This morning, on Sunday 20th February 2022, my son Ben had his last dose of chemotherapy. It feels very strange to type that. 

Ben has had quite a journey. Here is a video of our little superstar: 

https://drive.google.com/file/d/1Iqaxw_UYJRdtti7rEbEBWEbu-safZY--/view?usp=sharing

In May 2020, in the middle of the first covid-19 lockdown, I noticed a small grape-sized lump on Ben’s side. And on 29th July 2020, Ben was diagnosed with alveolar rhabdomyosarcoma (RMS), a rare childhood cancer. He was only 3.

He was thrown into a world of scans, tests and medicines. One of the first operations was to fit a central line. I had never heard of it. It used to take bloods and give medicines. It is essentially two plastic tubes which hang outside the body, enter into the chest and lead into the heart. Ben then started his treatment with 9 sessions of intensive chemotherapy. Each session involved a 2-3 night stay in hospital while Ben was continuously connected, via his central line, to a drip which delivered his chemotherapy. It made Ben feel sick, made his hair fall out, suppressed his appetite, heightened his sense of smell and changed his sense of taste. During this time, Ben had an operation to remove the tumour. A 9cm diameter mass was removed from his side, including surrounding muscle, and Ben will always have a dent in his side. In the run up to Christmas 2020, Ben had daily radiotherapy sessions, 23 in total, with his final session on Christmas Eve. After Ben’s intensive chemotherapy finished in February 2021, he was given a 6 week break and then he started 12 rounds of maintenance chemotherapy. This has involved daily chemotherapy given at home and a fortnightly chemotherapy given through his central line at Great Ormond Street.

It has been hard. But Ben has been an absolute superstar throughout, a real inspiration. He has never once complained about what he’s been through in his little life, even when we’ve had to rush him into hospital in the middle of the night. He has taken everything in his stride, with a cheeky smile. 

So far, Ben has been lucky and I hope with all my heart he will carry on like that. But others we have met and heard about on the journey haven't been. Alice's Arc, a charity set up by the parents of a girl who sadly died because of RMS, helps Ben and others with RMS (and their families). They raise money to research more targeted and less harsh treatments; and to help children and families through their treatments. They've already done wonders to progress RMS treatments, similar to the chemotherapy and radiotherapy that Ben endured, but there’s so much more to do. 

Amy and I are going to run the London Landmarks Half Marathon on 3rd April to try to raise more money for Alice’s Arc.  So many of our friends and family were so generous in helping fundraise for Alice’s Arc, Great Ormond Street and Spread a Smile last year and so there is no pressure at all to give again; but if you were planning to donate a small amount to charity this year then Alice’s Arc would be a great charity to support and we’d really value any contribution, however small.

Wish us luck xx