Alexander (or Lex as we always call him) was born on 11 February 2005 and for the first four years of his life he was a happy, healthy child who loved life, playing with friends, football, playing in the snow, lego, our dog Tilly, and his big sister Olivia.
However, in early December 2009 Alexander began feeling ill and suffered really bad stomach pains. I took him to our local doctor’s surgery where he was examined by a doctor, who said she could feel a lump in his stomach so she would speak to the consultants at Sheffield Children’s Hospital regarding a referral.
We went home and took Alexander back to school as he was feeling fine at this point. However, within an hour we received a phone call from the doctor asking us to go to the surgery to collect a letter and take Alexander immediately to Sheffield Children’s Hospital. We were obviously thrown into turmoil and confusion by this as we didn’t know what was happening, but we did as we had been asked and collected Alexander from school and went straight to the hospital.
Here they carried out tests all afternoon and later confirmed any parent’s worst nightmare, that Alexander had a malignant tumour.
Nothing could have prepared us for what was to come and after numerous hospital trips, tests, an investigative operation and a biopsy, on Christmas Eve 2009 Alexander was diagnosed with a rare form of childhood cancer, Neuroblastoma, the most lethal of all children’s cancers.
I just remember feeling desperate as there was nothing I could do and whilst we tried to carry on as normal it was nearly impossible.
Over the next two years Alexander underwent several different kinds of treatment, including chemotherapy and radiotherapy and in December 2011 scans showed there was no noticeable increase in size. For the first time since 2009 the Strong family had little to worry about and had the ‘best Christmas ever’.
In January 2012 Alexander underwent a new form of mild out-patient Chemotherapy as a precautionary measure to help inhibit any new growth. Compared to previous treatments this was a ‘doddle’, and apart from a few trips to Sheffield the Strong household was returning to some sort of normality.
That was until a lump appeared under Alexander’s left armpit at the end of January. At that time, the hospital didn’t seem too concerned and put it down to an infection and administered antibiotics; however the lump continued to grow and became ‘substantial’ and further examinations and a biopsy taken in mid February found that the lump was Neuroblastoma. It was in Alexander’s lymph nodes and had spread into other parts of the upper body via the lymphatic system. It was also in his bone marrow.
This was very bad news as not only had the cancer spread and spread rapidly, but the biopsy determined that it was very aggressive unlike the original tumour in Alexander’s belly that appeared to be static. We were told that unless the disease could be brought under control it was doubtful that further treatment would be successful.
More radiotherapy began which appeared to be quite successful as the lump under his left armpit shrank substantially, followed by high dose chemotherapy. However, in September 2012 we received more bad news, as we were told that Alexander’s cancer had spread to his bones, a thigh, the bottom of his spine and his skull. We were further advised that Alexander’s chance of long term survival was now rather slim.
Hospice is a frightening word
In December 2012 we were told about Bluebell Wood Children’s Hospice by a consultant at Sheffield Children’s Hospital.
We were apprehensive at first and very upset. Hospice is a very frightening word. The reality of looking for somewhere for your child to die when you have battled for so long and always carried hope is heart-breaking. I cried all the time during the visit.
But the reality and fact was that Bluebell Wood could offer us something no one else could, which was the chance to be parents and I could be just a mum again not a nurse/carer.
I knew I didn’t want Alexander to be at home or hospital when he passed away. I wanted our home to still be a happy wonderful place full of children’s laughter and chaos. Also I have seen many parents whose child has passed away on the ward and it’s very impersonal and distressing. However after our initial visit to go and look round we decided that this would be the place where we wanted Alexander to spend his final days.
We spent Christmas at home and visited Bluebell Wood at the end of December, returning on 14 to the 18 January 2013.
Our time here was difficult at first. I wanted to come with Lex. I knew he was deteriorating and he walked through the doors into Bluebell then couldn’t walk any further. The nurse carried him into his room and sat him in a little armchair with wheels and he just sighed and smiled and said that’s better.
It meant we could wheel him around and he could sit and build lego instead of being laid out on the sofa at home and being carried by Mark. He settled straight away interacting with other staff – although he was talking less he still had his beautiful smile and was always perfectly mannered. The animal man came to visit which was fantastic, Lex loved all the animals and took his time touching and holding them all for some time. Boxes of lego arrived as a gift and that made our visit even more wonderful for him.
Sadly on 25 January Alexander passed away peacefully at Bluebell Wood. We arrived on the 24 and settled Lex down with adequate pain relief and a comfortable bed so he wasn’t in any more pain. We spent the day telling him how much we loved him and Tilly our dog sat on my knee and could interact with Lex freely to all our comfort. It was obvious Lex hadn’t got long – we spent the day with close family. The staff were amazing always there not just one but all around in a caring manner for all our needs.
After he had passed away we found it amazing to have use of the end of life suite. Lex was able to stay in here and we were in the connecting room. To be able to spend each day going into visit Lex, talking, putting pictures and cards up and for family and friends to see Lex so peaceful was wonderful.
It was a huge help to Olivia and also Tilly. The privacy to grieve and have visitors but to be away from home and not have everyone calling day and night took a lot of anxiety and pressure off. As a mother I felt like I could just be that, just to give my son the love and cuddles he needed, I will never forget.
Bluebell Wood is a very special place. I know for some of us it’s where you say goodbye to loved ones and for others it’s for respite, but I always feel warmth and love whenever I go back. Special people who do care and want to help take your pain away, and that’s what it means to me.
Alexander battled for over three years and I know he was happy when he was there too. I shall continue to visit and fundraise and always in a positive manner as my inspirational son would want.
Thank you to Maxine and Bluebell Wood for sharing Alexander’s story with us.