Monday, November 24, 2008

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)

Sunday, November 9, 2008

#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

Saturday, November 8, 2008

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.

Sunday, October 19, 2008

Melbourne here we come!


Yes, we've been given the all clear to head home. November 3rd looks like the date we will leave. The hospital fees have been well above what we expected so the chance to get back in case of any future complications is something we have to take advantage of now. Sam has organised a raffle to raise more funds, check out the web site for details. We have been very fortunate with the donation of prizes. People have been very generous yet again.

I have a week of tests coming up including a final bone marrow biopsy on Tuesday. Still not allowed to eat so hoping as the diarrhoea has decreased, they will allow me back on solids this week. We meet the nutritionist again tomorrow so fingers crossed.

We will miss Seattle, it's a great city surrounded by great parks and views and filled with friendly people, though looking forward to seeing the house and the dogs again, though not the mess they've no doubt created in the back yard!

Current Reading: 'The Honourable Schoolboy' by John Le Carre (this may take some time)
Current Listening: 'Forth' by The Verve (10 years in the waiting!)
Currently Eating: A BLT (in my dreams!)

Monday, October 13, 2008

Oh release me let me go...

Day +68

Back home again - well the apartment anyway. A comfy bed and screaming banshees, what more can you want? I was discharged on Thursay from hospital. I was thoroughly fed up of being inside especially when they are just monitoring moi poo.

Anyway, things have really improved. I've been slightly energised, not quite up to the duracell bunny standard, but I can walk to the clinic and around the supermarket without too much difficulty.

Two weeks left of election coverage. Thankfully! Hopefully all the dirt will be exposed - what there is of it (Obama ran over my dog/McCain has missed a mortgage payment).

The kids have enjoyed getting ready for Halloween. Sam has carved a couple of pumpkins for them. We have spiders and webs ready to go, plus a green hand in a candy bowl who asks if you "Want some candy?". It looks like Jack has chosen to be a skeleton and Poppy a witch. We are going to a friends house in the suburbs so the kids get the full American experience (plus, we love their company - our friends not the kids).

We had a very nice suprise visit from our saviour Alastair Clarkson on Sunday. He is over in the States for a professional development trip. So he came up to Seattle to catch some Seahawks games before he heads to Chicago ("how about those Bears?"). He popped into the clinic along with Hawthorn Captain Sam Mitchell to see us before they leave tomorrow. Imagine a UK premier league soccer player doing the same, they'd be too busy getting their hair done or some boutique shopping.

Current Reading: 'The Honourable Schoolboy' by John Le Carre
Current Listening: 'Endless Wire' by The Who
Currently Eating: "No food for you!"

Friday, October 3, 2008

Release is imminent!


Day +58

Things have improved so much that it looks like I should be released (it feels like that after 3 weeks) on Sunday - whoo-hoo! Can't wait to get back to the apartment and a comfy bed. I'm allowed food again, some rice and a banana. Can't eat much of it though as the gut has to get used to processing food again. I keep seeing all these ads on TV for pizza, deep fried shrimp etc - it's torture. No fat, dairy or fibre (Mmm..I thought rice and bananas contained fibre?) allowed for a while, not sure what's left...gruel maybe.

Been enjoying Season 3 of 'The Wire'. HBO seem to have the best writers, directors and actors available at the moment. I thought it would be a while until a show came along that's quite as impressive as 'The Sopranos'. Thanks to Netflix, Season 4 should be arriving asap. I need to scratch that 'Wire' itch.

Sunday, September 28, 2008

"Hello, Hello, its good to be back..."

Day +53

Sorry for quoting the notorius GG but the lyric seems appropriate. I've been feeling much better in the last few days. Things seem to be settling down gradually. Still not allowed to eat, the gut needs a good rest. I don't have to rush to the bathroom so much which is a relief. The drugs seem to be doing their job though it may take a couple of weeks to really settle everything down and back to normal.

I seem to have a lot more energy at the moment. I'm using an exercise bike every day so that helps. The steroids waste muscle so I need to do something active every day.

Thanks to everyone for your messages of support and sorry I haven't been able to respond to everyone.

Well done the Hawks and Alastair. I listened to the match online (with intermittent vision from the webcam at the apartment). What a great game, I wish we could have been there...hopefully next year.

Current Reading: 'The Honourable Schoolboy' by John Le Carre
Current Listening: 'Bang' by World Party

Friday, September 26, 2008

Hawthorn - Premiers 2008!

Day + 51

Well, they did it! "HAWTHORN has won its first premiership in 19 years, overrunning Geelong to win by 26 points in front of 100,012 fans at the MCG." Well done to all at the club and especially to Alastair. We are so very pleased for you all.

As you can see, Graham is feeling SO much better today and managed 15 minutes on the exercise bike under Physio supervision to try and regain some strength as the high dose steroids he has been on have been wasting his muscles. It is amazing the change that has happened in the last couple of days and it is obvious that the trial drugs are definitely having a positive impact on his Graft vs Host Disease.

I am off to bed now after staying up for the game (Jack made it to 3 quarter time before he had to turn in at 11pm!), so more later. Feeling very happy right now.

Sam xx

Thursday, September 25, 2008

Go Hawks!


Day +50

Graham is feeling much more like himself today, which is a great sign.

He is asking for books and magazines, reading The Guardian online, watching movies and listening to music for the first time since the transplant. And this is all in the last 24 hours. This was one of the most worrying things for me after the transplant; seeing him lose interest in the activities that mattered to him.

Today also marks the half-way point in his 100 days post transplant. Everything else is looking good and if we can just get him over this last hurdle, I know we can all return to Australia together in November.

The other exciting news is that I have managed to get access to view the AFL Final tomorrow through the Setanta Sports' Channel and am going to set up the webcam so Graham can watch it in his hospital bed! We are very excited and wish the Hawks all the best. We will be cheering madly for you to win!

For those readers not from Australia, Alastair Clarkson, pictured above with the players, is the Hawthorn Football Club Coach and stood up for us as soon as he found out how much money we needed to raise to get here for Graham's treatment.

I don't want to get too soppy but he really is a fantastic person and without his support, we would not be here. He has also turned around the Hawks' performance in a short amount of time and it would be a wonderful thing if they can upset the Cats tomorrow.

Go Hawks!

Sam xx

Wednesday, September 24, 2008

Before and After



Day +49

Graham's diarrhea slightly worsened today but the Docs think the volume will go up and down until it fully settles down. The important thing is that the timing is spaced out from about every 10 minutes or so to an hour or more. He gets another dose of Mesenchymal Stem Cells tomorrow and some more Infliximab on Friday so we think he will continue to improve.

I thought I would include some before and after pics to show what a toll this whole procedure has taken on Graham. The first picture is taken on July 6th, Day 0 and the second one is taken on the Day +46, 21st September (which was my birthday). He couldn't even manage a smile for me and I think that says it all. He just feels so worn out by the whole thing but we are confident he is on the mend again and that he will be out of hospital soon.

Thanks for your support and for the offers of air miles. We really appreciate it. Mum is arriving on Monday as we received enough for the one-way leg and will soon have enough to book the return leg.

Sam xx

Tuesday, September 23, 2008

Turning the corner?

Day +48

Happy days are here again!

Graham is a bit better today. His 24 hour diarrhea volume (yes, they measure it) has reduced from 2,200 mls to 970mls. They don't know what did the trick but I think it is the combination of the Infliximab, the Mesenchymal Stem Cells and the heartfelt messages of support that we have received from so many people all around the world.

He had a full body CT and MRI today so it would be great to see that the bowel wall inflammation has reduced (the scan on Friday showed that the lining of his gut from his stomach to his bottom from inflamed) when we get the report tomorrow.

I have also received messages from people wanting to donate their Air Miles to get my Mum over and we think it is going to be possible to get her here next week by using Qantas Frequent Flyer Points to San Francisco and United Air Miles to Seattle.

We need another 34,000 Qantas FF's for a return flight to SFO and another 3,000 United AM's for the SFO - SEA return leg.

If you want to donate Qantas FF's, you can do so by logging into your account and donating a minimum of 5,000 (their rules) to my account and similarly, you can do the same with United. With Qantas, you will have to specify that I am a family member and a Qantas employee whom I spoke with this afternoon said that you could put me down as a Sister-in-Law would as they never check!

Please get in touch for my account details.

I will update tomorrow and hopefully I will have some good news. We are marking off the days till we come home on a big wall calender and Jack said "only 52 days to go" to me today!

Sam xx

Monday, September 22, 2008

Mesenchymal Stem Cells

Day +47

Graham had an infusion of Mesenchyaml Stem Cells (MSC's) today as part of a Phase III Clinical Trial for Steroid Refractory Acute Graft vs. Host Disease. It is a Double Blind Study which means neither the patient nor the Doctors know whether the MSC's or a Placebo are given. We were a bit concerned about this as the MSC's have shown very good results and we really didn't want the placebo!

Well, it turns out that the MSC's have a very distinctive smell and Graham's room was stunk out during the infusion! So much for the Double Blind Study - LOL!

He is much the same today but we have a very positive feeling that he will beat this thing. All the wonderful messages of support that have flooded in today have been very much appreciated and have given us both a boost.

I do have another favour to ask. If anyone has any United Airline Air Miles that they would like to donate to me so I can get my Mum back to Seattle to help out with the kids while Graham remains so unwell, I would be very grateful. Please drop me an email if you can help. A friend of ours here in Seattle (and Australian by marriage), Chris Tarling, has offered me 12,000 and we need 80,000 for a return flight.

Thanks again for your continuing support.

Sam

Sunday, September 21, 2008

Another mountain to climb...


Day +46

Graham is no better today and in fact the diarrhea is worse.

We are very grateful that we are here in Seattle as they have many more options available to us because of their research centre.

If the Refractory Acute GVHD can't be controlled, it will be fatal. He no longer has any sign of Leukaemia but unbelievably he has another battle to fight.

It is very unexpected that he would get Grade IV (the worst) GVHD let alone be resistant to the steroids. We are hopeful that this new treatment will help him turn the corner but we may not know for another couple of weeks.

He is not up to responding to your messages but he is checking his email so if you want to leave a message of support here or send him an email, I know he would be very grateful.

Much love and thanks.

Sam xx

www.adonorforgraham.com

Saturday, September 20, 2008

No Change....



Day +45

Graham had his Infliximab last night and so far there has been no change in his condition.

Thanks to Ruth and Lisa for helping out with the kids and providing moral support.

Will update tomorrow.

Friday, September 19, 2008

Refractory Acute Graft vs Host Disease

Day + 44

Sam again.

Graham's nausea and vomitting has stopped but he has developed very bad diarrhea which is worsened today. He is now considered to have Refractory Acute Graft Vs Host Disease of the Gut, ie; it is not responding to the steriods.

This is a very bad position to be in so they are starting him on a clinical trial as there is no standard form of treatment for this condition.

Although he now has no leukaemia present, this is a very serious situation and if he is going to respond, we should see some improvement in the next 36 hours.

Please keep him in your thoughts and I will update tomorrow.

Sunday, September 14, 2008

Graft vs. Host Disease



Sam again. Day +39

Unfortunately, since leaving the hospital, Graham's nausea and vomiting persisted and his skin also developed a rash.

It looked like he was suffering from Graft vs. Host Disease (GVHD), which is when the new stem cells attack fast growing cells in his body such as the skin and gut.

This is not unexpected and a degree of GVHD is actually wanted as it also means that there is some Graft vs. Leukaemia (GVL) going on which can eliminate any undetectable leukaemia cells that may contribute to a relapse further down the track.

As you can see from the diagram above any unrelated transplants (such as Graham's Cord Blood Transplant) have a higher risk of GVHD but a reduced risk of relapse so the Doctors have a fine line to walk when treating the disease as they want to eliminate the GVHD and allow a degree of GVL.

They did a Skin Biopsy and a Gastroscopy with Biopsy last week and the GVHD has been confirmed.

He was re-admitted to the hospital on Friday to start back on the IV Nutrition as he has lost a lot of weight and has been unable to eat and they started Steroid Treatment for the GVHD yesterday and he should be feeling better soon. Once the GVHD is under control, they will taper off the steroids and watch for any flare ups.

It is disappointing to have this setback and the whole process is much more difficult than either of us had imagined but he is heading in the right direction and I am sure he will be back with you soon.

Friday, September 5, 2008

The Good News Continues....


Sam again.

It's Day +30 today and the good news keeps coming.

Graham had his Day +28 Bone Marrow Biopsy on Wednesday and we got the results today.

The bone marrow cells are all normal and 100% from the unexpanded cord blood stem cells (from Australia!) which means there is no sign of his immune system or the leukaemia. The new cells are working hard and producing Red Blood Cells (RBC), Platelets and White Blood Cells.

It was also the first day that his RBC and Platelets have increased without infusions so all is looking good.

He is still suffering a bit with nausea and fatigue but they are switching one of his anti-viral drugs today that has been wasting his minerals. So hopefully once his magnesium, phosphate and potassium levels are all normal again, he won't feel so tired.

He is also coming off a drug used to combat Graft vs Host Disease (when the new immune system attacks rapidly dividing parts of his body such as his skin and gut lining) as he only has a minor rash and this drug may be causing his nausea.

The picture above is of Zozobra and was sent by our friends Penny, Daniel, Fiona and Ciara in Santa Fe.

Penny says "Last night we kicked off the Santa Fe Fiesta with the burning of Zozobra. In the 1920's an artist started this tradition of burning Zozobra, or Old Man Gloom, who is burned in effigy to symbolically dispel the hardships and troubles of the past year.

Zozobra is a 60+ foot high marionette (largest in the world). Daniel has been involved in building Zozobra since he was small and now we take the girls along to stuff him with shredded paper and to paint him. On the night fire dancers taunt him while he throws his arms around and growls until finally the fire dancer "wins" and sets him alight. For years it has been a tradition to put "gloom notes" into the stuffing of Zozobra, when burned, the hardship/sorrow that is in the gloom note is gone. So, this year we put a gloom note in about Graham’s long tough fight, to send wishes that this will be over soon and you can all return home together as a family and to send our love and very best wishes to all of you."


What a wonderful sentiment. Thanks guys.

Friday, August 29, 2008

Dad's Home!


Hi All. Sam again.

It's Day +23 and Graham was discharged from the hospital this evening.

Yay!

The kids arrived on Wednesday with my Mum and they were sooo excited to have Dad home tonight. Mum said that every time they heard the elevator start up outside the apartment door, they kept saying "It's them, it's them!"

And eventually it was us (after we collected the cache of drugs from the Pharmacy that he needs to take each day) and Dad was swamped in hugs and kisses.

Graham is still feeling nauseous and tired but is much improved and most importantly he is officially engrafted with an Absolute Neutrophil Count of 3,200! You may remember me saying that he needed to reach 500 to be considered engrafted. Well he reached that milestone a few days ago and is now well within normal limits.

So the worst is over and now he just has to regain his strength while being very careful for the next 12 months.

He has lost all the immunity he gathered over his lifetime and as a result is very susceptible to bugs that would have not been a problem in his pre-transplant life. He can't be anywhere there is a crowd of people he doesn't know as they may be carrying germs that could at best really set back his recovery if he was to come in contact with them.

In 12 months' time he will then get all his childhood immunisation shots again. He can't get them before then as his fledgling immune system can't cope with the live vaccines until it has this amount of time to establish itself.

I hope he will be back with you soon but wanted to update you on this momentous occassion. Jack has requested pancakes for breakfast tomorrow morning as a celebration! I told him that was a wonderful idea.

Saturday, August 23, 2008

Shellshocked

Sam again. Day +18

I am sorry to report that Graham still isn't up to making an entry in his Blog.

His Neutrophils have been bouncing up and down since they increased to 60 a week ago. They were at 80 yesterday and thankfully today they have tripled to 240. We are hoping this is the sign that they will now really take off.

He is still really fatigued and nauseous and what I would describe as suffering from "shell-shock".

I figure that he has been through so much what with arriving and expecting to have the transplant, to finding out he had relapsed, to the chemo not working, given 2 months to live and then finding out that the chemo had actually worked and getting the transplant; he just needs some time to process everything.

All is well and hopefully he will be out of hospital before my Mum and the kids arrive on Wednesday.

We can't wait to see them.

Sunday, August 17, 2008

Neutrophils, Glorious Neutrophils!


Sam again.

I am sure you will have Graham back very soon as his Neutrophil count rose from "too few to count" to 60 today! He needs 500 to be considered engrafted but he is on his way so we are very happy and thankful.

His nausea is ever so slightly improved but he still can't even bear the thought of eating anything.

Babysteps in the right direction though.

In the meantime, have a look at what the some wonderful scientists in Melbourne and Adelaide have found.

Saturday, August 16, 2008

Patience




Patience
is the ability to endure waiting, delay or provocation without becoming annoyed or upset; or to persevere calmly when faced with difficulties.




Sam here.

I am trying to channel the virtue of patience but am feeling more like the chickens above.

Graham is now Day +10 and it has been a hard week and a half since the infusion of the stem cells. Much harder than either of us had imagined.

I know you are all wanting to hear from the man himself but he really isn't up to it so you will have to have the summary of events from me and patiently wait for the return of his dry wit.

If you have been reading my updates over at our website, you will know that the nausea persisted after the infusion of the stem cells, so much so, that he became unable to eat and is on IV Nutrition. He lost his hair and is extremely fatigued. He had another high temperature and rigors on Day +8, so they took out his Hickman Line and tested it for the bacteria that had been previously cultured from his blood. It turned out the tip of the catheter was the source of the infection. This is not uncommon. Once the bacteria makes its way into the bloodstream (unwittingly with an injection through the line or directly crossing over from the chemo and radiation damaged gut), it migrates to the tip of the catheter, replicates and creates a little colony.

They continue to take blood to culture in the lab to make sure he is free of the bacteria and not septic. After at least 3 days without any cultures growing, he will be able to get his line put back in, which will be good as he is feeling a bit like a human pincusion. Without the Hickman Line insitu, they have to cannulate the veins in his arms to deliver all the drugs, minerals, blood products and nutrition. They took a pounding last year when he also lost his Hickman Line from infection and as a result they keep collapsing during the many infusions, requiring new veins to be punctured on a regular basis.

His Neutrophils haven't come in yet and the spike in the number of his White Blood Cells on Day +6 didn't continue as an upward trend and I suspect they were probably used up in fighting the bacteria.

Dr Delaney did, however, email me last night to say that the Chimerism Results from Day +7 showed that he does have some Neutrophils (just not enough to be reported on the Complete Blood Count Differential) and they are 100% from the expanded cord. So the transplanted stem cells are doing their job but they just need a bit more time to produce enough Neutrophils for Graham to be considered engrafted.

The last couple of days he has managed a couple of laps around the ward for exercise and does feel a slight improvement in his general condition.

So, in the meantime, I get to practise channelling that patience.

FOOTNOTE: Calling all Publishers

I have received many emails from people saying that they find Graham's battle with this hideous disease very inspirational and some have said I should write a book about our journey. I am in the process of doing this and will use Graham's blogging and other notes I have made over the last 18 months. If anyone has contacts with Publishers, please feel free to put us in touch.

I was spurred on to publish the book by an email I received yesterday from the Finance Department of the Seattle Cancer Care Alliance. It seems we have "almost exhausted" our deposit of $419,000. I am not sure what "almost" means till I meet with them next week but it is pretty certain that we will need more funds to pay for Graham's treatment.

Tuesday, August 5, 2008

I am Radioactive Man

I AM RADIOACTIVE MAN! Yes, last day of radiation today! Thankfully this has all gone relatively quickly. The Cytoxin chemo was rough though and I did feel pretty sick for a few days. The nausea still comes and goes but is increasingly better day by day. Appettite is still pretty poor, anything with a strong smell is very bad news indeed. So cereal and bananas seem to be the food of choice at the moment. And cups of tea of course!

I admit I was dreading the radiation as I didn't know what to expect; unlike with the chemo. The worst part is standing still for 10 minutes each time. A bit like waiting for a bus that never comes...they do have a 'Where's Wally' poster on the wall which takes all of a minute on your first day to find the little striped shirt glasses wearing git.

Unfortunately, the curly hair is still on my noggin, so looking forward to the skinhead thug look over the next few days when the follicles decide to remove themselves once again.

The big day is tomorrow. Day zero. A new birthday!

Wednesday, July 30, 2008

Spinal Tap

Headache, headache, headache. That's why I haven't been blogging in the past week. The Lumber Puncture I had (needle in spine to see if any Leukeamia is present) gave me raging headaches. I think they used to call them Spinal Taps so to paraphrase the great Nigel Tuffnel "this pain goes up to 11". Thankfully I'm over it now and in hospital for the biggy. I've had two days of chemo with one more to go tomorrow. Followed by a day of rest then four days of radiation. I'm feeling okay apart from the times they give me pre-meds for the anti-fungal drugs. It's like being slapped in the face with a large wet fish. You suddenly find yourself half way between being asleep and wide awake - drowsy is possibly the word I'm looking for...horrrible sensation is two others.

Anyway, I've had the pleasure of lovely sis Tracey for the past six days so a nice distraction from all the medical stuff. She was kind enough to bring me 500 PG Tips tea bags, 24 bags of Walkers crisps and enough chocolate to make Augustus Gloop a happy chappy, all craftily smuggled in her underwear - remarkable. Unfortunately, the opium, asian ladies and packet of Hoola Hoops were difficult to obtain at such short notice. Such is life.

A big thank you to the lovely Shelley for the supply of books ('when in Market Harborough visit Waterstone's for the best of books and things' - I knew I should have gone into advertising) and Kate for the lovely gift of a UFO American tour t.shirt and band autographs; which the fiendish Mark Cole has placed on ebay for my fund!

Current Reading: 'Any Human Heart' by William Boyd (thanks to Shelley of Market Harborough, England)
Current Listening: 'Talkie Walkie' by AIR (thanks to BenoƮt Dunckel and Nicolas Godin of Paris, France)
Currently Eating: Fry's Peppermint Cream (thanks to the Simpson's of Corby, England)

Wednesday, July 16, 2008

Ready to go

Just had a meeting with the doctors and they seem very happy. They say I am in a very good position to go ahead with the transplant. There is no indication of any Leukaemia in the biopsy results, which is very suprising. I thought there would be a least a small percentage of nasty blasts lurking around. They did admit that the chemo I had is a new drug so expect the unexpected. It does make you wonder though if other patients had further unneccesary chemo because of early biopsy results indicating an unlikely remission. It looks like they will already change the protocol for this drug which is good news for future patients. I don't wish the last two weeks on anyone.

Good news also from the recent CT scan. The infections have halved in size again, so by the time I get to conditioning (probably around the 30th) hopefully the combination of my neutrophils and strong drugs would have put paid to the infection. Out foul infection out!

Further good news: I have at last finished John Le Carre's 'The Constant Gardener'. What a brilliant writer. Methinks I will have to watch the film adaption again. Though I don't think I can take Ralph Fiennes quite so seriously nowdays after his joining of the' mile high club'. A certain respect certainly (those toilets even in business class are telephone booth size) but the odd schoolboy snigger may have to be suppressed.

Off for a cup of PG Tips and to listen to the pop music of my youth. While eagerly awaiting tonight's episode of 'The Colbert Report' as Canadian rock gods Rush 'from the socialist north' (injoke for viewers of the show) are performing on US TV for the first time in 30 years. Go Geddy Go!

Current Reading: 'The Sparrow' by Mary Doria Russell
Current Listening: 'Upsy Daisy Assortment' by XTC
Currently Eating: Plain Chocolate Digestive Biscuits

Tuesday, July 15, 2008

Remission!

Now what was it I had that was important to remember...Oh yeah! I'm in...

REMISSION!!

Received the news from my doctor today; who was as suprised as I was! Meet with the docs tomorrow to discuss what happens next. Hopefully things will get moving pretty quickly. Both the cords need to be ordered (one from New York, the other from Australia) and expanded in the lab. In the meantime I will have chemo and radiotherapy as conditioning treatment leading up to the infusion. I imagine this will all start at the end of the month.

Time for a cup of PG tips to celebrate. And then a Guiness!

Normal Bone Marrow Slide

Sunday, July 13, 2008

Another week....Another bone Marrow Biopsy

Another week another bone marrow biopsy. The results are getting more positive with each marrow. I am still above the required range to proceed with transplant (have to be within 5% range; I'm at 5-10%) but as the results are more encouraging they want to go ahead with another biopsy on Monday morning. They also forgot one important part of the biopsy (flow results) so there is an element of making up for that faux pas (French reference - more of this later). As you can imagine I just want to get on with it. You can only sit around for so long drinking tea - can't you? Actually I'm quite happy sitting around drinking tea (found PG Tips the other day - yes indeed!) especially when I can watch a show as brilliant as 'The Wire'. I'm getting withdrawl symptoms from the last episode yesterday. 'The Wire' shines like a beacon in a sea of mediocrity. Thank you again HBO television!

Another CT scan on Tuesday to see how the old fungal infection is doing. My cough has gone so it must have improved somewhat. Blood tests are only twice a week now - that saves us $500 a week. As we are self-paying the doctors are very conscious of saving us money. Even the meetings with the docs are only once a week now.

Not much else to report. Sam and I went to the Seattle Centre today to a Bastille Day celebration. Didn't see anyone wearing a beret, striped shirt, string of onions and riding a bike combination; so quite a disapointment really. It all seemed very americanised french (apologies to any French readers out there; that must be akin to saying de Gaulle was a surrender monkey with a big nose and anglo-saxon parentage). Yes, it was a bit crap. Unlike Hawthorn at the weekend who at last demolished some of their demons against Sydney. Well done Alastair and the boys. Great result (always good to beat Sydney at something).

Current Reading: 'The Constant Gardener' by John Le Carre (nearly finished it - honest!)
Current Listening: '10,000 Days' by Tool
Currently Eating: KitKat (goes extremely well with a cup of PG Tips)

Friday, July 4, 2008

4th of July

First day without Jack. We are really missing him. We have just spoken to him on the phone and he is back home in Melbourne safe and sound. The fussy devil didn't eat a thing on the plane. I wouldn't be here now if I had been so fussy as a child; I'd probably be 6ft under in my parents backyard.

Anyway, back to the issues of the day. The day being the celebration of the victory of a war where we beat ourselves. I feel I must offer "Happy 4th of July" greetings to any readers this side of the pond. You were fortunate to escape the rule of a monarch (he was German by the way) who was as mad as a bag of badgers (some would say things haven't changed - I couldn't possibly comment). Looking forward to the fireworks from the roof this evening. All I can say is it had better be good as we'll be missing Seinfeld and Larry David's writing is particularly good at this moment in the series.

I had yet another CT scan on Wednesday and it shows things are the same which the doctors are happy with. I'd be happier if things were improving on the scan - but as my cough has almost gone and I can get on the exercise bike again I can't be too bad (he says as he clutches his chest while falling to the floor).

The bone marrow biopsy has been put back to Tuesday as the holiday means results will be delayed anyway. I've put in a request for the lovely Grace to do the procedure. She has the featherlight touch while poking the lower back with large needles.

We managed to do a few things with Jack before he left. We took him to the Baseball on Monday night. Seattle were playing the Toronto Blue Jays and - unlike the basketball - he was very unimpressed. While I enjoyed it, the low score (3-0 to Toronto) did make things a tad unexciting. The highlight for me was when everyone around me stood up to sing "Take me out to the ball game". This was one of the most surreal things I ever witnessed. I felt like I was suddenly in bizarro world! I took Jack to the Seattle Art Museum on Wednesday. He really enjoyed the more modern works on display. His favourite being 'Mouse on Bed'. Basically a giant black mouse on a white mannequin in a white bed. Nice to see a work of art - cough - appealing to its target audience (the under 10s). It was actually a very good mixture of contemporary and classic works (Warhol, Van Dyck) plus some impressive Native American, African and Aboriginal galleries. Jack was quite insightful into the work of Jackson Pollack "It's a load of squiggles Dad". Brilliant.

RIP Charles Wheeler. A truly great journalist and humanitarian.

Current Reading: 'The Constant Gardener' by John Le Carre (still trying to finish it)
Current Listening: 'Viva La Vida' by Coldplay (stop laughing - Brian Eno has got a really good album out of them).
Currently Eating: KitKat

Sunday, June 29, 2008

Rollercoaster Ride


Been a bit of a rollercoaster ride during the last week. The doctors suggested trying a different form of chemo that could potentially put me in remission. Because of the infection in the lungs I was told the transplant wasn't possible - at this stage - as the infection feeds off the radiation. Also, my chances post transplant were given as a 5% chance of survivng the year. Ho Hum!

Anyway, had another biopsy on Wednesday and now the results are looking promising! The flow is down to 3% and the morphology is between 6 - 10%; down from 25%. I still can't go to transplant just yet as the risks are too high. But at least the last lot of chemo actually had a positive effect. All these early bone marrow biopsy's caused a great deal of confusion. We were all ready to go home and prepare for the end on Wednesday. Then on Thursday everything changes. My chances of survival are also moving upwards now.

I had a further CT scan on Friday and it shows the two spots on my lungs are responding to treatment. One is now half the size while the other has reduced. There is something else that has appeared - they think is blood - so I will have to have another CT on Wednesday to check before we can go to anymore chemo.

I actually feel a lot better than I did last week. My cough has reduced and I don't feel the pressure on my chest that I felt before. My appetite is normal again and energy levels are very good.

The good thing is I can spend the last few days with Jack before he goes home on Thursday evening. We went up the Space Needle on Friday as - at last - it was a beautiful clear day. Also, went to the Science Fiction Museum and the Science Center again. He wasn't too impressed with the Science Fiction Museum; apart from the Death Star from Star Wars. He loved going to the Science Center again as there is loads of hands-on stuff to do. Sam took him kayaking today around Lake Union/Portage Bay - I watched from the sidelines - Jack left it to Sam to do most of the work and she was exhausted when they got back. Hoping to take him to the Baseball tomorrow night as the Mariners are back in town. If he doesn't enjoy the game he'll like the hotdogs!

Current Reading: 'The Grand Illusion: Love, Lies and my life with Styx' by Chuck Panozzo
Current Listening: 'Earth and Sun and Moon' by Midnight Oil
Currently Eating: McVities Caramels (a good dunking biscuit - slightly risky with the caramel center though!)

Monday, June 23, 2008

No Good News

I was waiting to post when I had some good news. Doesn't look like I will be getting any so I thought I'd update anyway. I had the biopsy last Friday and the initial result was inconclusive - potentially blasts of 6 or possibly much less. So that sounded positive.

Then today it seems the results show blasts of 25! Indicating that the chemo has not worked. They now want to undertake another biopsy on Wednesday to make sure.

My doctors will meet with specialists on Wednesday to discuss what to do next.

The results of the Broncoscopy were not too promising either. It looked like two different infections. They are giving me very strong drugs to deal with this, plus, on the good side my neutrophils have returned to help fight the infection.

The treatment we came here may now be out of the question. I may be able to go ahead with the regular cord blood transplant though this depends on whether the pneumonia is responding to treatment. It could be too risky to go ahead.

All things considered it hasn't been a good day.

Tuesday, June 17, 2008

Lung Infection

I've now developed a lung infection. I'm having a CT scan today and a tube down the lungs tomorrow to see exactly what is growing down there. A problem with the lungs now can cause further problems post transplant. They need to clear this up asap.

Now I've just been told that the biopsy reading for the flow which was 9 isn't the one they use to determine the blast count. The morphology result is 17/18. So not good. A slight increase in counts. This doesn't mean the blasts will not go down with the next biopsy. Day 14 biopsy's are not common so they have no data as to what will happen - we have to wait and see on Friday.

I think I must be due some good news at last!

Monday, June 16, 2008

More waiting and Jack

Have been in and out of hospital since last Wednesday with fevers. I was admitted Wednesday and left on Friday. Unfortunately, my temp rose again and I was back in yesterday. They found a bug with the first fever which they are treating with anti-biotics. Still waiting to see if anything turns up with this fever. I don't feel too bad with all this going on; I get a bit warm and an erratic heartbeat occasionally, but generally I feel pretty normal. Cheesed-off - but pretty normal!

Had a day 14 bone marrow biopsy last Friday. The sedative was excellent - I wish I could be on it 24 hours a day. Definitely puts you in a very calm and cosy place and takes you away from all this for a very short while. The early results from the flow came back yesterday and the blasts have dropped from 15 to 9. Good news at such an early stage. I have another biopsy on Friday which will be the clincher though.

Jack is still enjoying his time here. We took him to the Space Needle yesterday but the queue was an hour long to go up to the top so we will go another day. We did stay and do a few things at the fair. We won four cuddly toys for Poppy (dogs and a turtle) so she will be excited when he takes those back for her. She always jumps up and down going "Presents!" when someone has been away.

I'm having a blood transfusion at the moment. I'm feeling strangely invigorated. I can feel it flowing through my veins and my canine teeth are aching. At midnight I fly!

Current Reading: 'The Wasp Factory' by Iain Banks
Current Listening: 'The Singles 92 - 98' by The Verve

Tuesday, June 10, 2008

Still Alive


Still alive and - reasonably - well. Sorry, let the blog slid a tad since last week. I managed to get out of hospital Wednesday evening. The chemo was brought forward so I could get out earlier than expected (fee's start at midnight). Haven't been suffering too much from the chemo. Stomach cramps from the first batch of chemo is the only side effect so far. Appetite and energy levels are very good which is a surprise. As it's almost a week since the last chemo my blood levels have dropped which is to be expected. Had to have a platelet transfusion yesterday as they were down to 7 (150+ is normal); apart from that just having daily blood tests and some work-up prior to transplant: heart tests, teeth check-up etc. Another bone marrow biopsy due on Friday - hopefully this should give some indication of what is happening. Fingers crossed it is positive and we can get going on expanding the cords (this takes 16 days).

Jack arrived on Friday and Sam spent a very tiring day flying down to LA to pick him up. His plane was delayed for a few hours so they didn't get back until after 6 in the evening (Sam left at 6.30am). He was very excited to see Sam - plenty of tears were flowing - and excited to see a new episode of Dr.Who on Friday evening. On Saturday we took Jack to the Pacific Science Center (near the Space Needle). He loved it as there was loads of interactive stuff for kids to do. We went to an exhibition called 'Speed' which allowed kids to build Lego cars and race them as well as other speed type thingys. I was enthralled by the footage of the original crash test human; Colonel John Paul Stapp USAF propelled himself over 1000 km/h on a rocket sled and stopped in 1.4 seconds; low and behold he received a collapsed lung, broken bones and temporary blindness in his deceleration tests...surely a USAF student could have been found with the promise of promotion and the warning of 'this may hurt a bit'.

On Sunday we paid a visit to the Lego shop in Bellevue. Jack was mildly excited. He filled a couple of tubs with Lego pieces and proceeded to construct a vehicle of Brinks Mat proportions; impervious to assault. Quite impressive for a seven year old.

Today we took him to see the Fremont Troll under the Aurora bridge. This is a sculpture under the bridge of a troll holding an actual VW Beetle. Jack said 'that's a myth' when Sam asked him if he wanted to see a troll earlier in the day. He enjoyed posing with the troll (as you can see). We then stopped off at the Chittenden canal locks. A fish ladder is integrated into the locks for migration of fish, notably salmon. This is an amazing structure, unfortunately the salmon knew we were coming so were waving their tails downstream until we left. Actually, we did see one, it was floating on the surface and looking a tad bloated. We shall return my pink friends...oh yes, we shall.

Monday, June 2, 2008

Hospital



Day three of my hospital stay. Seems to be going very well at the moment. I'm feeling well despite the potent chemo they are currently giving me. A little bit of nausea but my appettite is good. Last nights pasta and meat sauce was excellent - never thought I'd say that while in hospital! Today's toasted cheese sandwich was diabolical though - along with a bowl of tomato soup this is my deathrow meal so you can imagine how disapointed I was! - must have a word with the chef.

Time is going fairly fast in here: Reading, listening to music, arsing about on the internet - thank you facebook - contemplating my navel, that sort of thing.

Looking forward to seeing Jack B on Friday. He is very excited, as you can imagine. He has asked to bring his birthday Spiderman Monopoly in his luggage - at least Poppy won't be around to destroy it mid-game! Hopefully, I will be discharged on Thursday so I can be around him rather than just seeing him on hospital visits.

Current Reading: 'The Adrian Mole Diaries' by Sue Townsend
Current Listening: 'Cities in Dust' by Siouxsie & The Banshees
Currently Eating: Mentos

Thursday, May 29, 2008

Chemo isn't Working

video

Had my biopsy yesterday. Which was very easy and virtually pain free. Unfortunately the results are not so good. We met with my doctors this afternoon and it seems the chemo has not put me into remission this time around. I have 15% blasts in my marrow. This was very unexpected and, as you can imagine, very disappointing. It seems another blow preventing me from getting to transplant stage. However, there is still an option open to me. The doctors have recommended a trial chemo that has proven very succesful in getting patients into remission. It will be a chemo that my body does not recognise so hopefully the drugs can sneak attack the disease allowing me a window to get to transfusion. This was the last thing we expected when planning to come over here for the treatment. It seems Leukaemia doesn't act according to plan.

We have arranged for Jack to come over to see us next Friday. A friend from school is flying over with her kids (Hana and Maya) and had kindly offered to bring him along. Jack is in class with Hana so hopefully it will feel like a bit of an extended school trip. I think it is important he is with us now. Sam will certainly enjoy his company again. Even though it seems I will have to be an in-patient for this treatment and won't be able to do much with him; I know he will still be happy just being around us both again.

Tuesday, May 27, 2008

Wating...


Back at home after the long weekend in hospital. Great to get a decent night's sleep again. In hospital, with the regular monitoring and whirr of air conditioning, it is an extremely disturbed night's sleep. Popped in to the clinic today for anti-biotics and a check-up. The doctors seem happy the fever is under control and neutraphils are returning (so am I!). D-Day approaches tomorrow. My bone marrow biopsy is scheduled for tomorrow morning. The hope is that any blasts found that are negative (good blasts will be present as the marrow is rebuilding itself) will be less than the amount showing before treatment. Unlikely that I will be completely free of negative blasts as the chemo was a fairly mild one they treated me with. Fingers crossed my marrow responds as favourably as it has in previous treatments. Shall post tomorrow with the results.

Off to a barbecue later to lighten the mood.

Current Reading: June issue of 'The Word' magazine
Current Listening: 'In Rainbows' by Radiohead
Currently Eating: Blue Tortilla Chips

Sunday, May 25, 2008

Husky Hilton


Hello readers (sound like an agony aunt here). Sorry, been a few days since I last posted. A quite uneventful week really until I spiked a temperature on Friday. Spent most of the day in the clinic having tests and another platelet infusion. The doctors decided to admit me to The University of Washington Hospital as my temperature wasn't letting up throughout the afternoon. So, since Friday evening I have been back into my second home of the last year - the hospital bed. I have my own room which is always nice of course. We could have had a battery pack at home dispensing the drugs - similiar to the chemo I recently had - but as I have no immune system a fever is potentially lethal and the doctors didn't want to take any chances. Good news is I haven't had a temperature since Friday night (It did hit 39c though!) so - I hope the doctors release me tomorrow. This is a dent to the budget at this stage we didn't expect; though of course I understand why they were concerned enough to get me in here quick. Looks like the counts might have started moving; so a bone marrow biopsy is likely later this week.

On a lighter note: Jack's birthday was on Friday, he sounded very happy over the phone - which was very nice to hear. Very difficult being away from him for his birthday. Sam's mum Sue organised a little party for him and 3 friends on Saturday after Auskick (kids aussie rules), he was having so much of a good time with them that he didn't want to speak to Sam when she rang on Saturday - definitely a good sign. Sue's been fantastic with them and they both seem very happy. Knowing that makes this considerably easier.

Tuesday, May 20, 2008

Sunny Seattle Weekend

Recovered from the weekend now. Such a nice day on Saturday that we went to Alki Beach; the opposite side of the bay to where we are staying. Spotted a couple of brave souls standing in the water - with the run-off from the mountains it must still be extremely cold in there. Spotted a Fish and Chip shop - will pop in there next time and see if they can reach the standard of Aussie Fish and Chips. Had a stroll along the beach then waited for a shuttle bus to take us to the ferry back to the city. We gave up after about 45mins of waiting (so that's why everyone drives a car here!) and having to witness the same cars driving back and forth and all seemingly playing the same music...we caught a taxi home. Not quite as dramatic as the ferry but we'd had enough by that time.

Sunday we went over to the lovely (they're reading this...) Ruth and Louis' house for a barbecue. Their daughter Naomi kindly picked us up to take us over to Mercer Island where they live. Had an excellent meal of Salmon and Lamb with the added surprise of a smersh (wasn't that the name of James Bond's Soviet adversary?): a biscuit concoction comprising of chocolate and melted marshmallow - a bit of a revelation. I'm sure the kids would like it. Naomi is off to Hawaii for 10 days so she has kindly let us borrow here car (good job we didn't tell her about the last car Sam drove - Oops forgot they're reading this!). It's nice having the freedom to get around the city and it certainly makes the grocery shopping easier.

I'm feeling very well still. I had a Platelet transfusion on Sunday as they had dropped quite dramatically to only 10 (normal is at least 150) and are now holding at around 30. It shows the chemo has worked as everything has been knocked down. The bone marrow biopsy has been postponed. It would have been a miracle of modern medicine if I had been well enough for it - a tad optimistic methinks. I'm surprised by the amount of energy I still have, usually by this point with such a low red blood cell count you tire very easily. I'm doing plenty of walking and not feeling exhausted by it.

Very pleased that Jack's birthday box has arrived safe and sound. Of course, being the bright spark that he is, he read the customs slip to see what was inside. I should have written down: Slippers, T.Shirt, Socks, Pencils - that would have thrown him. Poppy has a surprise box on the way too and I'm sure Jack will be indignant about it - "Why is Poppy getting a box?"

Looking forward to watching 'Flight of the Conchords' tonight. We have joined a DVD club which, for a mere $15 a month, sends you unlimited films to watch. How good is that? FOTC is another brilliant piece of HBO television featuring 'New Zealand's fourth most popular guitar-based digi-bongo acapella-rap-funk-comedy folk' duo. Very funny and one of the best comedies since 'The Day Today'.

Current Reading: 'The Nasty Bits' by Anthony Bourdain
Current Listening: 'Bowie' by Flight of the Conchords
Currently (thinking about) Eating: Chocolate Digestive Biscuits (fat chance of that...)

Saturday, May 17, 2008

Recovering


A beautiful Summers day in Seattle today. Actually, the last few days have been great. With a clear sky we now have a snowy mountain backdrop behind the Space Needle - stunning. I'm so tempted to get out and about, not impossible, but must be very careful regards coming into contact with people. We had a kind invite to the Mariner's game last night (Seattle's baseball team) from Ruth and Louis' daughter Naomi, and I would have loved to have gone but a bit too risky at this early stage methinks. Hopefully my counts will return within the next 2 weeks and I may possibly get to the Rush concert at the Gorge. That will certainly lift my spirits. Speaking of lifted spirits; great to hear that Hawthorn (Melbourne aussie rules team) won yesterday in a very close game indeed. Sam was streaming the game online and I could see a fist pump the air everytime they scored a point!

My apettite seems to have returned fully which is great. There is nothing worse than being nauseated by just the sight of food...let alone struggling to eat it. I can't afford to lose weight and strength prior to transplant so its a relief it has come back so soon. Apart from a tingling sensation in a couple of fingers I feel very well indeed. Had a few aches and pains earlier in the week which seem to have now gone completely. I even managed some time on the exercise bike yesterday afternoon; which had me sweating like a demon after only a few minutes.

Met with the doctors yesterday and they seem very happy with the way things are progressing. Transplant date is set for late June; though we can hopefully move this forward if I recover quicker than expected.

Think I'll pop out and enjoy some sunshine...

Current Reading: 'The Constant Gardener' by John Le Carre
Current Listening: 'Dead Bees on a Cake' by David Sylvian
Currently Eating: Cheese and Tomato Bagel by Sam

Wednesday, May 14, 2008

Chemo's Finished



Hello. I'm back again. Now the chemo has finished so have the anti-nausea drugs so not feeling so drowsy anymore. Trouble is, now it seems to have had the reverse effect; so that last night I only slept for about 3 hours! As you can no doubt not see, unless you possess the eyesight of a Peregrine Falcon, the screen shot of my counts above now indicates that I am neutrapaenic. My counts have dropped, so now is the waiting game for them to return and have another biopsy to see if I am in a good remission phase again. This will hopefully only take a couple of weeks. Then we can start the transplant procedure. The chemo hasn't hit me too hard, which was the idea really, not to knock me around too much before a nasty dose pre-transplant. My appettite is okay and I don't feel too exhausted by it. I must admit time seems to be dragging somewhat now that I can't really get out anymore. Thankfully, had some 'Top Gear' (the UK TV show - not illlegal substances!) to watch on DVD to keep me in good spirits. With no HBO channel in the apartment you find yourself searching over 70 stations in a desperate attempt to watch a least one reasonably good show. Okay, I admit Anthony Bourdain's 'No Reservations' is excellent but he's a diamond in the rough. Or should that be rough diamond in his case? If you've read his books you know how cool this man is...and genuine. Highly recommended.

Current Reading: 'It's Not About The Bike' by Lance Armstrong
Current Listening: 'Snakes & Arrows Live' by Rush

Sunday, May 11, 2008

Knocked out

Sam here.

Graham has been knocked out flat for the last 4 days from the anti-nausea drugs, hence the lack of posts. He isn't sick anymore but all he can do is sleep..... see Exhibit A below:


I am sure he will get back online once the chemo is stopped tomorrow and he comes off the anti-nausea drugs. So stay tuned.....


Thursday, May 8, 2008

Nausea


Not feeling so good today until we got to hospital. Thankfully they gave me some IV fluids containing anti-nausea. Perked up a bit then. Had some lunch and was ready for a sleep - these fluids make you very drowsy.

As you can see from the picture above it was Mother's Day breakfast at St. Leonard's School today. Sam's Mum Sue filled in and I'm sure she appreciated having breakfast made for her. Jack did ask Sam the other day if she would be there for next years breakfast? We certainly hope so!

Wednesday, May 7, 2008

Chemo Starts

Started chemo treatment today as an out-patient. Had an initial dose at the clinic; now carrying around a bag which will administer the chemo for the next four days. A bit like a reverse colostomy bag. Was feeling a bit nauseus earlier. Starting to pick up a bit now. Managed to eat some dinner okay as well.

Went out earlier to meet up with a friend of a friend; the lovely Kate or Batty as she is also known! She is from the UK and over here with English rockers UFO keeping them on the straight and narrow and also selling some merchandise for them. I thought I'd pop round as the club is only a few minutes walk away and say 'hello'. She was kind enough to put me on the guest list for tonight as the gig is sold out. I'm feeling up for it and as my blood counts are still high enough I'll head over there later. Be good to see them again. They were one of the first rock bands I ever listened to back in my teens.

Tuesday, May 6, 2008

Dr Hickman

You didn't think I'd keep up this now daily blog did you...no, neither did I! Had a great night at the Elbow gig last night. Great venue, quite civilized compared to what you get in the UK and Australia. They didn't want to let me in with just my Australian drivers licence for ID. They relented - thankfully. Support act; Air Traffic were very good in a Coldplay/Keane vein. Elbow were magnificent though. Frontman Guy Garvey has such a great rapport with an audience. He admitted how ridiculous encores are, so asked the crowd to sing a song instead. 'Louie, Louie' was chosen and the Seattle crowd did a great job (it had been 'Wheels on the Bus' the previous night in Vancouver).

Had our first visit to the University of Washington Hospital today. After a 'round the houses' bus trip we eventually arrived and registered. Unfortunately Dr. Hickman was not available to do my procedure. What a disapointment! The procedure was fine though; they administered just enough drugs to make me feel drowsy. Usually I'm knocked out. The revelation was the quality of the food at the hospital. It is actually tasty! Ye gods...I couldn't believe it! I'm actually looking forward to it (this opinion may change in the coming weeks!).

We made our way back to the clinic to meet with Dr. Doney regarding the decision on which chemo protocol to go with. It seems a medium chemo enough to stop the cancer in its tracks, to keep me in remission stage, prior to conditioning is the way to go. It also looks like I can administer the chemo at home via a pump rather than being admitted to hospital. Sounds good so far, we'll see how things progress tomorrow...

Monday, May 5, 2008

Daily Update

As promised here is a daily update ("Ooh, how exciting" I hear you cry). Had the usual blood tests this morning. I was expecting to be to admitted to hospital today to get going with the chemo, but it seems the schedule is for the Hickman line (central line to administer drugs/withdraw blood) to be inserted tomorrow morning and then I'll possibly be admitted on Wednesday to start the chemo. We shall see...oh, and the doctor doing the procedure is - wait for it - a Dr. Hickman! I'm just glad his surname isn't Butcher.

Had a long walk today up to the Space Needle/Experience Museum again. I noticed a Post Office up there the other day, so managed to get Jack's birthday box sent in good time for his b'day on the 23rd. Also popped in to Easy Street Records (which just happened to be around the corner). The last of the great independent music store's. Picked up the new 'Fantastic Journey' DVD documentary on the greatest live band of all time - The Who. With 4 hours worth of footage to watch - as I'll be stuck indoors for weeks - this is perfect.

We just met up with Kelly and Pam from Kentucky. Kelly is a transplant survivor on his 12 month check-up. This is a real milestone for those people recovering from a transplant as most complications will appear well within that period. Always nice to come across a success story with Leukaemia.

I'm off to the Showbox Club tonight to see the 'moody and magnificent' Elbow from sunny Manchester. It's my last free night for a while so I'm looking forward to it. I actually saw them in Melbourne last year a week before I was diagnosed with Leukaemia. So it's a bit of an odd feeling seeing them again just as I am about to go back into hospital. A strange coincidence indeed...

Sunday, May 4, 2008

Vol 1, No. 2



Well, here we are at week two already. Time - as always - is speeding by. Had another round of tests during the week: Lumber puncture (or Spinal Tap - thoughts of 'Stonehenge' or the more obvious 'Big Bottom' did not come to mind at the time!) to test for Leukaemia in the spinal fluid (results were clear - thankfully), the usual blood tests and yet another bone marrow biopsy on Friday. We decided the biopsy was a very good idea to see how the Leukaemia had progressed since last week. Unfortunately, the result shows it has more than doubled to 4.7% blasts. Although clinically still in remission - barely - it was possible to start a standard double cord transplant on Thursday. However, I feel the increased risk of relapsing post transplant with Leukaemia present at transplant is a risk not worth taking. So we have decided to have another round of chemo prior to transplant conditioning to kick these cells out. This means we can progress with the expanded cord blood transplant; which is the reason we came here in the first place. It does mean an extended stay of course, but I feel it is not worth compromising the long term results. Not sure exactly what the plan will be for the coming week as we decided late on Friday afternoon to go with this option. I imagine a central line will be inserted tomorrow and chemo will begin pretty soon. This will mean a week in hospital and then recovery at home with daily out-patient visits to the clinic.

Apart from the clinic visits during the week we have managed to get out a few times. We took a walk up to the Queen Anne district for a view of the mountain range that sits behind us (and can't be seen from where we are). It reminded me of San Francisco, tons of steps to reach the top of the hill. An old (for here) school was at the top which has been converted into apartments. Sam, being the brash Australian that she is, unlike me the cynical Brit, asked if we could go to the top for a good view. Surprisingly, they gave us the keys, so we got a stunning look at the Cascade Mountain range. Had a bite to eat at Noah's Bagel's (who seem to offer the best bagel's in Seattle). We then took a walk down to the Space Needle to take the monorail into the city. The monorail seems like a lot of effort for a 5 minute journey - a bit like the one in Sydney. Rather pointless really. I thought it would be full of tourists; seemed like a lot of locals. People really do not like walking here. Though I admit it is made difficult to get around in some areas. If you do try to go for a walk you suddenly find a highway blocking your way with no obvious pedestrian access to the other side - most odd.

I had an email yesterday from the daughter of a fellow patient at the Alfred Hospital in Melbourne to tell me that her mother, Lynne Horvat, had died on Friday. This was extremely upsetting as I became friends with Lynne during my initial hospital stay back in April last year. She had been admitted the same day as me which made things even more poignant. Lynne had also been re-admitted the same time as me in February this year as she had shown signs of relapse following transplant in October last year. I visited her in March to see how she was doing, she appeared well, although her blood counts were starting to fall. She emailed me recently after hearing about the 'A Current Affair' feature on TV. She was still so positive and there were still options open to her at the time. I had been thinking about her on Thursday as I was concerned that I hadn't heard from her for a few weeks. She seemed like my fellow traveller on this difficult journey. Rest In Peace Lynne. I'll miss you.

Thankfully, I had the distraction yesterday (Saturday) of meeting up with the lovely (English and South African) expatriate duo of Ruth and Louis and their daughter Naomi. They treated us to a lovely lunch of smoked salmon bagels (Noah's again!) at their house over in Mercer Island; a very nice suburb. I've never seen so many perfect lawns. I'm sure the neighbours refuse to speak to you if a weed appears. Seriously, it was great to get away from here and spend some time with people not connected with my treatment. We also shared an excellent Japanese meal with them. So an Indian meal to say thank you is on the cards when I get out of hospital (amazingly, peshwari nan bread is available here; if that can't inspire me to get well - then nothing can!).

Had a wander up to the Experience Museum today (pic above). I was tempted to cross the freeway like a game of 'Frogger', instead I behaved responsibly and spent 10 mins trying to find a crossroad. The museum is excellent. They change the Hendrix exhibition every two years (they have enough exhibits for the next 100 years - as we won't live to see this you'd think they would hold a larger exhibition?). Guitars, whole and in fragments, lyrics and some stage outfits on show (the butterfly outfit from the 'Isle of Wight' show). I also enjoyed the 'Grunge' exhibit plus some local metal band stuff (lot's of obscure albums I remember buying in the early 80's) and seeing some of Heart's old costumes. I could have got my hands around Nancy Wilsons waist - now there's a thought! The Science Fiction museum is next door. Loads of costumes, props and models from Star Trek, Terminator, Blade Runner and - oh yes - Logan's Run and the original Planet of the Apes. There seemed to be a complete absence of British Sci-Fi until I came across a can of 'Red Dwarf' lager and the Cat's costume (complete with golden pointy boots). One of the best things I saw was a poster for 'The Rocketeer'. A brilliant pastiche of art deco advertising.

I'll try to update daily from now on. Promise.

Current Reading: 'I Me Mine' by George Harrison
Current Listening: 'Exciter' by Depeche Mode
Currently Eating: Crab Sushi Rolls

Friday, April 25, 2008


Vol 1, No.1



After a relatively easy flight from Melbourne to LA (and catching up on three films on my must see list: 'There will be Blood', 'Atonement' and 'No Country for Old Men') we arrived in Seattle. Though our bags arrived on the following Seattle flight?!? Most odd. We were then offered our first ever free taxi ride by 'Happy' from the Sudan. And, no, we didn't accept his generosity!

Anyway, let's get up to speed...

We seem to have had a productive week so far. Meeting the doctors concerned with my case. Blood tests, health check-up's and today a bone marrow biopsy which, thankfully, was far less painful than last time around. So early next week we will know if I am still in remission and if we can go ahead with the operation. If not, we will look at other options. The blood results are looking good though so I am hopeful we can proceed as planned. Next week is more tests and meetings concerning nutrition, food handling etc...

Seattle is very impressive so far. Really enjoying being here. I think the fact that I feel so confident in everyone I have met so far is making me feel very much at ease. The hospital is incredibly efficient, organised and obsessive about cleanliness. The people you meet are very friendly. The food is very good and the coffee very strong.

We have a free weekend with no hospital appointments. So I think a visit to Pike Place Market is in order (oldest market in the US and more exciting that it sounds), which is a labyrinth of stalls, shops, cafes etc, along with a visit to the Experience Museum. Designed by Frank Gehry and dedicated to Seattle's most famous son - not the suicidal one with the harpy wife, rather - the genius of James M. Hendrix. I see there's Hendrix karaoke so may have to embarass Sam with a rendition of Foxy Lady, then again...

Current Reading: 'I Me Mine' by George Harrison
Current Listening: 'Pocket Symphony' by AIR
Currently Eating: Honey roasted cashew nuts