Photo Montage of Graham's Life

Hello All,

Graham's Memorial Service on Fri 10 July was lovely and I wanted to share with you the photo montage I made for the ocassion. Thank-you so much for you words of support. They mean so much to us all.



Sam xx

Graham is gone

Graham pictured with Jack and Poppy as he celebrated his 44th Birthday in hospital on Monday 22nd June 2009.

Dear friends,

It is with great sadness that I am writing to tell you our dear Graham passed away peacefully at 1:30pm on Thursday 2nd July surrounded by his family.

He succumbed to a chest infection that worsened over the weekend. He was in no pain and we had time to say our goodbyes. Graham remained his cheerful self right up to the end, telling us he was fine and asking for cups of tea! He talked with the kids and my family and then when they went outside for a break, I held him in my arms, he turned his head to the side, closed his eyes for the last time, took his final breaths and I watched as the pulse on his neck faded away. One of Graham's supporters sent me this poem and although I am not a religious person, it describes something of how I feel:

God saw you getting tired,
When a cure was not to be.
So He wrapped his arms around you,
and whispered, "Come to me".
You didn't deserve what you went through,
So He gave you rest.
God's garden must be beautiful,
He only takes the best
And when I saw you sleeping,
So peaceful and free from pain
I could not wish you back
To suffer that again.

Thank-you for your love and support over the last 27 months. Thanks to all his supporters, we were able to have this precious time with Graham that will be in our hearts and memories for ever.

Graham's funeral will be held at 2:30pm Friday 10th July at the Boyd Chapel in Springvale Cemetery, followed by the burial. Refreshments will be held at the Mulgrave Country Club from 4-6pm. We request no flowers but donations can be made to the "a donor for graham" fund via the website and envelopes will be available at the chapel.

Online condolences can be left here or by clicking the comments link below.

Sam, Jack & Poppy xxx

One foot forward (then again...)

Day +300

Hello again in blogland.

For the past two weeks I have been back in hospital. Lots of tests but not much in the way of answers from the Docs. My legs feel very weak, especially the right which is giving me a pins and needles sensation. I have a nerve test tomorrow - then hopefully some answers should be forthcoming.

I think they've run out of ideas. They asked me yesterday if I'd been to Africa recently. Doesn't fill you with much confidence does it? They are also hesitant to biopsy the spots on my spine. On the plus side the few days of steroids have now finished - thankfully.

Currently watcing episodes of 'Ever Decreasing Circles' to cheer me up. Richard Briars is a comedy god!

Current Reading: 'Lunar Park' by Bret Easton Ellis
Current Listening:'Insurgentes' by Steven Wilson
Currently Eating: Chicken Crimpy Biscuits

Graham faces another setback

Day +294

Sam here.

As I said in my most recent email update, we are busy with the kids, work, hospital visits and are getting our back lives on track. Since Feb this year, we managed to get away at Easter with the kids; Graham and I went to a friend's wedding in the Dandenongs and even got to stay overnight in a lovely B&B without the kids (thanks Marianne!). And we were planning on travelling to Wollongong to visit the new addition to our extended family, Baby Connor Macrae.

Unfortunately, this state of affairs has been upset and Graham was re-admitted to hospital a week ago as he was having trouble walking. They have done all sorts of tests and once again, he has the Doctors stumped.

MRI's of his spine show inflammation of the spinal cord (hence the lack of mobility) but no-one seems to be able to tell us what is causing it. As of today, they have ruled out any sort of infection or a relapse of leukaemia and think it may be our old friend Graft vs Host Disease. If this is the case, Graham will be one of only a handful of people to have ever suffered from GVHD of the Central Nervous System. He certainly likes to take the unconventional route.

They re-started him on high dose IV steroids last night and we hope to see some improvement within the next 72 hours.

I will keep you posted. Please keep Graham is your thoughts.

Sam xx

'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