The sun shines brightly today

I had a  good meeting with my oncologist yesterday. He's worked out a treatment strategy and I'm going to start this in the next few days. I'm very hopeful and confident that the various medicines will be effective.

I was also extremely touched by the following student-led effort on my  behalf. A group of Engineering Science students are planning an inter-department Engineering themedbake-off competition to fundraise for the Pullan Trust. The bake-off will be open to all students from the Engineering Faculty.  There will be prizes for each department, as well as overall prizes. I know from past experience how good some of these students can bake and how inventive they can be in their designs. I can't wait to see the photos.

My thanks again go out to all of you supporting me and my family in this time of need.

Monday Morning and a new week begins

Another week begins and things still seem to be pretty much under control with the small cocktail of drugs I am taking. Had my busiest weekend yet but did not even leave the house. I can't recall the last time I have ever had so many friends and family visit, particularly on the Sunday. It was a very pleasant day. Xanthe got to go and have a sleepover with Zeke at his friends house on Friday night and that made her very happy, especially since she had not seen Zeke all week as he had been skiing at Turoa.
I think things will settle in to a bit more normality for the kids now as Zeke is back into his morning weightlifting training and he is helping as a stage hand for his school production for the rest of the week. Evidently the biggest challenge today may well be laying wallpaper which should be very interesting for all involved (YouTube I am told will be called in to the rescue).
Xanthe is looking forward to another sleepover at her cousins.
I am still awaiting news of treatment options for me so am having to be very patient. Patti meanwhile continues to keep the whole house running smoothly as is her way.

I am beginning to get an appreciation of how far and wide this blog is being read as I get emails, phone calls etc from very varied corners of the world. Again I thank you for those.

Pullan Family Trust

From the Trustees of the Pullan Family Trust

Dear Friends and Colleagues,

As many of you will already know, we were deeply disturbed to learn a few weeks ago that our close friend and colleague Andrew Pullan has been diagnosed with metatastic melanoma.

Since that time colleagues within the Department of Engineering Science have established a Trust called the Pullan Family Trust and this communication from the Trustees of the Trust (Rosalind Archer, Andy Philpott, Mike O'Sullivan and David Ryan) serves to announce the formal establishment of the Trust. The purpose of the Trust is to allow the Trustees to seek gifts and donations which can be applied to the beneficiaries of the Trust (being Andrew and Patti and their children Zeke and Xanthe). The Trustees wish to acknowledge and thank the law firm Duthie Whyte, and in particular Nigel Harrison as a partner of that firm, for drawing up the Deed of Trust without charge and also allowing us to use their Trustee Account while the Pullan Family Trust was being established.

Over the past few weeks Andrew has undergone further tests. Some of you may have read of very recent significant advances in the treatment of melanoma and we are all hoping that Andrew may be able to access one of these trials as part of his treatment plan. While a treatment plan has yet to be decided and there remains uncertainty about both potential treatment costs and places where treatment might be obtained, we have sufficient information to know that the cost of treatment could exceed $250K. As Trustees we are therefore setting our initial fundraising target at NZ$250,000. As soon as the true costs of treatment become clear we will communicate again and provide updated information.

Andrew has recently launched a blog at http://andrewsrecovery.blogspot.com/. Those who want to follow his progress are welcome to check that site for updates. He now has three long posts on there that explain what's happened to date and he intends to provide updates in the future.

The online fundraising happening on https://www.givealittle.co.nz/cause/AndrewPullan and also directly to the Duthie Whyte Trust account has been amazing. The generosity of friends and colleagues of Andrew's in NZ and beyond has raised more than $24,000 in little more than 2 weeks. The "givealittle" site remains active. Donations via that channel do attract a small overhead. If you wish to donate, and can readily deposit funds to a NZ bank account, please contact Rosalind Archer (r.archer@auckland.ac.nz) for the bank account number.

As Trustees, it is our intention to communicate on a regular basis with all Andrew's friends, colleagues and supporters. For this purpose we are creating an extensive emailing list and would welcome names and email addresses of any who would like to receive this regular update. Please pass this communication on to others who know Andrew and email Shobha on s.herle@auckland.ac.nz if you would like your name added to the email list. In these updates we will keep you informed of Andrew's progress and also progress with our fundraising activities.

Kind regards,

Rosalind, Andy, Mike and David.

Another week on

In one sense it does not seem like too much has happened or changed recently but I know that is not the case. Behind the scenes I know there has been a lot of action with tests, forms, paperwork, referrals, home visits etc, not to mention the fact that each day has bought a new round of visitors coming to see me from far and wide. I have been spending most of my days up and around so things seem to be in balance at the moment.
I have enjoyed meeting with my various visitors discussing anything or just nothing in particular - the perfect way to be at least as far as I am concerned.
The Pullan Family Trust has now been launched and the trustees of this Trust will be communicating directly with any and everyone interested in the goings on in this trust. If you want to be in the loop on that send your email address to Shobha at s.herle@Auckland.ac.nz

Thank you all again for you txts, emails, visits, thoughts, prayers and good wishes.

Another outing for me

This morning I managed to take Xanthe out to the movies with Patti, which is a good indication that all the meds I am taking are doing their job. I have enjoyed the many cards, flowers and visitors that I have had/ received. Zeke has gone off with some friends for a couple of days skiing and he tells me the weather is perfect at Turoa and there appears to be plenty of snow, so I am sure he will have a blast.
I must say that I have never been good with names so only associate the meds by what they do and the shape of the pill or bottle. I can easily imagine people getting very mixed up about which medication to take when. For me, it is somewhat ambiguous to have a pill to take 3 times a day - I learnt yesterday that that particular pill was to be taken before meals and not every 8 hours. Boy the (little) things they don't tell you.

A quick update

Just a quick update to say that I continue to feel better on my new drugs (steroids and pain meds). I managed to drive myself to see my son Zeke compete in a weightlifting competition. This is his first year competing and I had never seen him lift before so it was a real pleasure being able to watch his competition. I also managed to spend more time up and about yesterday and enjoyed the company of some more visitors.

A small dose of good news

The results of the head MRI are in and they are clear (I have to add that I am sure some of you were cheekily thinking 'we knew he had no brain'). The clear MRI is a tick in the right box for me. Also, the new pain meds are doing their job. One of the pain relief 'booster' pills I took yesterday for the first time made me feel very strange. I couldn't quite describe the feeling and one of my visitors suggested it was like drinking too much. I don't have any experience of that but I did ask why anyone would do this to themselves. My visitor said that when they get to the drunk-too-much stage that they always promise themselves they won't do it again. I had to laugh.
I seem to be getting stronger but am taking it very easy. On Monday I go for blood tests to see how things are going inside. Meanwhile my international team of helpers is continuing to work hard on my behalf.
I have enjoyed reading the comments on the blog - thank you for your comments, good wishes and prayers.

Contact details

I'm one of Andrew's colleagues at the University of Auckland. I set this blog up for Andrew. He's asked me if there's anyway I can get email address for people leaving comments - unfortunately the blog software does not record them. If you are leaving a comment and would like to leave your email address can you send it to me - r.archer@auckland.ac.nz?

Thanks.

Reality Bites

Since my last posting I have talked with a number of people and received a lot of information. It became clear there were several theoretical options available to me, the standouts being a BRAF inhibitor and a drug called ipilimumab (also known as Yervoy I think). I went to see the local melanoma expert last night and it was pretty apparent to him that I was not in good shape as I was clearly in pain and discomfort. A fairly simple exam revealed a rather swollen liver and he has now put me on a combination of steroids and stronger pain meds. This should allow at least part of my old self to surface again.
We discussed getting onto a BRAF inhibitor drug trial. There are no open trials in NZ and one that was sounding promising in Sydney cannot take non australian citizens. This leaves the option of trying to buy the drug but this is challenging. The drug is undergoing approval processes which means there is very little access to it at the moment. This will change once licenced but it is unclear when this will occur. At the moment several people are trying on my behalf to get me some access.
The other drug ipilmumab cannot be considered an option at this stage as my liver is too compromised to be able to handle it. I am also too unwell to travel to any overseas trial and it is unclear what those trials should be as there is little evidence to suggest any really good ones at this stage.
So the current plan is to remove my pain burden which should improve my energy levels so I can function more effectively. And I await one of my international team of Helpers to work wonders and deliver up an appropriate BRAF inhibitor for me. Good luck to them - I know they are working hard for me and I am very grateful.

Genetic test results are in

It has been almost 3 weeks since I delivered my sample for genetic
testing, but my BRAF test results have finally come back. Evidently
there are 4 markers that they were looking for, and I am strongly
positive for one of them (the 600K). This is good news, as I am told
there are good treatment options for this, some of which appear to be
available in NZ. I will be seeing the Head of the NZ Melanoma Unit next week and will have more information then on the next steps.

And The Wait Continues

Well I have just heard that my test results will now not be available until Friday sometime. I am clearly being taught a lesson in patience I will update the blog over the weekend by which time I really do hope to have some information to report.

Test Results Due Soon

It has been a long few days as I await the test results - they seem to have taken such a long time, but I know that the ash cloud has had an impact on this. I have been advised that they are due tomorrow, although there is no indication of time. I am hoping these results come out the right way for me (actually more than just hoping - I am really overdue for a bit of luck with this). Irrespective of the results, there are good pathways forward for me, and I will be hoping we can start moving forward very soon.

I am continually kept upbeat by the emails and support that I have been recieving from all corners of the world - thank you all. Fingers crossed for a good outcome tomorrow - watch this space.