This is me Eabha before my life changed dramatically. I am 15 years old and although 2020 has been difficult for everyone it has been especially hard for me. 2020 is the year my whole world has been turned upside down and I have had to deal with a lot of things many wouldn’t have to deal with in a lifetime.
I currently live with my sister Ciara due to my Mam’s recent passing, she was 51 years old and only 5 weeks earlier on September 10th was given a Grade 3 tumour cancer diagnosis but we didn’t have time to come to terms with this news when 2 days later my Dad suffered a cardiac arrest.
It all began on the 02-07-2020, Mam suffered her first seizure in Bausch & Lomb where she had worked for 23 years. My mother was now an inpatient whilst every test imaginable was put to her.
10-07-2020 Mam was discharged from hospital, no formal diagnosis was provided as we were to be referred to neurology in Cork University Hospital. We were in limbo, the words ‘’ low grade primary brain neoplasm? Astrocytoma’’ The question mark always had me doubting the discharge summary letter. We were assured by teams in both hospitals that in order for an official diagnosis be made further tests and a possible biopsy were to be scheduled. Mam arrived home with a bag of new medication. I created a medication timetable that we could tick off as the day passed. This was our new norm. Dad was terrified of the outcome but he constantly reassured me that everything was going to be ok.
22-07-2020 Mams first meeting with Dr O’Sullivan Neurosurgeon in CUH. Mam was poked and prodded and other possible diagnoses such as inflammatory disease and vasculitis were discussed. To rule out cancer a biopsy was agreed to and we were assured it did not look like a tumour and to disregard UHW previous possibility. We thought this was great news and made our way to Mahon Point for lunch and a quick walk around the shops. Mam picked out a lovely dress for me which we bought but little did I know the first time I was to wear this dress would later be at her funeral.
We received a letter, which noted the dates 11-08-2020 for a pre op assessment and the biopsy would follow on the 20-08- Finally a date for the biopsy a day that could out an end to all of this possible cancer talk. Due to COVID we could not be with Mam on her biopsy date something she would have to face alone. Our minds raced for hours, the procedure took longer than expected, Mam did not come around well after the surgery that she had to be cared for in a high dependency unit for 6 days. Her seizures became more frequent and her medication had to be increased. The biopsy was quite invasive due to where they needed to get a sample. Dad got to visit Mam here and he always stayed positive, his facial expressions told otherwise. 02-09-2020 Mam’s stitches were removed, still no news of the biopsy results. We are told it can take 2 weeks.
10-09-2020 all seemed normal until my sister arrived at school unannounced to take me home. I knew something was wrong and a little part of me did not want to know. We drove for what seemed like hours from Kilmacthomas to Portlaw to find my mother sitting at the kitchen table, head in her hands. Mam had earlier received a phone call from CUH to say it was a grade 3 brain tumour and that we would later be referred onto oncology. That was it, it was cancer the diagnosis we dreaded the most. Our family needed time for this news register but the universe had other ideas. 12-09-2020 started as a normal Saturday for me, one that later ended in chaos. At approximately 10.30pm an ambulance was called for Dad, there was machines and people everywhere. It was like a scene out of a movie. A couple of broken ribs and many rounds of the defibrillator later, Dad had suffered what we later found out to be cardiac arrest. We drove behind the ambulance and were told it did not look good, later that night Dad was put on a life support ventilator. The next few days were a blur.
14-09-2020 Dad was taken off the ventilator and was able to breath by himself. The very same day Mam was taken to hospital. We were having a dinner after Dad’s success of coming off the ventilator. Mam was later admitted, so now I had both parents in hospital at the exact same time. My mind wondered what my life is going to be now.
The following days and weeks turned to mush. Dad’s body had recovered well. No blockages and the brain scans showed clear but there was still a lot of confusion. Some days when I visited him he did not recognise me. This was and still is extremely difficult to comprehend. Mam seemed to be more focused on Dad’s recovery than her own. Her seizures became daily some twice daily, my job was to count back from 40 hoping that they would stop within this time.
06-10-2020 Mam met with oncology, Dr Paul Calvert’s team in UHW. They explained in more detail of the glioma and astrocytoma. Although they said it can’t be removed with surgery Mam can start a course of Chemotherapy and Radiotherapy to help contain the tumour. The key words from today were that the cancer ‘’ was not curable’’. Knowing Mam is getting all this news and Dad cannot understand what is going on makes this a lot more difficult. Usually we would have our chats and he would always assure me that all was going to be ok.
The next week Mam felt off we all put it down to a family meeting with my Dad’s medical team. Mam attended the meeting on the 15-10-2020, a seizure occurred during this meeting but she was insistent that we go ahead and discuss my Dad’s treatment plan. A nursing home was mentioned here to help cater for his current needs.
16-10-2020 my uncle Martin collected me from school again unannounced. I was now passed the point in thinking what next. Could it get any worse? I was told Mam was brought to hospital via ambulance. Mam again had to get more scans. We spoke to her later that night, wished her goodnight and joked about having her home on Monday after her weekend break.
17-10-2020 myself and my sister called the hospital following many missed calls and messages to Mam. We found out that Mam had been admitted to a medical ward and at the time was resting. Later that day myself and my sister were called, Mam was not responsive and the doctor thought we would be able to bring her around with the sound of our voices. When we arrived Mam was lying in the bed but nothing we said could wake her up. We decided to visit Dad whilst we were there and to go back down to Mam in an hour. An hour later there was still no change and we went home. We were at home for only 2 hours when we got a call from the nurse that us and our immediate family were to go to the hospital. It did not sound good. A later scan showed a growth of a new 2cm tumour located on her thalamus which had now ruptured. I pleaded with Mam to wake up but at this stage our only option was palliative care. The days faded into one another visiting both Mam and Dad on separate wards, both not knowing what was going on or what I was going through seeing them both make no improvements. A pain I felt never before. Dad got to say goodbye to Mam but due to his condition was unable to register these current events. Mam passed away peacefully on Wed October 21st at 3.48am. Mam and Dad were childhood sweethearts til the very end.
Now you see why I cannot simply wait for an assessment or bed for my Dad in the National Rehab clinic in Dun Laoighaire. It needs to happen now. Some hospital findings show Dad to be stuck in time and although many a memory remains, he still cannot function by himself and requires 24-7 care with daily tasks such as feeding, and dressing. I become nervous before each visit to my Dad as I do not know what awaits for me when I arrive, does he know me or not today? A security guard assists Dad at all times, his current needs are not being met in hospital and he seems to be a forgotten cause.
We are his only hope in fighting for this. I ask of you if there is anyone that can help us secure an urgent assessment for Dad to see if the NRH is an option, we would forever be in your debt. I am 15 years old and I cannot sit back and see my father of 53 be forgotten about in a Nursing Home. A lovely person once said ‘’ rules can be broken but for good people’’ there is always a way, one in which we need to find. Dad’s treatment plan is to be discussed later this week at a family meeting, no official diagnosis has been communicated but hypoxic brain damage and cognitive impairment have been mentioned. I have lost one parent this month and I am not ready to give up on another and wish to give him every fighting chance. The doctors have said that the National Rehab Centre is our only hope as all tests have come back clear so for Dad to improve on his mind, memory and awareness there are not any other options.
I wish to give my Dad every fighting chance and I am pleading for your help. Eabha Mansfield.
To assist Eabha and her family here is their Go fund me page https://ie.gofundme.com/f/eabhas-hope
Thank you for your help.
