Update on Sophie Rolf’s last couple of days over at Southampton Hospital from dad Aaron
A helluva day at Southhampton Hospital!! The plan was simple – get the call with Sophie’s MRI results before heading over this afternoon where her chemo would be ready and waiting!
The reality – chase hospital all morning with no luck so go over for chemo only to be told not made and wouldn’t be ready until tomorrow!!
In addition to this they are in the middle of switching their computer analysing system so are unable to give comprehensive results of her scan! However the preliminary findings are that there may be a very slight increase in the size of her tumour. Approx 10% however this is worst case scenario and may be less. For a tumour to be “progressive” and for treatment to stop it has to have increased in size by 25%. So not the greatest news but certainly not the worst!
Sophie’s consultant is still extremely happy with the way she is responding to everything and even called her the “Star Patient” and although we are bias we would have to agree!
On being told we have to go back tomorrow for a third day running Sophie’s response was simply “..ah well Dad, it’s only one more day it doesn’t matter..”
With an attitude like that how can I be anything less than magnanimous?
Thank you from all of us for all your kind words, prayers & positive thoughts…
Sophie Rolf is a beautiful, happy, larger than life little girl who, a few months before her 5th birthday, was diagnosed with an inoperable brain tumour. She has responded to therapy well and most importantly with courage and a smile that has inspired all of those around her.
Unfortunately the prognosis is still poor. What this devastating process has highlighted to Sophie’s family, is the limited healthcare options available for children living or dying from life limiting conditions on the island.
Currently, children from the Isle of Wight travel to Winchester for respite or end of life care, which for Sophie and her family would be a three hour journey each way.
The Sophie Rolf fund, KissyPuppy, is raising money for Earl Mountbatten Hospice to create an interim Island-based solution to support local children and young people with life-limiting conditions.
The Earl Mountbatten Hospice is an independent charity providing comprehensive end-of-life healthcare for the Isle of Wight community. They support and care for adults living with and dying from a life-limiting illness and they are looking at how they can extend these services to children.
The Hospice is working in partnership with Sophie’s parents, and other interested organisations and families on the Island, to research both the need and opportunity to develop its services in the future to include children and young people.
Earl Mountbatten Hospice is committed to improving the range of services and facilities to meet palliative health and social care needs of children and their families and carers on the Isle of Wight in the long term.
The severity of Sophie’s rare condition means that in the interim a place may be needed at the Hospice to support Sophie and her family in her final days. Currently Sophie must travel off the Isle of Wight for much of her treatment, the nearest hospice for children is based in Winchester.
The initial target is to raise £10,000 for Earl Mountbatten Hospice to transform a space into a child friendly residence on the Hospice site, not just for Sophie, but for other children and families who may need this service in the future, would bridge the gap whilst new long term services are being explored.
We appreciate the phenomenal support for Sophie and her family from the Community on the Isle of Wight and the wider support we have received. We would now like to raise funds together with the Earl Mountbatten Hospice, to create an Island based solution that would support children on the Isle of Wight with life limiting conditions and provide end of life care.
Donations would be very much appreciated and we thank you for your continued support.