We started palliative care in March 2016. Initially after we had the devastating news that Esther’s tumour started growing again, I wanted to restart treatment, to find another chemo protocol to stop the cancer spreading and have my precious daughter back.
The reality was that because the disease progression happened so shorty after front line treatment and because the tumour was already spread in a large area and inoperable, all the doctors we talked to advised against any more chemo. Esther illness wasn’t curable and more chemo would have meant more time in hospital. She was already poorly and her little body was still recovering from the intensive treatment we just finished a few months ago. We had to do what was best for her.
It wasn’t an easy decision, but my husband and I had no choice and we found ourselves in the hands of the palliative care team, with the intention to keep looking into clinical trials, even though there was no clinical trial suitable for Esther immediately available. I was heartbroken and very scared of the journey ahead. Esther didn’t know the situation as she was still very young and not capable of fully understand what was happening. I was extremely worried and I looked for information about end of life and palliative care, to try to anticipate things, reading books and stories on the web.
We were put in contact with the local children hospice that we visited in a couple of occasions. Esther however was feeling very poorly and didn’t want to go to new places, she just wanted to stay at home with her things and her family, so the children hospice option didn’t work for us. I informed work that I wasn’t going back and they kindly gave me a month full pay and put me on sabbatical leave, so that I could resume my employment eventually if I wanted to. But obviously my focus was on Esther.
We had several visits by our POON nurse, we were contacted by the palliative care specialist nurses at BCH, who soon visited us at home, bringing an emergency medical bag to keep with us at home. The community nurses of the Orchard Team also visited us several times, they were always a call away and everyone was so supportive and helpful. Everyone wanted the best for Esther, I cannot praise enough our palliative care team, they helped us so much and were amazing, so caring, approachable and understanding. I met some wonderful people and I am so grateful they were there to support us.
Esther was prescribed new medications to control the pain, first orally and then via a syringe driver to slowly inject anti-sickness and painkillers. She soon started feeling better and being more herself. We were referred to the radiotherapy team for palliative treatment: Esther left eye was swollen because of the tumour pushing from behind so the MDT decided to irradiate this area and another area at the back of her head, where the tumour was growing, and she was also prescribed steroids. We visited Queen Elizabeth Hospital 5 times over the Easter week for the radiotherapy sessions. Esther didn’t seem to mind going to QE again, as she had a soft spot for the head nurse Helen and her team. We then waited a couple of weeks for the radiotherapy to have its full effect and we took our girls on holiday in Newquay, Cornwall, where we stayed in a beautiful cottage near the beach for a couple of weeks. It was April 2016.
We loved spending time all together in Newquay: the cottages were on Fistral beach, the atmosphere was very calm and relaxing. We didn’t do much apart of going for walks, playing inside with toys, eating ice cream, pasta, mozzarella and chocolate. Esther was rather hungry all the time because of the steroids she was taking and enjoyed very much eating and snacking. Besides the steroids her medications consisted in slow release morphine tablets and antisickness, which she took in the morning and in the evening. Luckily she was put off the syringe driver, which meant we could manage the meds ourselves. The drugs combined with the radiotherapy effects were working nicely and Esther was not in pain: she was calm and peaceful, and it was evident that she enjoyed her time in Newquay, taking pleasure in some activities in particular, like organising her clothes, playing with building blocks, and going to the cafe’ to eat her favourite vanilla ice cream. Nevertheless she wasn’t happy and she wasn’t her normal self, her illness had forever changed her and was slowly taking her away from us.
We had to go to the children hospital in Truro one day to have Esther’s CVC flushed, but everyone was so helpful and kind and did the best to make our visit there quick, causing as little disruption as possible to our holiday, so in an hour we were come and gone. Sadly the disease was still progressing very rapidly and Esther’s heath was still quickly deteriorating: she started to complain of backache and gradually became less mobile. At the end of April after almost two weeks in Newquay we packed our bags and drove back home.
I am grateful that we had and took the opportunity to spent time as a family in Cornwall: it was our last holiday as a family of four and we made precious memories far from hospitals, that I will cherish forever.
To anyone caring for their child or their loved one who has a terminal illness, based on my experience with my Angel Esther, I would advise not to worry too much about what it will happen: worrying won’t change things and you will find the strength inside you to face whatever is put on your way. Your child can sense your worry and needs you to be strong, positive and not different from the person they know. Trust your instinct, you know your child better than anyone else, but also listen to the care professionals and the medical team: although everyone is different, these wonderful doctor and nurses have dealt with similar situations many times before and supporting you is their job. They will listen to you and your child, they will not try to impose or force anything, guiding you the best way they can.