Ben’s family and I would like to share with you this exciting news - we have reached the target of $84,000 with your help in the last week; in fact, we have exceeded the target (combined total $87,636 between the GoFundMe and St Vincent’s Foundation fundraising pages)!!! We are absolutely humbled by your generosity. Thank you so much!!
As some of you are aware, we awarded $50,000 to the research project by Dr Lucy Gately that aims to identify the clinical, molecular and psychological profiles of long-term survivors of GBM. On 14 May 2018, the St Vincent’s Foundation organised a morning tea to award the $50,000 to the research project and to put a donor leaf on the Donation Tree in the Cancer Centre. The remaining $37,000 will go towards the expansion of a clinical trial by Professor Jennifer Philips to provide early palliative care for 40 GBM patients and their carers. Early palliative care for GBM patient is an area that needs further research, especially given our lived experience in the last few weeks and days of Ben’s life.
Again, Ben’s family and I cannot thank you enough for your boundless generosity, love and care. Your donations will certainly improve the lives of those affected by brain cancer. If you want to continue donating, or if you know of people who would like to donate, please go to https://www.stvfoundation.org.au/fundraisers/khangchiem/a-beautiful-brain.
Please note that the GoFundMe fundraising page will no longer accept donations.
Our utmost gratitude,
Leske family and Khang Chiem
23 June 2018
The St Vincent Foundation has kindly put together a video and secondary fundraising page that will combine the donations raised above $50,000 on this GoFundMe campaign and their page toward the early palliative care study for patients with GBM ($34,000 needed). Please see the links below:
Please share with your networks and via your social media platforms as vital research is needed for brain cancer.
14 May 2018
Update on use of funding:
Firstly, our utmost gratitude to all who have donated thus far, your generosity knows no bounds! Thank you.
After having consulted a number of people, we have decided, with Ben’s blessing, to raise and donate the funds to two research projects at St Vincent’s Hospital Melbourne (SVHM) cancer research team. The research projects are:
Clinical, Molecular and Psychosocial Profile of Long-Term Survivors of Glioblastoma (GBM) – 3rd phase:
This research aims to identify the clinical, molecular and psychosocial profiles of long-term survivors of GBM, and to better understand the quality of life issues faced in survivorship. The purpose is to gain a comprehensive understanding of long-term survivors of glioblastoma, defined as patients diagnosed with GBM who survive at least 2 years. This understanding will provide insights into the patient experience and their care needs. This project is interested in examining 100 tumour samples from long term survivors of GBM to determine whether, in addition to clinical factors, there are molecular markers or genetic profiles to further explain why some tumours respond better to treatments and why some people live longer. There is currently limited published data in this area, and none from an Australian cohort. SVHM has the capacity to undertake the deep genetic profiling tests on site however it is a costly process.
Funding required: $40,000 to $50,000
Clinical trial to test if early palliative care improves quality of life and survival for people with GBM
An expansion of STEP Care to a group of 40 GBM patients to participate. This would allow a specific evaluation of the benefits for people living with GBM and their carers across a range of outcomes including their symptoms, quality of life, information needs and health care needs. The trial aims to know if it can standardize the time for palliative care referral, thereby ensure equity in the quality of care provided to all patients. The project also aims to investigate if STEP Care provides additional benefits for family members of the person who is ill - are they better supported, better informed, and do they have better health outcomes themselves? From earlier research, it has been found that people with brain tumors and their families face a series of particular and unique challenges – different in many ways to those faced by other cancer patients. This trial aims to expand the STEP Care trial to enable a greater focus on people with brain tumors.
Funding required: $34,000
Your donations will go a long way to finding the cure and to providing the needed supports for those affected by brain cancer.
7 April 2018
For details on the service celebrating Ben's life, please click on the below link:
Due to a number of requests, the donation page has been re-opened.
As Ben would say, go gently.
14 March 2018
Ben's family and I cannot thank you enough for the amazing generosity that you have shown with your giving. We certainly did not expect to reach the target in 24 hours and then exceed it in the short amount of time that this campaign has been active.
We are now in discussion with Ben's oncology team to determine the best brain cancer-specific research organisation to donate the money raised. Watch this space.
Khang, Ben, Mike, Fran, Claire and Stephen
1 March 2018
If you haven't already done so, before you donate please see the latest update on this YouTube link
Ben, his family and I are humbled and moved to tears by the love you all continue to show us in the days and weeks we have been here at the hospice.
Please note, this GoFundMe campaign will cease on 28 February 2018.
Khang and Ben
24 February 2018
My beloved partner Ben Leske has been living close to six years with brain cancer, when, on 28 January 2018, he experienced a generalised seizure. Scans revealed the cause to be the continual growth of glioblastoma muFor the ltiforme (GBM). This is in spite of recently being through three cycles of chemotheraphy, Temozolomide. He was then admitted to hospital twice and experienced persistent hiccups for eight days. He went on a cocktail of medications to address this, and over that time, his health and balance have worsened to the point where he cannot ambulate independently and now requires a wheelchair and assistance with transfer out of chair or bed. His left hand is also weak so bi-manual tasks are not possible. On 12 February 2018, Ben was discharged from St Vincent’s hospital to Caritas Christi palliative care hospice in Kew where we hope he will regain some of his strength and health to be able to come home. The hospice is a bridge to home as his home environment is not suitable for his current support needs.
Ben’s family and I sadly received the news that Temozolomide was no longer effective and that we have used up all standard treatment options, including further surgery and radiotherapy. The next option is to try experimental approaches that are not covered under the Australian Pharmaceutical Benefits Scheme. Avastin® (bevacizumab) was presented as an option that may buy us more time. The cost of accessing Avastin® is at least $20,000.
Ben’s wish is to live at home. To do this safely, we need an adjustable electric bed, pressure care mattresses and a range of mobility equipment, etc. This will cost another $20,000 to enable him to live his life more independently with his loved ones.
To this end, we would like you to help us to raise $40,000 to buy more time and to support him to live at home. This will help offset costs associated with this insidious disease. Ben’s family and I are eternally thankful for all the support received thus far and continue to receive. We are very blessed to have a community of caring relatives and friends across Australia and from around the world holding Ben up with your love. If you cannot donate, thoughts, prayers and support in practical ways are also appreciated. It takes all forms of help to make life easier and less stressful.
To read more about Ben and his journey of living with brain cancer, please check out his blog and Instagram account:
Again, Ben, his family and I say thank you for your amazing support.
- Ben Rae
- Andrew Scott
- Laura Chapman
- Libby and Janet Sutherland
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