A local child who is battling a rare and aggressive cancer has just a four per cent chance of survival by availing of the treatment for the condition in this country.
Grace Kenneally (9 ) from Tirellan Heights, who has neuroblastoma since she was five years of age, is currently undergoing treatment for the third time at Our Lady’s Hospital in Crumlin. She has relapsed twice.
Her mother, Ethna, a single parent and former payroll manager, believes that availing of a clinical trial in Germany or the United States may be the best option to save her little girl’s life. Available trials for the condition aim to prevent the disease recurring.
Writing on her Facebook page on April 28, her mother, Ethna, says despite extensive treatment in Dublin, Grace is not in remission.
“After speaking with the consultant I just feel so sorry for Grace. I wasn’t surprised with the outcome though and, sadly, Grace is not in remission, despite the mega doses of chemo she was given in February, so strong she had to have her bone marrow rescued with her own stem cells. There was some reduction in the tumours but they still lit upon the MIBG scan meaning there is active neuroblastoma present. These scan results will now be sent to the Royal Marsden Hospital in London to decide the next course of therapy.”
Ethna’s sister Katherine Kenneally says while Grace is not in remission her condition has not worsened.
“Crumlin Hospital has done all it can. We are now waiting on a verdict from a consultant oncologist at the Royal Marsden Hospital. They do targeted radiation treatment there so we are awaiting news on the next step for Grace.
“She was kept in isolation in Crumlin during February and March because she got a stem cell transplant. Her whole bone marrow had been wiped out with the high doses of chemo. After she got out of isolation officially she was being treated for another 100 days as if she was in isolation.”
The Saving Grace Trust has raised €200,000 so far but aims to reach its €250,000 target.
“We are not sure if we have enough raised to fund the clinical trial in the States,” says Grace’s aunt Katherine. “It costs €500,000 for a vaccine there. However there is an 80 per cent chance of being cured if she goes there compared with a four per cent chance here.”
However, first Grace and her family must await news about her next treatment regime from the Royal Marsden Hospital.
It has been an uphill battle for the happy-go-lucky only child who despite extensive treatment has had two relapses and is now at stage four, the worst stage, of this childhood cancer.
“Having been diagnosed at only five years old, she has been suffering for almost half of her life,” says her mum, Ethna. “Yet she always smiles through everything and could really teach the adults around her a thing or two about life. Palliative care was offered at Crumlin already when Grace was given two weeks to live and she has since bounced back.
“She has a recurring tumour in her abdomen, which is attached to the aorta, making surgery extremely difficult. To date, the chemotherapy that has been administered to Grace has helped to shrink the tumour, but it has not addressed her underlying illness. The treatments that are currently available in Ireland, such as chemotherapy, radiation, etc, will not give Grace her best chance of survival. She simply will not live if we do not raise enough money to send her abroad for treatment or an innovative clinical trial.”
The chemotherapy has already taken its toll on her daughter and her extended family are gravely concerned about “how much more Grace’s little body can take”.
“Especially since this is her third time to receive it. We do not want her to have to go through chemotherapy again for a fourth time, if the tumour were to return.”
Grace’s aunt, Katherine, set up a legal trust to raise funds to help Grace receive treatment abroad. She says the support from the Galway public has been outstanding. As part of the fundraising efforts, a gala four course dinner will be held on Friday at 8pm at the Clayton Hotel. Tickets cost €50 and music is by Loveshack. This will be followed by a DJ and late bar. Tickets are available directly from the Clayton Hotel or online at www.savinggrace.ie or by telephoning (085 ) 2773883.
