by her Mum Marian
We spent a couple of days in hospital and then we got home. We were balancing being parents to two beautiful girls both under 1 years old. Her big sister Caoilainn was only 11 months old so our house was busy with bottles and nappy changes. We thought Tuiren had reflux, so we changed her bottles to Dr Brown. We changed her formula to anti reflux. But still she was getting sick. At her two week check up with our GP I mentioned everything we had done and was advised changing her bottles and formula was good.
A week later on September 21st we were back at the GP as I thought I could hear a little rattle on her lungs. I was afraid that some of the formula she was bringing up was going on her lungs. He prescribed an antibiotic at a very low dose. We were advised that if she couldn’t keep that down that we should go into hospital. Two days later we ended up in Temple Street. There they said Tuiren had bronchiolitis. We were advised to go home and that if we noticed her struggling to breathe, to come back in.
On Friday September 23rd we headed back to Temple Street as Tuiren’s lips turned blue. She was then admitted into St Michaels B Ward. The staff there were amazing. They ran tests to find out why Tuiren was sick. The following Wednesday night going into Thursday morning Tuiren took a turn for the worse. They performed a CT scan where they found a mass on the brain. She was rushed to theatre to relieve the pressure on her brain as there was fluid so a shunt was inserted to drain the fluid. She was then transferred to the ICU for the night and we had to leave her.
On Friday September 30th they performed an MRI to find out more about the mass on her brain. They then explained that she would require surgery and that they would perform a biopsy of cells of the mass and that if it was benign they would try to remove it and if it was malignant they couldn’t do anything about it.
She went down to surgery at 6pm and her consultant was back with us at 7.30pm with the news we were dreading. She was diagnosed with atypical teratoid rhabdoid tumour with spinal metastasis or ATRT for short. A cancer I had never heard of before. The team then explained that her prognosis was not good as there was nothing more they could do for Tuiren.
We had her christened by Temple Street’s Chaplin that night. All our family came in to say goodbye as we were told she might not last the weekend, but little did they know we had a fighter on our hands.
We took prints of Tuiren’s hands and feet, and a photographer came in and took pictures over the next couple of days.
On Monday October 3rd we were going to be moved from the ICU to a ward, we didn’t want that so asked if we could take her home for palliative care. Temple Street’s life-limiting outreach nurse organised with LauraLynn and Jack & Jill to care for Tuiren at home, along with St Francis Hospice. We got all the equipment that was needed to care for her at home.
All the team from Prof Nicholson’s team came to say goodbye and various other staff that had met Tuiren. Then we were transported home with the help of Bumbleance and a nurse from Temple Street on Tuesday October 4th.
We settled in at home with the LauraLynn team during the day and Jack & Jill team at night. This allowed us time at home as a family to make memories. We did various memory making with Tuiren.
Tuiren fought for 4 days at home but at 5.30am on the 8th October 2016 she passed away at just 40 days old in bed snuggled next to Mammy and Daddy.
We are so grateful for everyone involved in getting Tuiren home, as the memories we made I will cherish forever.
Tuiren is loved and missed so much. We talk about her all the time and we visit her resting place everyday. Our family will now be forever incomplete without her but we soldier on everyday for her.