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.