New Year’s Day 2013, Shirley Read, was told the devasting news no parent ever wants to hear, that her 13-year-old son, Alex, had osteosarcoma. Alex’s treatment involved chemotherapy and an amputation of his right arm and shoulder. Alex spent time watching YouTube videos on how to perform tasks one-handed. A passion of Alex’s was to sing and play guitar, he was so determined to continue playing that he taught himself to play one-handed.
Alexander George Read (Alex) was born on 11th May 1999, our second child and only son, a much longed for baby brother for Eleanor. He was adorable from day one, with his big blue eyes and cheeky smile. People always commented on his smile; at his first school parents evening we were told that “He just smiles all day long.” Alex loved life and was full of fun and mischief.
He also had a very caring nature, always thoughtful and thinking of others. He loved to play his guitar and had a beautiful singing voice. He was a big fan of the Foo Fighters and You, Me at Six. He was a Doctor Who fanatic, loved 8 Out of 10 Cats Does Countdown, The Big Bang Theory and any TV programme that made him laugh. His sense of humour was just fantastic. He adored chicken korma, After Eights, homemade shepherd’s pie, Twix’s and milk. He was obsessed with monkeys and border collies and had a huge cuddly toy collection of both.
At the beginning of December 2012, Alex fell on his shoulder while playing football. He said it hurt a bit but didn’t want any fuss. A week later it was still hurting so we went to the GP who told us it was a muscular problem and to take Ibuprofen. We ended up going to the GP three times, each time being told the same and being given antibiotics. They agreed to refer him for an ultrasound scan at our local hospital. On 31st December, we rang to find out when the scan would be because by this time Alex was in constant pain. The scan wouldn’t be until the end of January because it had been marked non-urgent. On 1st January 2013, we decided to take Alex to A&E at Queens Medical Centre. He had an x-ray which showed a ‘growth.’
We were told that it was a form of bone cancer, osteosarcoma. He would need nine months of treatment, including chemotherapy and surgery to replace the bone.
After a biopsy at The Royal Orthopaedic Hospital in Birmingham, Alex had his first Hickman line fitted on January 17th and started the first cycle of chemotherapy at QMC. This obviously made him very sick; he lost lots of weight and all his hair. A CT chest scan also showed three 2mm spots on his lungs. We were told these would be ‘mopped up’ by the chemo.
After three months of intensive chemotherapy an MRI showed that the tumour had not responded. We went to see the surgeon in Birmingham who told us the only way to save Alex’s life would be to amputate his right arm and shoulder.
Obviously, we were all devastated but Alex was so desperate to live he agreed, and spent the next day watching YouTube videos on how to perform various tasks one-handed.
We had five days to get used to the idea and returned to Birmingham for the surgery on April 17th. At the time we thought that taking him down to theatre to have this horrendous surgery would be the worst thing we would ever have to do.
After his surgery Alex recovered well, amazing doctors, nurses, physiotherapists, teachers, friends, family and everyone who came into contact with him. He adapted quickly, just wanting to be as ‘normal’ as possible and get on with his life. He went to school as often as he could, just wanting to be like everyone else. We felt like we were trying to keep up with him; it was he who kept us going, never complaining, just smiling and being happy to be alive.
Alex after his amputation, playing Banjo Bill with just his left hand.
Alex continued to have chemotherapy and needed a new Hickman line because the other one had been caught during surgery and started to leak. We thought our awful journey was getting nearer to the end but then, in July, after contracting a fungal infection in his lungs, scans showed that the tumours on his lungs were growing. Alex started a new chemotherapy, which initially did begin to make the tumours shrink. However, they then became unresponsive and by November they had grown again. In December, Ecoli was discovered in his Hickman line and Alex was very poorly. The line had to be removed and Alex opted to have a port fitted instead.
Thankfully, Alex was able to come home for Christmas and felt quite well. We tried to make it as normal and happy as possible, but all the time trying not to think that this could be his last one.
In January 2014, Alex became quite unwell again due to fluid around his lungs, the cancer had also spread to the pleura. He continued to be in pain and have a high temperature.
On 29th January, we were given the devastating news that nothing more could be done for him.
He had a pleurX chest drain fitted to try and prolong his life and make him more comfortable. We emptied this every day at home and during our many visits to day-care. On 1st March, Alex started to need oxygen 24 hours a day and was taken into hospital again with severe pain. A CT scan on 2nd March showed that the left side of his chest cavity was completely full of cancerous tumours and the right side was growing rapidly.
Alex came home by ambulance with a 'Do Not Resuscitate' in place. From 10th March, he became more and more distressed and confused, and so pain relief was increased. He lost his fight on the morning of Thursday 13th March 2014.
Alex amazed everyone with his strength and will power. He never complained, and never asked “Why me?” He even taught himself to play his guitar one-handed. He was nominated for an award from the Wellchild Charity and won the most inspirational young person in his age category. His award was presented by Pixie Lott and Oliver Phelps at a ceremony at the Dorchester Hotel, 11th September 2013. We even met Prince Harry, who told Alex he liked his hat! Winning the award made us very proud but actually just showed everyone else what we already knew.
Alex was special. We are so proud of him for being the thoughtful, loving, caring boy he was. He was the one who made us laugh, brought us joy, love and most of all, we loved his cuddles. He was so easy to love.
We miss Alex more than we thought was possible and would give anything to have him back. We all miss his mischievous sense of humour, his fascination with the weird and wonderful (pet stick insects!), his Jimmy Carr impression, but above all his warm, loving hugs and his passion for life.
Party in heaven, Alex, our beautiful boy.