Last year, Rob’s story ended with talks of remission. However, since publishing his story, Rob relapsed and found out his acute myeloid leukaemia (AML) diagnosis had become terminal. Despite this, he wanted to continue sharing his story with others to raise awareness of the signs and symptoms of leukaemia, as well as its impact.
Upon learning of his terminal diagnosis, Rob made a bucket list of things he wanted to see, achieve and enjoy before he died. For starters, Rob had an avid interest in castles and would document each castle he would visit on his Instagram dedicated to his ongoing bucket list. From Cornwall to his home town just outside of Bristol, no castle was off the cards!
But this wasn’t all. Rob has been enjoying helicopter rides film premieres and was even an extra in a major TV series being released next year! Another thing to tick off his list – his own living funeral. Rob wanted to celebrate his life with his closest friends and family to properly say goodbye, all whilst having a laugh.
They headed to Cattle Country Farm Park; a farm with plenty of animals and a huge play barn for the rainy days – a great excuse for adults to act like children for just one day! It was somewhere Rob used to go to birthday parties as a child and was a great place for friends and family to bring their children too.
Rob has enriched his last months by spending quality time with friends and family. After the unfortunate passing of his puppy Brian, Bobby the puppy joined the family. Bobby is named after Rob and would live with his parents after he passes in hopes that not only will it help them with grief, but it will be a way for his niece to remember him. Bobby was as much for Rob’s grief as he will be for his parents. Rob’s niece had always known him as Uncle Bobby, so Bobby the dog will always be a reminder for her too.
It was then later decided Rob should try a new chemotherapy drug to help ease his symptoms and potentially prolong his life (although he knew it wouldn’t save him). He first tried vincristine which didn’t work, and then tried nelarabine. This drug is rejected by the NHS, which meant it would have to be bought privately. It cost £15,500 for five days and I managed to raise the total in 10 days through a GoFundMe page.
However, the nelarabine didn’t work and it became apparent that it would be just as likely to kill him as slow things down. The money that was left from the donation page set up would go towards a child on Instagram with AML. Rob is now on an American chemotherapy that was sent on compassionate grounds as it is not given on the NHS. Within a week, it lowered his white blood cell count from 220 to 0.8 and has had an exceptional effect.
Rob is documenting each day on Instagram sharing his story to raise awareness of what it is really like to live and die from leukaemia. He remains honest, dignified and remarkably humorous throughout documenting these final weeks of his life, but most of all, Rob remains selfless even in the face of death.
In a recent post, a follower commented that they wish they had a magic wand to change Rob’s situation. His reply sums him up to a tee, “If you had a magic wand I’d insist you used it on everyone else with leukaemia first.”
This information is correct as of 15/05/23.
For the latest updates, you can follow Rob’s Instagram account @robs_final_dance.
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