This and the following post will be very hard for me to write, but I want to record and share with the world the rest of my journey with my precious Angel Esther, because it feels the right thing to do.
The first half of 2016 has been undoubtedly the hardest time of all my life. In January I went back to work part time. Esther was still on maintenance chemo, which was administered weekly at the children clinic at WRH, by her doctor, Dr. B. It felt right for us to go back to some kind of normality, also because my maternity benefit came to an end and two incomes were needed to pay the mortgage and all the bills.
Esther and Alice started to go to Little Squirrels nursery: Esther was happy and proud to go there with her baby sister, she loved taking care of her and checking that she was ok, and Little Squirrels was like a second home for her, with all her little friends and of course Sharon, who took care of her since she was a baby. She had some great days there, happily playing with her friends and keeping busy in all the daily activities and games.
At the end of January Esther started to feel poorly: she didn’t want to go to Little Squirrels anymore, started eating less and being generally a bit “off colour”. This was very unusual for her who was always so radiant and bubbly. I started to take time off work as it felt right not to send her to nursery if she didn’t feel like going, as she had been through so much over the past year. We spent those winter days at home playing, reading books, watching TV, going for walks with baby Alice. It was hard to entertain both, as Esther was fluctuating from fine to not well at all and baby Alice needed to be always kept busy, cuddled, looked after, as she was still less than a year old. In my heart I knew that something was very wrong but there was a very strong flu epidemic around that year. Doctors thought that Esther unsettled health was due to flu combined with months of intensive cancer treatment, which she was still undergoing, although in a much lighter form, with her maintenance chemo.
A couple of weeks later Esther started complaining of pain in her right ear and about a week later she started being sick. …I remember the first time she was sick it was in the car on the way to a day out at Stratford upon Avon… that day we saw beautiful butterflies and I took a beautiful photo of Esther while we were having lunch at a pub, that is the photo now printed on her gravestone. We went several times to see Dr. B. at WRH during those weeks, hoping that he was able to make Esther feel better. An ear infection was suspected and painkillers prescribed, but Esther’s health didn’t improve. She started to loose weight and a couple of days before her 4th birthday she was admitted at WRH following a visit at the day clinic. They did a X-Ray and gave her fluids. We were still hoping that this illness was due to a combination of flue and chemo, although inside I knew that it was something more, that the cancer was progressing, but I didn’t want to admit it as I was aware that if that was the case our options were very limited.
On 28th February Esther had a memorable 4th birthday party at the local church hall in Claines: all her friends came around, we danced and sang with her favourite dance teacher, Jenny from the Jitterbugs crew. We had cake and nibbles, she got many presents, but she wasn’t herself, she wasn’t the happy bubbly girl who always had gorgeous smile on her face. The following day, the 29th February, her real birthday date, Simon, Alice, Esther and myself spent a lovely day together: we went to the park with her new scooter, had lunch in the pub raising our glasses in honour of our “big” girl, visited Little Squirrels and had a birthday cake with her friends… it was a wonderful day that I will remember and cherish forever. We certainly didn’t know that in just over three short months we would have said our final Goodbye to our precious girl… somehow it felt like the quiet before the storm, as if that day was the end of a more serene time together…
The day after, 1st March 2016, Esther was very poorly, she was almost absent, sleeping, not talking much. We went to the children clinic and pretended to have a scan. Dr. B. managed to get her a MRI scan to her head that same afternoon. It was the worst day of my life… everything is a bit of a blur. I remember that she was sleeping on one of the beds at the day clinic, she was given some sedative and brought downstairs for the scan. Simon went with her while I stayed outside with Alice. I was so sad but at the same time I knew I had to stay strong. Esther stayed asleep during the scan and when completed she was brought upstairs where she kept sleeping while we were waiting for the results. After about an hour Dr. B. called us in his office and gave us the devastating news that Esther had a massive tumour in her head: behind her left eye and at the base of her skull. It was inoperable. I remember Simon crying, I was devastated, however it was just a confirmation of something that deep in my soul I already knew. Esther woke up and asked for me, so I did the only thing I could do and I knew how to do: took care of her, hugged her, smiled at her and stayed strong for her.
We had to wait to hear from our consultant, Dr. Dave at BCH, but we had always been told that the front line treatment that Esther finished just a few months ago was not repeatable and if that didn’t work there was not much else that they could do… that palliative care was the only option left.
We were admitted at the children ward. Shortly after, Simon and Alice left, Esther had something to eat, watched her iPad, we talked, and eventually she went to sleep. I cried that night, curling up on my camp bed, thinking that I didn’t want to loose her and that I was willing to do whatever it took to keep her with me.
The day after we went home and the following weeks we had many conversations with doctors, nurses, medical practitioners. Everyone wanted to do what was best for Esther… I remember something that Dr. B. said to me that same evening of the MRI scan: “I believe that parents know what to do”, he said “parents always do the best for their children, I firmly believe that.”
