Ed Weston - teacher, poet, artist, mentor, chef and friend

In December 2017 Ed Weston was diagnosed with Haemalytic Anaemia, a blood disorder. After a week in hospital he was discharged and his condition was treated with steriods. At that stage the cause of the disorder could not be identified, in spite of a range of tests and a weekly blood test. Finally, at the end of January 2018, Ed underwent a bone marrow test which revealed that his diagnosis was an aggressive form of cancer - Mantle Cell Lymphoma - (a non-Hodgkins Lymphoma).

His treatment by steriods was continued until the beginning of August when he underwent chemotheraapy on a programme of six sessions each three weeks apart. After the second session the treatment was discontinued and in mid September a new four day chemotherapy programme was introduced which led to Ed being hospitalised for five days with a seriously compromised immune system.

Other treatments were discussed e.g. radiotherapy or surgery and removing the spleen. However, after a number of further tests both these options were ruled out and he was informed that his life expectancy would probably not extend much beyond Christmas, 2018! He was referred to the local Hospice and told he was now under their palliative care.

At this stage he was also informed that the ONLY alternative treatment available was a non-funded drug called Ibutrinib - a directed drug therapy - at the ycost of $7500 per month.

After considering the options Ed and Joanne made the decision to commence treatment with this new medication, which began on the 09.11.2018. At this stage it appears that the treatment with Ibutrinib has improved his condition. In addition to this treatment the specialiast has also decided to give him a further three sessions of chemotherapy.

The reality of the situation is that without this treatment Ed's life expectancy remains in the balance!