Compassionate Funding declined.

My haematologist just phoned and postponed my meeting with him until next week.
The reason being that the drug company no longer will supply Adcetris on compassionate grounds.

Next step is for the medical panel to meet next Wednesday and put an application for exceptional case funding to Pharmac. Word on that should be back late next week or early the following week.

We are not too hopeful as the drug is so expensive, however they may ask for funding for only half a course to reduce costs and increase the chance of approval.

I made sure he understood that Sarah and I believe this drug to be my best hope and that if all else fails we are prepared to fund it ourselves.

Next Thursday we will touch base for an update and I'll be given another couple of units of whole blood as I seem to be slowly winding down energy-wise.

I've been flat out using what energy I do have to finish jobs around the house and workshop.
On Tuesday I did a wheel alignment and suspension setup on a Ferrari F430 Challenge race car.

I had a volunteer doing all the spanner work for me and I just pointed at things and told him what to do :)  (A big thank you to Glen Clemas for all his help.)


Today I'm running power cables and conduit out to the new garage. Although I might wait for the weekend to secure all the conduit, as I will have someone to hold the ladder.  :)

...Ron

Life in limbo

Sarah and I met with the haematologist last thursday. We were hoping for some news.
There was none. No word from the drug company at all.

We are hoping that they will supply the drug on compassionate grounds and include me in the clinical trial. My Doctor seemed less positive that this would be the outcome than he was earlier the week before.
There are other avenues.. A process whereby a team of experts on a special panel, apply to pharmac for funding (I feel this to be unlikely to be approved due to the high cost).
Another option may be to pay for the drug ourselves from my life insurance.

I have another meeting with haematology this Thursday for an update.

I've been working with a diabetes nurse to try and rein in my high blood sugar counts that are a direct result of the prednisone. We have been playing around with different  balances of the drugs metformin and gliclazide, and seem to have found a happy balance after a few failures.
Net result is I am now putting on weight slowly and have more energy.

For some reason my blood counts have also remained a lot more stable and are not dropping every week like they were. This means that although I'm still quite weak and fatigue with very little exertion, I can do a lot more than I could in previous months. I'm able to go for long walks and perform my day to day tasks without too much discomfort. I can't see me being able to work on cars again for quite some time though.

I had a thoroughly enjoyable day of motor racing last Sunday 4th at the Shelly Bay sprint.
I had made it a goal to be there a couple of months back when I was stuck in a hospital bed.
Thanks to a small team of helpers I was able to get into the car and drive over the course fairly briskly.
I did give myself a bit of a fright on the practice run as I was so unused to the power and speed.

I did two more runs after that, each one faster, before retiring for the day and going home to rest with both myself and the car still intact.
The end result was fourth over-all and 2nd in class. Not bad for a guy that's been driving a hospital bed for most of the last three months!  :)

A big "Thank You" goes out to my team of helpers and crew, John Raptis, Mark Scanlan, Jacob Boyd and of course my wife Sarah who supports me in every aspect of my life.

I'll post some video footage up as soon as I find the time to edit it. (We had three cameras mounted on the car for my last run).

..Ron

A small team of helpers was required to help me get in and out of the car
and keep things running smoothly

Lining up ready to run (about to do a "burn out" to warm the tyres)

On the start line with the clock counting down.