'Exceedingly good cakes'

Day +268

Been a bit quiet in the blogging department as not a great deal has been happening recently. We packed the kids off to Sam's mum's farm for a week. This gave us a chance to get out to the movies and a restaurant (Gran Torino and Chinese food respectively). Plus, the house stayed clean and tidy for a week - I wonder why?

This week though the good news is that one of my IV antifungals is no more (caspofungin)- hoo-bloody-ray! Also, my steroids (prednisilone) finish next week. They have weakened my body so much it will be a huge relief to get off the damnn little white things (I have the physique of Gollum at the moment). I have appointments next week for a Broncoscopy and an MRI to check out my lungs and back (which has been sore for weeks). Both are on the same day. I also started visiting a physio this week. She was quite gentle with me...I think this approach may change; especially if I get Helga from Bavaria next week.

I also saw the eye specialists this week and they were very happy. No more spots behind the eye, only scar tissue is visible. I was told that I am one of the few people in the world to have survived this fungus - well that certainly puts things in perspective, probably 'too much' as Derek Smalls would remark.

One of the highlights of this week was finding Mr Kipling cakes from the UK in the supermarket: Cherry Bakewells, Battenburg, Bramley Apple pies - fantastic. The lowlight was a bout of food poisoning (no, not from the cakes!) especially when I cooked the meal in the first place! Thankfully no-one else was affected (they avoided the sausage with the roast chicken). Quite an innocent looking banger I thought as it went in the oven with the chook. Alas, evil was lurking within.

Current Reading: 'Making Friends with Hitler...Britain's Road to War' by Ian Kershaw
Current Listening: 'The New Normal' by Cog (Bondi's finest)
Currently Eating: Cherry Bakewell (with a cup of Earl Grey, naturally)

Bad to the Bone (or just slightly irritated)

The good news is that I am now down to one hospital visit a week - woohoo!

I do have to go in this Friday however, for an appointment with the Orthopaedic Department (the infection has suprisingly fractured my femur - I should be in agony I've been told!).

Also, I need a Chest X-Ray and Bone Density Scan so a fun packed day on Friday to look forward to. The knee isn't giving me much discomfort but my back is painful when I sit down or get up. Never a dull moment in life after a transplant operation.

I feel like old man Steptoe with all these aches and pains. I'm watching 'Dylan Moran Live' and episodes of 'Curb Your Enthusiasm' and 'Ever Decreasing Circles' to keep the humourometer in shape (yes, I made that word up) so I don't start acting like him.

Other good news is that we may get away for Easter. 'Hospital in the Home' are happy for Sam to administer the IV fluids for the weekend. We definitely all need a break and Flinders is a great little town on the coast; the kids love riding their bikes all over the place, using the swimming pool and hunting for crabs.

In AFL news we have Hawthorn vs Sydney to look forward to on Saturday.

Current Reading: 'Making Friends with Hitler...Britain's Road to War' by Ian Kershaw
Current Listening: 'Crack the Skye' by Mastodon (amps to 11)
Currently Eating: Digestive Biscuit (with a cup of Earl Grey of course)

Family of Badgers

Day +223

Hello again out there in blogland. Had a very busy day at the Alfred Hospital yesterday - lots of x-rays for both my back and right knee. At least I'm down to two days a week (Mon & Fri) visits to the hospital from this week. Let's hope the anti-biotics start to reduce as well. They are tapering the steroids, which have wasted my muscle mass, so hopefully I can start gaining some weight. Talk about baggy trousers; I could get a family of badgers down my jeans quite comfortably!

Looking forward to Hawthorn's first game of the season next weekend against Geelong. Also, great to see England crush France in the Six Nations rugby.

Current Reading: Lawrence of Arabia:'The Life, the Legend' by Malcolm Brown
Current Listening: Amor Vincit Omnia by Pure Reason Revolution
Currently Eating: Mentos

Back in Blogland

Like Lazaruss I have returned! I can imagine the anticipation that you must all have been feeling (cough!). But now the wait is over my friends. Blog 2009 starts here...

So, since November I've had a couple of hospital stays due to infections. One of them spread to the back of my left eye and could have resulted in me losing my sight and spreading to the brain - not good! A course of injections in the eye were worth it (yes, it's as creepy as it sounds) and have reduced the infection, though I'll still be on the antibiotics for weeks/months. I've since found out that I'm one of the few people in the world to have survived this particular bug - makes me wonder how many lives I've get left - I must be nearing nine!

The other problem at the moment is an infection in the knee. Septic athritis. They have performed a few wash-out operations to clean out the joint. I'm not hobbling around anymore and the swelling is gradually reducing itself. The docs have no idea of the long-term effect as some of the bone had been damaged by the infection. Never a dull moment in the post-transplant world.

Unfortunately, I'm still obliged to go in to the the hospital out-patients' clinic three days a week - which takes up most the day. Plus, I have hospital-at-home come every morning and evening to administer my IV antibiotics. So, basically I'm a slave to all these drugs at the moment.

I'm still struggling to gain weight, though I'm eating okay and reading - bizzarely - cookbooks. I recommend Delia Smith's grilled lemon chicken kebabs. Delia you are a domestic goddess!


Current Reading:'I Peed on Fellini' by David Stratton
Current Listening:'Secret World Live' by Peter Gabriel
Currently Eating: Tomato soup with toast and Homus

Mistletoe and Whine

Apologies for not updating the blog sooner. I've had a few issues trying to log-on through the hospital network. Anyway, since my last entry things have seemingly turned a corner - thank God - yet again. The GVH has not returned and the fungal infection has reduced behind my left eye - what a relief! The docs are also reducing the anti-immune drugs and steroids. The steroids I've been on for the last few months are also a muscle waster (not that I had much to lose but when you struggle to get off the toilet seat you know you're getting weak - I was almost stuck in the toilet at LA airport!).

There's is talk of getting home next week. Let's hope so, if these infections don't kill me the food will! The kitchen needs a Gordon Ramsay type to kick some arse. I have visions of a George A. Romero Zombie-like catering staff dragging their feet while muttering some inane gibberish (they are quite possibly chained to their work stations). I'd like to see the chef (I use the term extremely lightly), catering manager and food buyer led in chains to a public stocks in the city centre to be publicly shamed. Either that or their heads on spikes outside the Town Hall. A tad too far? I think not brothers and sisters. Food crimes should be punishable by 17th century standards (though scrumping apples resulting in 15 years hard labour was a bit harsh!).

Since returning Down Under I've been spoilt by all this Rugby coverage back in OZ. An excellent World Cup final in the League between Australia and New Zealand and in the Union the Wallabies tour of Europe. A real shame Scotland didn't hang on to their lead against South Africa, but well done to the Pacific Islanders beating Italy. Let's hope England can win at least one game at the weekend after their recent thrashings by South Africa and Australia. Oh, hang on, it's against the All Blacks!

Current Reading: Still on Mr. Heston's film journals (up to 1963 - '55 Days at Peking'). (interesting)
Current Listening/Viewing: Radiohead 'In Rainbows from the BBC Basement' (genius)
Currently Eating: Hard Boiled Egg Sandwich (edible)

#2, Thank You

Hello again. Back in hospital having loads of tests (Bone scans, eye tests, ultrasound, CT's etc...). The best ones are yet to come though: Colonoscopy, liver biopsy and the 'look away now if you are sqeamish' an injection in the eye! The last time I experienced such a gruesome thing was watching 'Zombie Flesh Eaters' about 20 years ago. I'm still haunted by it now.

And on another gruesome subject, the diarrhea has virtually stopped so solid #2's are back after 2 months. So in the words of the late great Jeff Buckley (and miserable Mr. Cohen) - Hallehlujah!

I spent the weekend in the cardiac clinic. I experienced a few pains in the chest on Saturday morning so they kept me downstairs on the 3rd floor on the heart monitor. It was nice having my own room again and away from my last room mate: "I know I have tatoo's and a shaved head but I'm quite a nice guy" he says as he wraps his fingers around my throat! Managed to catch-up with a few classic 70's films downstairs: The Omega Man and Logan's Run. Both are still great and The Omega Man shows the lack of imagination used in 'I Am Legend'. Why use poor CGI when make-up effects can be far more appropriate? Sorry, that's my moan for the day.

Thanks to the lovely Cath for the constant supply of magazines.

Current Reading: The Actors Life: Journals 1956-1976 by Charlton Heston ("Prise this book from my cold dead hands")
Current Listening: Adore by The Smashing Pumpkins
Currently Eating: Vegetarian Sushi Roll

No Leukaemia!

Day +94

Sam again. Looks like I have to resume my role as substitute blogger once again. Please see below for a copy of the update I have just posted on the website.

We arrived home tired but safe and sound last Thursday. I am sorry about the lack of updates in the interim but it has been an emotional week. It is so wonderful to be home and I have been crying at the drop of a hat but as Jack said with tears in his eyes on arriving to the house, "don't worry Mum, they're tears of joy". Sweet boy.

Graham spent one night at home and was admitted to the Alfred Hospital for IV treatment of his fungal infection on the Friday. At admission, we found out that the fungus that is causing his infection is very rare. What else? It is called Scopulariopsis Brevicaulis and they have never seen a case like this before at the Alfred. So they have been doing lots of reading up and consulting with experts in Adelaide to work out the best treatment. Unfortunately, it is very resistant to therapy and may spread quickly to other organs. As a result, Graham has had all sorts of tests of his lungs, brain, bones and heart. They also added another anti-fungal to the two he was already receiving and while there have been a few new skin lesions, the infection isn't running rampant and hasn't spread away from the skin. So that's all good.

We are waiting on sensitivity testing on the strain of fungus that Graham has and hopefully the results will allow his Docs to target the therapy rather than giving a lot of anti-fungal drugs as some of them have nasty side-effects such as liver damage.

They started to taper his steroids mid-week (which will help with his immune reconstitution and hopefully increase his ability to fight the infection) and his diarrhea hasn't worsened, so this is also good. The worry is that if he still has any active GVHD, the steroid taper will make it flare again, necessitating an increase of immunosuppressive therapy, making him even more susceptible to infections and reducing his ability to fight the current one. He will have a colonoscopy with a biopsy next week and as his Doctor said to me, we will be hoping to see a damaged bowel but no evidence of active GVHD.

This morning we found out the wonderful news that Graham has no minimal residual leukaemia (MRD). This result is essential for long-term survivial and was the aim at the beginning of our journey so it is impossible to over-estimate the importance of this news. As Prof MacIntyre says in her 2005 paper on the test, "molecular negativity is indispensable for survival...in this rare, poor prognosis, subset of AML." Bear with me while I explain a bit more..

Graham's disease was characterised by a rare (of course) translocation of genes 6 & 9, also known as DEK-CAN as shown above. The most sensitive testing available for this translocation is a (RQ)-PCR molecular test done in Paris by Prof Elizabeth MacIntyre. Last year we sent her samples from Graham's initial diagnosis and when he was in remission. The reading at diagnosis was 141 and when in remission 0.14. Bear in mind that no disease was detectable at remission by any of the tests done in Melbourne and while there was a 3 log decrease on the PCR test from diagnosis to remission, there was still detectable disease and sure enough, Graham relapsed shortly after. So it is an extremely sensitive test and in Prof MacIntyres'paper again, you can see that the only survivors are the ones that reach molecular negativity. Don't want to beat you over the head with it but this is the most wonderful news.

It was, however, tempered somewhat by the fact that Graham woke with chest pains this morning and an ECG showed ST changes which may indicate a heart attack. He has been transferred to the Cardiac Unit for 48 hours of observation but we are not too concerned at this stage. His pain has subsided and an echocardiogram showed that he has a very small pericardial effusion (accumulation of fluid between the pericardium and the heart) which could indicate pericarditis. This could be caused by the infection or may be due to the radiation and chemo he received prior to the transplant. If so, it should resolve of its own accord.

Even with the effusion, chest pain, his continuing infection and immunosuppressive therapy for the GVHD, today's news of no MRD really is a "modern-day miracle" (thanks Cath for the Fr Bob Maguire quote). He still has a long way to go to be fully recovered but he has no leukaemia! We feel so lucky and thankful and we are not giving up now.