An update from Baxter and Fiona!
12 October 2026Baxter has now received the second dose of the now partially-funded treatment he needs. Due to the potential for side effects, the doses are spread two weeks apart and it is always a nervous day. Will he suffer the tingling that may lead to permanent nerve damage? How much nausea? Are there signs of hair loss?
So far he has reported nausea and tingling but so far so good – the tingling has stopped.
We are all cautiously hopeful that the tumours are not getting any worse and may hopefully even start improving.
While having a stoma and a catheter are not for everyone, for Baxter it has been a game changer, enabling him to be able to focus on his wellbeing and not on constant pain.
You’ll likely have seen that he has even started campaigning, so others do not have to go what he went through in taking so long to get a diagnosis. Health New Zealand do say they are reintroducing a face-to-face dermatology clinic in Dunedin, but they have said this before.
You have all done so much already, but if you have a moment consider signing Baxter’s parliamentary petition at https://petitions.parliament.nz/02bdeb53-7678-47d6-458b-08df1dcea7c0?lang=en and if you come across people in your life who have suffered without a face-to-face specialist service, encourage them to speak out. Baxter only has one (very loud!) voice – the more people who share their stories the more we will be listened to.
Thank you again for the support and kindness.
Baxter and Fiona