to do much for toxoplasmosis. I had already given Ross a dose and hadn't had my glasses on - noticed it was different but assumed it was a different or generic brand. I contacted the hospital and it was some hours before we got it sorted as no pharmacy staff on etc etc. so once again a very late night. Fortunately they told us the pharmacy would be open today for a few hours, so had to front up to the pharmacy and sort it. Yes I did make a formal complaint. While no real harm was done it could have been a very different story if we weren't on to it and Ross had taken the incorrect medication for the next month - ie recurrence of the toxoplasmosis with possibly very severe consequences. Makes me wonder how many people out there die because of pharmaceutical errors that remain undiscovered...... K returned to Birthcare for the night. Not sure how long she will stay but possibly another night. They are thinking of joining us at Taupo Bay for New Year's Eve. Since Anya obliged by arriving a little early we will probably travel up to the Bay on 29.12.06. (We have a tradesman here 27 and 28/12 getting the bathrooms up to scratch ready for selling the house). Wow. Life is good!!! Ross is fine, with just a bit of tendon soreness in his legs from all the activity and the numbness in his right leg has extended further down the leg. This was predicted.

arrived at 11:45 last night with no problems. 6lb 9oz (2977 grams).

Had a visit today from my nephew David, his wife Tina, and their 1 year old son Lloyd. They are visiting from Perth.





(isn't he a sweetie).

Progress in my right leg is not as fast as I would like. I am using the cycle machine daily to build up strength.

As of 2 hours ago, Katherine has started labour. Watch this space.

Ross has been to work Monday and Tuesday and worked full days. Monday we even went to a movie after work (The Departed - pretty good) and Ross managed well. Today he did a bit of work at home and we went down to Mission Bay to lunch at Riva's with Katherine, who is just fine. Ross lunched in the wheelchair but we then got his walker out of the car and he walked nearly 500 metres along the waterfront and back, stopping for a few rests en route. This is the furthest he has walked so we are very encouraged. Had blood tests this pm. He tried doing without amitriptyiline last night with no ill effects so will try alternate nights and then stop. The fewer drugs the better! Tonight dinner with Temprecord Directors and spouses at Dine (Sky City).

Yes - still Dee. I picked Ross up from work on Friday and with all the paraphernalia left his laptop on the road beside the car! Fortunately Ken saw it and has retrieved it on his way out but it means that Ross doesn't have access to a computer as he still can't make it up the stairs to the study at home. (That after having a slight accident in the car during the day). However we've had a good weekend. Yesterday had to pick up his prescriptions ($204!!!!) and did a bit of shopping in St Lukes. Saul's birthday - he went up to Jo's folks'farm at Mahurangi with 10 friends for the weekend. Can't believe he's 32! Last night we had a barbecue here for Pros 'n Cons (Ross's mixed quartet). Such a long time since they have all been together. It was a magical evening and they even sang sitting around the table and sounded pretty good. Made me weep needless to say as there were times we thought that wouldn't ever happen again. Today brunched with Katherine & Joss at Byzantium in Ponsonby (wonderful Egg Benedict with smoked salmon) and a further detour to St Lukes mall en route to home and a quiet evening. K looking wonderful but doesn't look as though birth is imminent. Had a flying visit from Dave & Di H - great to see them. Work again tomorrow.

Yes - unbelievable but true. Ross had a full day at work today. I drove him there and back (what a pain - traffic both ways twice!) and he was very tired by the time I picked him up but nonetheless! Great stuff. And the wee bit of movement in his right foot is still there.

Thank you so much all of you for your prayers and good wishes. Ross is very blessed to have such amazing friends. We think he had the prayers covered - Jew, Muslim, Buddhist and many demoninations of Christian to our knowledge and probably more we don't know of. It has been incredibly humbling and you will never know how very much this has meant to us both. The wonderful miracle is that he is here, home, healthy (albeit not quite as before) and happy!

May you all have a wonderful Christmas and a happy, healthy and prosperous 2007. With love from us both.

...yesterday. They really pushed me on the last day - 2.5 hours of physio. They finally got my diet sorted - had a pie for lunch! The physio managed to get me a second walking frame - saves moving the frame from one level to another when I go down the stairs. I noticed on Tuesday night that I had a microscopic amount of movement in my right foot, so I'll be working on that. Had a celebratory dinner with K&J.
Today we bought a wheelchair - figured it was more economical as can sell it in the future. Whilst returning the loan one to Rehab+ heard a car honking and there were Liz and John Markham and Theo!!! So shared the delights of the Mud Pie Deli with them. Great to catch up. Tonight Ken came round with electric planer and planed the ramps which can now cope with wheelchair or walker. So now all set. And planning to go to work tomorrow. The house is chaotic with painters and blinds down for cleaning etc etc. getting ready for the big sell.

Further good progress at physio today. Underwent some balance tests and definite further improvement. Blood test yesterday showed a further decrease in potassium so Slow K tablets increased to 4 of those "manhole covers" as Ross calls them three times a day. This evening it was the Friends & Family Night at City of Sails Chorus and Ross decided to go. A great evening, despite the 35 or so steps to get up there and down again, which Ross managed really well, though used the wheelchair once up of course. There was a fun quartet competition and Ross did the computerised scoring. At the end of the evening he had a bit of a sing with some of the guys who were considerate enough to sit and sing with him (for the uninitiated - it's not done to sing barbershop sitting down). They sounded pretty good. Great for him as it's the first sing he's had in many months. Didn't get back to Rehab+ till around 1215pm. I don't think I mentioned that Ross weighed himself at the weekend and has gone from 52kg in the raw about 3.5 weeks ago to 68kg in clothes. Thanks to Saul for preparing and taking up all those delicious high calorie meals for him. His appetite is now excellent, but I think we now should put the brakes on! The family meeting that didn't take place last week is now tentatively set for 3pm Wednesday. A bit late if he's to come home on Wednesday - it will be a discharge meeting I guess. I phoned Ross today and asked him to check on his discharge care package. He had a chat to the social worker who undertook to put in a referral for some home personal cares but goodness knows when the assessment will take place - certainly not before he's due to come home. I took it for granted that all that had been done but no - they had to be prompted. (Sigh.......)

Another good day - managed pretty well. Richard Lewis came by this afternoon and made the ramps (thanks so much Richard!) We just need to get hold of an electric planer to plane the bottom lips of each. Reluctantly returned to Rehab via McDonalds (yes twice in two days but this time it was truly disgusting!) Really looking forward to Ross coming home hopefully Wednesday but the family meeting last week was postponed for reasons unknown and don't know when the next one is.

Both had a great sleep last night. Ross is now off the dexamethasone (heavy duty steroid for brain swelling). Pottered with household tasks - Ross dealt with mail etc - then this afternoon went to Bunnings Warehouse for bits and pieces including plywood for a ramp (Ross feels a ramp is preferable). (However wouldn't go into the car so had to get it cut so will be a series of ramps up each step!) Also had a bite in McCafe - very wheelchair friendly. Tonight Steve & Margot came for dinner and we watched "The Inside Man" on Sky - not a bad movie. Ross has done really well today. After coming home we left the wheelchair in the boot of the car. And the diarrhoea seems to have improved quite a bit.