What's the matter princess?

Diarmuid spent 6 nights in the hospice and, while he was there, we (my two boys and my little girl and I) slept in the hospice with him. Just 24 hours before he was moved there from the hospital, we still thought he was coming home and would start chemotherapy a couple of weeks later but instead he was moved to a hospice to die.

My two boys (who were 15 and 17 at the time) knew everything that was going on. But we hadn't told our youngest yet that her Dad had cancer. His prognosis was two years so why would we tell her how serious his illness was at such an early stage? So when we got to the hospice one of the most pressing issues was the fact that Aisling did not know how ill he truly was. Well, the boys and I had only found out that morning that his time was short. To recap:
December 14th: He was diagnosed with liver cancer.
December 21st: We were told it was terminal and it had spread. There would be no surgery. Prognosis was 2 years and he would start chemotherapy on January 20th. "Nothing bad will happen for at least 8 to 10 months. You will live a relatively normal life in that time, play gigs, work, hang out with the family etc. Other than chemotherapy side effects your quality of life will be good." (Words of Diarmuid's oncologist - the head of the Oncology team). 
December 24th: He felt wretched. Spent most of the day in bed except for one hour when he collected me from the village. I was doing some last minute Christmas shopping for the kids. I cried throughout it as I listened to beautiful Christmas music and dreaded the coming months and years. But he drove me home and we laughed and smiled at each other and he felt happy. Truly.
December 25th: He got up at 6am with me and the kids to see if Santa had come! He had to go back to bed by 7.30am and could not get out of bed for the rest of the day.
December 29th: Admitted to hospital. It was emphasised that he merely had a blockage in his bile duct and a stent would see him right. He felt wretched. He asked me to explain to his friends that he was too tired for visitors but looked forward to catching up with them when he got home.
January 5th: Still waiting for stent. A senior radiographer was called in. Told us the tumour was now 8cms in width and he could go into liver failure. This was not "merely a stent procedure". He was bordering on liver failure. He did not have liver cancer. He had cholangiocarcinoma - bile duct cancer.
January 6th: A delicate procedure was carried out to free the bile from his bile duct. It was a success! We celebrated.
January 9th: Oncologist said he would be going home in 48 hours and was back on track for chemotherapy on 20th January. Aisling made welcome home cards and we got the house ready to welcome him home. He was looking forward to catching up with his family and fantastic friends and was very positive and optimistic about the future. Remember he had purposely wanted to rest and wanted to be much more energetic when he caught up with his friends.
January 10th: Hospice team visited. Suggested he come to the hospice for respite. We were shocked. They knew something (in retrospect). We said we'd think about it but pointed out that his oncologist was happy to send him home the next day! They were not so convinced.
January 11th: I got an early morning call from the hospice team. I met them at the hospital. I was told Diarmuid was dying. He would not be coming home. He would not be getting chemotherapy. We were now talking weeks, not years, not months. He was shifted by ambulance to the hospice.

January 12th: I was told we were no longer talking weeks, but days. The staff themselves had rarely seen such a steady decline. It was shocking. Bile duct cancer is very rare. It's a monster. Everything had to be fast-tracked. While they would normally break the news of cancer to young children over a period of weeks, Aisling would need to be told urgently. A meeting was set up for the next day, the 13th.

January 13th:

A team consisting of a counsellor, two doctors, a nurse, a chaplain, myself, my sons and my brother sat in a room to explain to Aisling what was happening. In retrospect this was the perfect combination of people. My children because, tragically, they needed to know the truth. The counsellor because she gets it. The medical experts to answer the questions and, sadly, transmit that this is science, it's about cancer cells, not some imaginary or half-arsed 'syndrome' but a real medical disease killing a real physical body. My brother because we are very close and he gets it too. He cares about me and the children, he's not hysterical or dramatic. He's there because he cares.

The head doctor and the counsellor asked her to describe what had happened to her Dad. She told them how he wasn't feeling well and how he had seen a doctor and was vomiting and sore. They listened and validated every word. Then they told her about cancer - how there are bad cancer cells and that even though it's often fixable, Diarmuid's particular type of cancer was very bad. They said (in such a kind and loving way) that they had done all they could but, at this point, there was no more could be done except to ease his pain.

Aisling just stared from them to me, to her brothers, to her uncle. She was mute. I could see the realisation slowly dawning. Her little face was full of desperation - she so badly wanted someone to say "BUT..." as in "but of course he'll be okay" or "but he'll go home soon"...... There was total silence in the room. Then she looked at me for an answer. I caught her hand closest to me and put my arm around her and I said "I think my love that even though the doctors have tried everything and even though Daddy got the best medicine there is, I think..... well I think this means that Daddy is going to heaven". She went white and her little innocent little face went to pieces and the tears poured out of her. Everybody cried. The nurse, doctors, counsellor, me, my brother, my sons, Aisling. The tears flowed freely. Everyone hugged her in turn including her big brothers. She urgently wanted to leave the room. She said: "We must tell my Nanas, we must tell everyone, they should know Mom". That's her. Caring about others all the time.

Across the hall there was a Day Room where my family and friends waited and chatted that whole week, taking turns to support us and to visit Diarmuid. At that moment Aisling ran into the Day Room with tears pouring down her face - she threw herself into the arms of her auntie and her grandmothers and said "my Daddy's going to heaven, my Daddy has to go to heaven" and then she sobbed and sobbed and we tried to catch her before she ran but she ran down the corridor to her Dad's room shouting "I have to see Daddy". Then she threw her arms around him and cried her heart out. Diarmuid gave her a big smile and said "hey, what's the matter princess?". She looked at me and looked back at him and instinctively knew that he didn't know he was dying. She didn't mention heaven. She just said "Daddy you have cancer". He said "yes but I'm fighting it princess". Remember he didn't know he was dying. We had only just found out ourselves how soon he could be gone. He still thought that chemotherapy would be happening. She hugged him tightly and let the tears flow. He looked at her and looked at me and I think in that moment he knew he didn't have long.

January 17th: Diarmuid passed away with our son Emmet holding his right hand and our son, Daniel, holding his left hand. Within minutes of his passing Aisling came into the room (she had been out for a walk with her auntie, Diarmuid's sister) and I knelt down and told her "Daddy has gone to heaven my love". She cried and held him and, along with her brothers, myself, our family, our closest friends, we stayed with him all day, saying our goodbyes.

She sleeps in my bed and I look at her sweet innocent face as she sleeps and I'll tell you something - there's no pain worse than the pain of watching your children's hearts break. My boys too. My handsome wonderful boys. Sobbing over their Dad's body as he passed from this world. It was just so awful. It IS just so awful. This pain... the agony of watching your children yearn for their beloved Dad... it's indescribable.