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.