Friday, August 29, 2008

Dad's Home!

Hi All. Sam again.

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


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


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


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!