Week 42 – CMV up again.

This week’s blood tests results included a little surprise.  In the main the results were still pretty stable.  The Red Blood Cells (Hb) had dropped a little to 88 but the doctors tell me this will bounce around  somewhat and it is not unusual to require a monthly top up with red blood cells for quite some time in the future.  My last blood transfusion was a month ago so I am expecting in the next week or so I’ll be heading back for a top up.

The White blood cells are doing well at 5.2 in the normal range, platelets have dropped a bit to 52 but are still well above the level requiring a replacement.  My Neutrophils are 3.6 – again in the normal range.  Kidney function (Creatinine) is doing well at 87.  My liver function is in the normal range.

But the CMV (Cyclomeglavirus) has started to get out of control.  This is not unexpected and is a direct result of being on the steroids for the Graft vs Host disease of my gut.

The solution is to increase the anti-viral drug Valaciclovir from 1 tablet a day to 12 tablets.  As with most things this will have another side effect – it is quite toxic on my kidneys.  I will expect to see the Creatinine level increase drammatically – which can be partly offset by increasing my fluid intake.  I have been there before!

If the Valaciclovir does not lower the CMV level then the back up plan is another drug that is IV administered but this will require daily visits to hospital!  Let’s wait and see.

There is no doubt the treatment for Leukaemia is one of many ups and downs and nothing can be taken for granted.  As I have always said it is one day at a time.

I have now also started a rehabilitation program at the Epworth Hospital which involves several sessions around psychology, nutrition, physio and Occupational Therapy.  I am hoping this will help rebuild by strength as my arms and legs feel very weak at present and my muscle mass is almost non-existent!

My normal weight used to be around 84 kgs but I have been sitting on 76 kgs for quite a few months now and have finally seen this starting to climb.  I’m up to 77 now and still climbing slowly which is pleasing.

Weekend activities.

On Saturday we drove down to Cranbourne to visit the Botanical Gardens that were first created there is 1970.  It is a lovely collection of plants imitating landscapes Australia wide and there are some great walks through the  beautiful bushland.

On Sunday we drove up to Dookie to visit good friends Richard and Alice Tallis (and godson Sam!) for lunch and a look around their farm.  The Tallis family have been involved in wine production for many years and now have a fabulous Cellar door where we enjoyed a beautiful lunch before heading up the nearby hill for a great afternoon walk.  It was good to make a trip out of town.

We’v also managed to see a few films lately including Edie and Breath.  Breath is based on Tim Winton’s surf novel and has some great surfing shots in it!




Week 41 – Bloods still stable

I’m in new territory now with a weekly visit to the hospital to have a blood test and my PICC dressing changed, but no consult with the doctor.  The consults will only happen monthly unless there are issues detected.

When the doctor informed me of this I felt a little strange so requested the ability to get the blood results via email after the tests each Tuesday.  He said there was no system for this but gave me an email address to follow up.

So I can report from today’s tests things are still very stable.  Red Blood Cells (Hb) are 97, White Blood Cells 8.9, Neutrophils 7.1, Platelets have dropped a little to 62, Creatinine 85 and Magnesium and Potassium in the normal range.

So this is pleasing and in my mind slowly confirms that things are stable and going well (as the doctors say!).

I have generally been feeling pretty well and we still manage on most days to get around 10,000 steps of walking in, either to the hospital and back or perhaps into the city and back.

We ventured out on Sunday to visit Jan’s parents and family at Bairnsdale for an overnighter – my first this year!  This was a big step as what was once a regular part of our lives (trips away) has become something of a distant memory.  It is quite unsettling to trip out of town and ‘so far away’ from the hospital – just in case it is required!



We had a fabulous time and of course Jan’s mum cooked up a lovely Sunday roast and invited Jan’s brother Andrew, Heather and children over to help out.  We took a farm tour on the Monday morning to check out the drought conditions of the farm.  They are hand feeding all their sheep as pasture growth is sparse.





Other catch ups with friends included:

Peter and Liz Dowling from Wagga (and farmers at Condo).  I have been busy making Liz some pom poms for a mobile she has put together for her grandson.


Our Tassie friends Cat Nichols and Ian Herbert and Rob and Jo Bradley were en route Sat night at the airport travelling to Canada to see their gap year boys.  We headed out to the airport with a few beers to have pizza and watch the Wallabies test vs Ireland.  It ended up being a great night out!


Sunday breakfast we caught up with Ross Williams from Tassie and daughter Anna.  Ross had come over for the rugby complete with a lovely bag of home prepared lamb chops.  Greatly appreciated.


Then on Monday night a surprise visit from our old next door neighbour – Steve Butt.  Steve was in town for a conference and had a spare hour so dropped around for a visit.


I must say hardly a week goes by without two or three friends getting in touch and coming for a quick visit, lunch or even dinner.  It really has been a most unexpected benefit of being sick and stuck in  Melbourne, but one that has certainly helped keep us connected with our friends and that has made a huge difference to my recovery – thankyou!

And finally another masterpiece done – thankyou Darren Wallace.  A good challenge.

And the bonus is we have found a new home for the puzzles – both our local library at Docklands and the Peter Mac library gladly receive gifts! A good re-cycling option.



Week 40 – Meeting with Amit Khot

Last week’s blood tests showed some positive results.  My doctors have indicated that not only is my leukeamia in ‘deep remission’ but the blood counts are relatively stable with Hbs up around 100,  Wcc and Neutrophils in the normal range and my platelets are climbing – around 81 at the moment.  As I’ve mentioned before the platelet count is perhaps the best indicator that the Bone Marrow is working as it should, producing new blood cells.

The steroids seem to have knocked the diarrhoea over and apart from some abdominal pain from time to time my gut seems to be handling the GVHD pretty well.  Let’s hope this pattern continues as I start my weaning process from the steroids.

Today we met up with Head Consultant Amit Khot.  He was once again pleased with the blood results saying everything looks very promising at this stage.  Results were as follows:

Hb – 99,  Wcc  11.9,  Platelets 81, Neutrophils 9.2 and Creatinine 87.

He now only requires to see me on a monthly basis and does not think my blood results will change radically over this time.  He indicated it could take up to 6 months for the Red Blood cells and Platelets to recover to the normal range but did indicate that for many patients they don’t actually make a full recovery.  He said he’d be happy with Red Bloods Cells being stable at 100 or slightly higher.

The weaning process from  the steroids will take somewhat longer than I had expected with a drop in level every two weeks rather than weekly.  All things going well this will take me out to mid August (almost 12 months from diagnosis) before I will be off the steroids and cyclosporin.  Oh well, just keep on taking the drugs!

Catch ups

We seem to have had quite a busy time catching up with friends over the past week.




Elizabeth Balderstone (Dub) called in for a cup of tea on Thursday.  I haven’t seen her for a few years and this was quite special.



I had two ‘aviation days’ on Thursday and Friday.  Firstly Rick  Pegus from Navair in Sydney had flown my plane down with a group of people attending the Rugby League State of Origin.  My plane is also being extensively used (out of Bankstown) for aeromedical work  where seats are removed and a stretcher is fitted for transporting  ill patients across the country side.  I was keen  to have a look at the plane as I had not set eyes on it since last August and wanted to see if there had been any noticeable damage from the new operations.  All was well.

And Chris Cabot from  Wagga Air Centre was in town Thursday night/ Friday morning with a charter in Paul Mara’s TBM 850.  This is a beautiful plane and I couldn’t resist the temptation to run  Chris out to Essendon and have a sit in the aircraft.  It was good to catch up with Chris – who also advised me that Mark Wallace (his aircraft engineer at Wagga) was in the final stages of palliative care for melanoma.  Mark was first diagnosed at about the same time as I received my diagnosis.  Unfortunately Mark passed away last weekend – a very sad time indeed.


Jan was keen to visit the new MoMA exhibition at the NGV so that filled in a few hours on Friday.  It was full of very recognisable exhibits from New York – and lots of people!





On Saturday and Sunday we caught up with Paul and Gioia Giannotis and their boys Oscar and Rohan.  Paul is our CEO of Proway livestock equipment and not only did we have a good social catch up but spent some time going over business matters.

Resized_20180609_125450_6276We spent a great couple of hours at the Melbourne Aquarium and then visited the very interesting ‘Artvo’ interactive art display in Docklands.  This resulted in some  quite stunning photos.



IMG_2828On Monday we caught up with the Rouches and Irvines and managed a lovely bush walk (in the middle of Melbourne at Braeside) before sharing lunch at Hampton.  We enjoyed swapping a few stories and catching  up on family matters.  The Irvines have proudly announced that their daughter Frances is to be married!


Time for a haircut!





Week 39 – Blood tests stable

Friday’s blood tests were very stable as below:

HB 100,  Wcc 7.6, Platelets 55, Neutrophils, 6.1 and Creatinine 90.  No extra products were needed which was a relief.

The doctors have adjusted my steroid weaning slightly keeping me on 40mg/day for the first two weeks before starting weaning.  Hopefully this will not upset the CMV but only time will tell.

Over the weekend we managed some shopping and also caught up with a family and friends.

IMG_2762Claire headed back to Perth with friend Toby for WA’s long weekend.


My brother Tony (the one with the strong immune system) called in for breakfast on Saturday morning.  He was en route from board meetings in Adelaide to Canberra and stayed overnight in Melbourne.






We had morning tea with Julia Ham, Karen and Kate Daniel, Annette Burbidge and Maria Anderson all from Tumbarumba.  The Girls were in town for the Carole King musical and had planned a night at Brown Brothers at Milawa on their way home!


On Sunday we made another trip out to the Point Cook aviation museum to catch up with Jan’s brother Andrew and nephew Ned.  After that we found a park to play with Maggie and Jack who has been visiting the Werribee zoo with Heather and Heather’s Dad, Geoff and partner Anne.

I’m back to hospital Tuesday for more blood tests so will keep you abreast of any significant changes.