By Martin Phelan
Special RTI Saturday 18th March
Inspired by a recent diagnosis of Ependymoma of someone very young, near and dear, the Phelan family are raising funds for the Robert Connor Dawes Foundation. Ependymoma is a disease in which malignant cells form in the tissues of the brain and spinal cord. The Robert Connor Dawes foundation are ‘battling brain tumours and supporting brain matters in the areas of research, care and development’. Their mission is all about changing the odds by supporting the science and in the meantime the patients.
I am arranging a special RTI scheduled for Saturday 18th March raising funds to support the Robert Connor Dawes Foundation followed by ‘head shaving’ by anyone willing to do so for the cause. The plan is for the ride to kick-off from Rats at 6am and follow the usual RTI route as far as Sims Rd/Nicoll Highway where we will head for Serangoon Road, Bartley Road and finish at the Australian International School (hopefully by around 11.30am) where the ‘shave’ will occur, coinciding with a sausage sizzle for the Sharks Basketball club and Cockies a few cases of beer have donated product to help the spirit of the day along.
Raffle tickets will be available via Martin and others ahead of the day, as well as at the school and hopefully Dimbulah on the day for regular Saturday riders.
Look out for a dedicated Facebook page for the event which Martin is likely to be sharing over the weekend, please like and share it to spread the word. Martin has also secured sponsorship and a special jersey to commemorate the event, details and orders will also be available via the Facebook page but feel free to PM Martin with an expression of interest ahead of time (incl. size). If there’s interest in a shorter route ride to also finish at AIS for ‘the shave’ feel free to PM Martin or flag interest on the club’s page and if there is sufficient interest he will make sure it’s built into plans for the day.
The background story ….
Before the background, earlier this week the family received the “best possible” news from the lab results – whilst there are never “lifetime guarantees” on cancer, Olivia’s future treatment program is expected to be relatively limited and they are looking forward to being able to return to relative normality in the not too distant future.
Having experienced severe headaches over the holiday season, in early January 2017 our daughter, 15 Year Old Olivia Phelan, underwent a CT scan which identified a ‘large mass’ in her brain.
Around twenty four hours later she went into surgery at the Royal Children’s Hospital in Melbourne to attempt to remove the tumor. Despite the seven hours of painstaking work by the amazing neurosurgical team it wasn’t possible to remove the tumor entirely.
Five days later our family learnt a new word – Ependymoma (a form of cerebral spinal fluid cancer). Our Melbourne based family living in Singapore were fortunate to have been ‘at home’ in Melbourne at the time of Olivia’s diagnosis. The extent of this good fortune became clearer as we learnt that the oncologist treating Olivia was a member of a cutting edge global research team which has been collaborating for around five years.
This global research team aim to better understand and treat the differing types of ependymoma, and Olivia was suitable for treatment under one of the research programs the team has been undertaking to improve outcomes for ependymoma patients.
The first step of this program was for a specimen of Olivia’s tumor to be despatched from Melbourne, Australia to a lab in Germany for further testing.
Four difficult weeks (at least) lay ahead before the test results would be available, with initial chemotherapy treatment to commence in an effort to deal with the remaining tumor.
These results have come in recently, with the news “as good as we could have hoped for” (quoting her oncologist) and are understood to mean Olivia’s future treatment can be less aggressive than might otherwise be felt to be necessary.
This isn’t the end of the story however.
In little more than six weeks, our experience has taken us from complete ignorance of ependymoma to an admiration for the value of the research being undertaken by this team.
Very recently we learned that the funding enabling this research group, and to a very significant extent, the ability to test Olivia’s specimen at the German lab is being made available through the support of a Melbourne based, ependymoma specific charity. The Robert Connor Dawes Foundation. A very clear aim of this work is to enable the development and accreditation of local lab test capabilities.
So, what is the purpose here….
Whilst Olivia was experiencing the further trauma of losing her hair due to the chemo drugs, a professional colleague offered to shave his head if Martin chose to do so, in an effort to raise funds, and in a statement of support for Olivia. A huge thank you to Peter Gilbert at BPL Global for providing the spark to these efforts to draw on the support and generosity of friends, colleagues, new and old, near and far (and those who may be strangers to us, until now) so that we can in some way say thank you and support the continued good work of the Robert Connor Dawes Foundation and the research teams and facilities they are assisting.
Thank you for your support and I look forward to seeing you on March 18th.