Ali's art

Ali is submitting his matric art today. 4 big canvasses and a sculpture, all of Annabel Vincent, Susie Shave’s delightful and beautiful daughter. This one is my favourite.

He will have the sculpture in the middle and all the canvasses surrounding it. They depict different moods; pensive, passionate (conducting), elated (twirling) and then there is one with just her face v large, done with a broad brush. He’s worked and hard matured considerably, particularly through the frustrations with the technical difficulties with the sculpture. It was completely trapped in a block of plaster of paris twice.

Mocks start next week and he has so much work to do to achieve the outrageously high mark he needs to get a place in medicine.

Whatever he does, I know there’ll always be an easel, jars of brushes and that scent of turpentine in his world, art makes his heart sing.

The weekend has gone well and the only side effect I have is a headache a bit like a vice around my head, which is easy to manage. What a happy suprise!

Family in Mozambique

Mamma Mia

Bristol Myers finally managed to track down their senior executive to sign the document and I received permission to use Ipi yesterday.

A friend at Harvard kindly described how it works in plain English for me and the description of the action of the drug follows:

when you have cancer growing, the body naturally produces cells called T killer cells to fight off the cancer cells. But what happens during the progression of the cancer is that T cells begin to express something called CTLA-4 on their surface which acts as a brake on them and T cells are no longer produced to fight the cancer cells. The ipi drug acs as an inhibitor to the CTLA-4 and thus allows for the T cells to be produced and fight off the cancer cells. My guess is that this will produce some side effects b/c mass production of T cells will not only kill cancer cells but possibly attack other things as well-thus resulting in side effects.

I had the first of four doses today. The return to the oncology department is chilling and raises all the questions about quality of life again. I always feel so robust and well compared to the other patients. Tim and I had a laugh about R 220 000 worth of meds going into my port. It's hard to grasp. I know how lucky I am to have access to this highly sophisticated medicine.

The anti histamine put me to sleep for more than half of the drip time and I have been alternately asleep or drowsy the whole day. Mild nausea is here too.

Let's see what tomorrow brings, but so far so good.

Pear shaped

Things have gone awry.

A new enlarged lymph node was not welcome, but very present. The horrible thing is that, from grisly past experience, I recognise the size and shape of them immediately. A biopsy confirmed that it is melanoma spread, so I had CT scans to see how the rest were doing. They've grown, not dramatically, but enough to require a new approach.

Unfortunately, I need to stop the Dendritic Cell Vaccine for the moment, but will resume it as soon as it is feasible.

Having got permission from Bristol Myers Squib to be on their drug trial and attained permission form the SA drug control board in Pretoria, all that needs to be done is for me to be allocated my 'lab rat' number and they will dispatch Ipilimimab from the US.

There has been much press recently since a big Melanoma congress in Chicago about Ipi and I have been touched on receiving several messages from friends all over the world alerting me to it. This is, in fact, the drug I was hoping to get before I started chemo, but due to limits with the trial process, I had to have the chemo DTIC first and show significant deterioration before I have been allowed access to Ipi on compassionate grounds.

Since this process started, two more glands have popped up, so I'm a bit anxious to start even though I know it'll push me into poor health for the next three months.

So, here I go again. It's 4 drips, one every 3 weeks. With each drip is a big dose of anti histamine and cortisone, so I don't have an allergic reaction. The side effects seem to be less gruelling than the chemo and the biggest dangers are colitis and endocrinal damage (thyroid, adrenal gland..)

The lucky thing is that, as SA is trailing, I will have the Ipi on a trial basis as the cost of it in the US and UK is the equivalent of R880 000 for the 4 drips. This saves the family the debate about whether to bump me off in the interests of their inheritance, or not!

The results from the trials are good and I had my cells tested at the Genetic Cancer Research Centre in Greece and they were responsive. Ipi is hailed as the biggest break through in Melanoma treatment in the last 30 years.

In the interim, the great part of life continues. James is home for 10 days after a tough exam period and long hours of tutor marking duty. He heads off to follow the Tour de France with his friend Zandy Sullie next week.

We had a fabulous long weekend in Mozamique last week. The whole team was together and we had the privilege of walking memory lane with Tim as he showed us his grandparents house in Maputo, where he spent most of his childhood holidays, and Inhaca island. We ate an unreasonable number of prawns and James initiated us with R and R (rum and raspberry). We had dinner at the Costa da Sol with David and Paddy Spence, Tim's mum, Alison's cousin. The restaurant had not changed in a generation and we were treated to a delightfully told history of the family in Mozambique. We were all entranced.

A new challenge and much for which to be grateful.

A million trained dendritic cells at work

Yesterday, I had a million dendritic cells, trained by exposure to those liver tumours, injected back into my system. We had the opportunity to see them under a microscope too. I feel so lucky to be able to have access to this level of highly intelligent medicine.

A new vaccine will be incubated with fresh blood in a months time.

I'm sure the positive energy and hope, engendered by this, is healing in itself.

Dendritic Cell Vaccine

It became apparent that if necessary, I could have the Dendritic Cell Vaccine as well as the Ipi simultaneously. This made the decision making easy. I consulted Dr Ramos, who, while unconvinced about the DCV, empathised with my situation and agreed to go ahead with harvesting the tumours for the vaccine. He is an old acquaintance through my friend Jenny and professor of surgery and master of keyhole surgery of the liver. I know that none of this is coincidental.

I also heard from the Research Genetic Cancer Centre that my cancer cells are responsive to Ipi. This is exceedingly good news.

So, we went ahead with the surgery on Monday. I'm back home now, with four holes and several stitches in my fat tummy and feeling as if I did a million sit ups yesterday. There will have to be a couple of days of teetering around. I am notorious at underestimating the effects of surgery and had planned to teach this morning!

The surgery was scary and successful. Dr Ramos, using his immeasurable skill, managed to extract 2 pea sized tumours from my liver. He had a look around and said the rest of the liver looked normal and definitely not 'riddled '.

They took 20 tubes of blood too and Tim and Nicola did the dash to get the material to Pretoria within the 4 hour margin, while it was viable for making the vaccine. What drama! They almost needed a poice escort. I was so relieved they could go together.

Unfortunately the blood was put into the wrong tubes, so yesterday, they had to take another 20 from 3 sites and Tim did the drive to Pretoria again.

The vaccine is all brewed up now and incubating and should be ready to be reinjected by the end of next week. I am so lucky to be able to participate in this cutting edge technology. It makes such sense to me. The tumour cells have been sectioned and frozen at -70C and fresh blood will be mixed with them to make a new vaccine every month.

There is much to celebrate as it is almost a year since I was given a 10% chance of surviving 6 months. So , a bit like Benjamin Button, I'm getting younger rather than older! A very old a dear friend of the family, who practised as a doctor for 60 years told me never to underestimate the power of prayer. There can't be another explanation.

Doing well

I know it is nearly two months since I last wrote, but on hearing bad news, I chickened out!The family holiday in Plett with the Martin Bashalls just seemed to be the best healer and a bit of escapism seemed to be in order.

It worked well. We had the perfect holiday, not marred by as much as a broken nail. Plett was utterly gorgeous, the children all on great form and the greatest delight was that Francesca and Matthew announced their engagement there with us. What a privilege for us and such a source of delight.

Home again and needing to face some of the less appealing aspects of reality.

The last CT scan showed that the tumours had grown by 9% and that there were some new ones too. I have been feeling fine and just didn't feel like acknowledging the progression. But, further to owning the situation, I've been doing some research and I have two main options now.

They are mutually exclusive so I need to be careful about my decision.

Dendritic Cell Vaccine; I'll need to have a tumour removed, then sectioned and frozen. They then take my blood and train the dendritic cells to recognise the tumour cells as baddies and to attack them. A vaccine is cultured and then injected back. One of Dr Golding's patients is doing well with this.

Ipiliminab: a newly FDA approved drug which has shown good results melanoma patients. It has bad long term side effects and I need to consider the risk reward ratio. Just today, I heard that my cancer cells can be tested for sensitivity to Ipi by the Research Genetic Cancer Centre in Greece and that result will make the decision making easier.

I have had the port put in under GA and it is making it much easier to take the vitamin c drip, as there is no prospecting for veins, so I'll be having that drip twice a week.

Nothing is straight forward.

In the interim, I'm leading a rich and full life. Nicola is back from her trip to Morocco, having had a wonderful time, James has exams in too short a time and after a gory, but glorious morning shadowing a surgeon, Ali has decided that he has to be a doctor. So my wings are clipped as I need to give him every opportunity to raise his marks significantly in 8 weeks. Testing reveals that he has the goods but now we need to create opportunity for the bottom to connect to the seat, frequently and for long periods at a time. For those who know me well, the idea of Al doing medicine does fill me with irrational delight!

The Link at Salvazione school is powering ahead and the children are making very good progress. The challenges of literacy in the language which is not a child's mother tongue are many. Every minute spent among the committed and willing volunteers and delightful children is a healer.

Thank you for bearing with me.