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.
In October 2015 the intensive cancer treatment planned for Esther, according to the standard protocol used internationally for the type of tumor she had, finally came to an end. After 9 long months in and out of hospitals we were very relieved to see the end of it, although we still had to continue with her maintenance treatment and regular hospital visits. I was concerned because I knew very well that sadly even though far from pleasant and enjoyable, Esther’s cancer treatment was keeping the “monster” out of sight and Esther safe. Obviously she couldn’t have chemo forever and whatever was possible to save her was now done, so we had to keep “dancing in the rain”, taking each day at a time.
On 24th August 2015, just after our holiday in Italy and Alice’s baptism, Esther started Radiotherapy treatment at the Queen Elizabeth Hospital in Birmingham.
After intensive chemotherapy Esther’s tumour in the primary site (her right arm) was almost completely gone, however the protocol for Esther’s high aggressive cancer routinely includes localised treatment in form of surgery and/or radiotherapy. The latest MRI scan showed areas of residual disease in three different spots on Esther’s arm, so the multidisciplinary team at BCH decided against surgery – as this would have been too traumatic for Esther with no additional guarantees of a cure. A series radiotherapy sessions were booked instead, as I explained in one of my previous posts.
On the 11th August 2015 Esther, Alice, Simon-Peter and myself went on holiday to my home town in Northern Italy to visit my family and spend a week at the seaside.
If you are reading this blog and wondering if it is possible to organise a holiday abroad while your child is having cancer treatment, my advice is: just be brave and go for it! Of course it would have been easier for us to stay in the safety of our home, with all the amazing medical support just a phone call or a short drive away, but after almost 7 months of intensive chemotherapy and frequent hospital admissions, we felt that a break from everything was very much needed.
During spring and beginning of summer 2015 we were in and out of hospitals for chemo treatment and doctor’s visits. Esther was doing remarkably well: even-though she was on a very heavy chemo regimen she was well, not having any problems with eating, being sick or poorly. If it hadn’t been for her pretty bold head and stylish hats you would have never guessed she had cancer.
On the 5th March 2015 Esther was admitted at Worcester Royal Hospital with febrile neutrophenia. As the other times this happened, she was fine in herself, but had low neutrophils count in the blood and spiked a temperature above 38C, which meant that we had to stay at the children ward under antibiotic drip, to avoid the risk of developing a life threatening infection. We spent the days colouring, doing art and crafts, watching TV, snacking on hospital food and playing with Nonna (my mum) and Papa’ (daddy).
As I have already explained in my previous post, when Esther was diagnosed with cancer and her treatment plan was put in place by her consultant, I was very much afraid of its effect on my beautiful daughter: I was scared that it would have changed her and hurt her. I guess this is a normal fear for any mother who goes through this same journey: we dread the days ahead because we have little or no control of what it is going to happen – we have to learn to live one day at the time, taking each day as it comes. The journey with my Esther thought me exactly this: that control is an illusion and all we can do is riding the roller-coaster, enjoying the beautiful days and and waiting for the bad days to pass…
Three years ago around this time Esther was diagnosed with a very rare and aggressive form of paediatric cancer. She was 2 years and 9 months old. Up to then Esther had been happy and healthy: she was developing well and she was seldom poorly.
On the evening of the 4th of December 2014 when I picked her up from nursery, she had a painless lump on her forearm that appeared suddenly on that day. I was concerned so I took her to A&E in Worcester where she was promptly visited and given a X Ray. The response was that it was a bruise which would have been completely reabsorbed within 6 weeks. Esther was a little tired but well, she didn’t complain about the visit and she just went along with the radiography.
The worst fear for a bereaved parent is that our precious children are forgotten. We want them to be remembered: we love it when you talk about them, when you go to visit them at the cemetery, when their little friends do something in their memory.. even just saying their name.
16 months ago Esther earned her Angel wings… 16 months is a long time, so I felt it was time to release Esther’s story, to tell the world how brave my precious special girl was during her short life.