Young woman from Kilkenny diagnosed with terminal cervical cancer and campaigning for access to Pembro drug passes away

News Source: https://www.independent.ie/irish-news/young-woman-26-who-was-campaigning-for-access-to-pembro-drug-dies-from-cervical-cancer-37753395.html

Alice Taylor (26) was diagnosed with stage 3B terminal cancer, which spread to her heart, lungs and liver last May.

The Kilkenny woman passed away surrounded by her parents Martin and Wendy, brothers James and William, her partner David in St Anne’s Ward in St Vincent’s Hospital last Friday. She wanted to be given the chance to have a baby.

From the village of Ballycallan, Alice was more used to caring for others, through her job at SOS Kilkenny, which provides day and residential services for adults with intellectual disability.

Alice's family and friends had been fundraising for the past few months for her to get access to the drug Pembro and more than €100,000 had been donated to an online fundraiser.

Speaking prior to her death Alice said: “It’s hard to explain how you feel when given a terminal diagnosis. I feel many different emotions. I am angry to think I may not be able to do and see a lot of things that I would like to do.

“I’m sad that I may not be around to have our baby brought into the world. I’m worried about my family, Dave (boyfriend) and friends and how they are coping with this situation.

“But at the same time, I am optimistic and feel very lucky to have had such a fantastic upbringing and a wonderful life up to now with such a huge amount.”

Her cancer treatment began following her diagnosis in November 2017 after Alice attended her GP with irregular PV bleeding the month before. She was referred to St Luke’s Hospital, Kilkenny for further investigations and scans including a biopsy. Alice’s biopsy confirmed a 7cm tumour and Stage 2B Cervical Cancer.

Although shaken by the diagnosis, both Alice and David approached it like they do with everything, strong and positive with good humour as they prepared for battle together. All care was transferred immediately to Dublin’s Mater and St Luke’s Hospitals, in Dublin.

The couple first met at Waterford Institute of Technology (WIT) in 2012 when Alice was studying for a degree in Social Care.

Alice explained: “During my first appointment in Dublin, I received the news that I would never conceive or carry my own child. Gone was my lifelong dream of having beautiful little babies and becoming a mother. This news was as bad, if not worse than the diagnosis itself."

The first invasive procedure Alice endured was the removal of a para aorta lymph node in the Mater Hospital. After much discussion with the oncology team, Alice and David were offered fertility treatment at the Rotunda Hospital to create a blastocyst or embryo that would remain cryogenically frozen until a suitable surrogate could be sought.

A blastocyst is an embryo which has been left to develop until day five or six and presents a complex cellular structure formed by approximately 200 cells.

They both grasped the opportunity and following therapy attended the Rotunda for further surgery and egg collection.

“We successfully saved one blastocyst so we have a baby in waiting which is amazing and we are so thankful for. I really want to be here for our baby and see him or her grow up,” added Alice.

The week before Christmas Day in 2017, Alice’s gruelling treatment commenced with 25 sessions of external radiation, three sessions of internal (brachytherapy) radiation and six sessions of cisplatin chemotherapy.

Several sessions a week meant Alice practically moved to Dublin with her devoted parents and David, each taking turns to care for her whilst juggling college and work.

Alice eventually returned home from hospital in February last year. However, devastatingly in May, the results of the post treatment PET and MRI scans, used to highlight trouble areas in the body caused by the disease had the worst possible news. The cancer had not responded to treatment.

The PET scan showed Alice now had Stage 3B Terminal Lymph Node positive Squamous Cell Carcinoma of the cervix with metastases in the liver, lungs and heart.

While awaiting further testing and in order to buy Alice some precious time, she commenced aggressive chemotherapy in July.

Alice, had been hoping to take part in further genetic testing available in New York at the Memorial Sloan Kettering Cancer Centre which was to determine the most appropriate drugs and treatment for her condition.

All funds raised went directly towards her medical treatment. Funds not used will be donated in turn to other charities and the Irish Cancer Society.

Health advocate Vicky Phelan paid tribute to Alice, saying she was "floored" by the news of her death.

"Reading about Alice's death has floored me. I had met her and her Mum, Wendy at St. Vincent's Hospital where Alice moved for treatment to get on Pembro, which she had started. It was obviously too late for her. She was far too young to die," Vicky wrote on Twitter.