My son Henry was diagnosed with Acute Lymphoblastic Leukaemia (ALL) on January 9th 2016 when he had just turned 7. Within 48 hours his whole life had been turned upside down and an ambulance ride to Addenbrookes confirmed his diagnosis with intensive chemotherapy treatment starting immediately. The first 6 months of treatment threw relentless physical and psychological challenges at Henry with hideous side effects from chemo and steroids which caused a lot of pain, weight gain, anger and restricted mobility. 3 years of ‘maintenance’ treatment for boys with ALL means 3 years of daily chemo, weekly antibiotics and blood tests, monthly check ups, 3 monthly chemo under anaesthetic and emergency stays in hospital if Hen’s temperature went over 38c, for this reason Henry had to be within 90 minutes drive of a UK hospital at any time for the duration of the 3 years to avoid sepsis and complications during treatment. Incredibly, and thankfully, Henry got through his treatment which ended in March 2019, he is officially in ‘remission’ and March 2024 will be ‘cured’. In 2018 whilst still on treatment we organised a fundraising exhibition of donated postcard sized artworks from artists for Children with Cancer UK and for a trip at the end of treatment for Henry. See the artworks donated and find out more at www.sarahcannell.com/henrys-odyssey
Wading through PTSD
This has been our life for such a long time it is normal for our family. What we didn’t see coming at the end of treatment was the massive psychological impact for all of us, particularly Henry, from taking multiple traumas in our stride. We were warned by hospital staff (doctors, nurses and psychologists) that people can have a ‘bit of a wobble’ at the end of treatment. For Henry this has meant severe separation anxiety and PTSD which has impacted his daily life in many ways including terrible nightmares, disturbed sleep, panic attacks, high anxiety and sickness phobia. Accessing help through school and NHS mental health provision has been gruelling and limited in it’s helpfulness. Whilst his school have tried to help with extremely limited resources we have found overall psychological help has not been there in the way we have needed it. We have had to find our own way through an extremely difficult time and whilst we are still struggling we try to be positive and find creative solutions from wild swimming, hypnotherapy, reflexology, clay therapy, art therapy and many more approaches.
The Healing Power of The Arts
Throughout everything, I have felt the strength and healing power of the arts in so many facets of our #creativeodyssey from the artwork hanging on the walls at Addenbrookes and Norfolk & Norwich hospitals, to the incredible response to #henrysodyssey in 2018 from local and international artists, to the simple act of stitching, drawing and making at home and in hospital rooms with Henry and his friends over the past few years. I truly believe that #artwillsaveus in so many aspects of our lives, particularly when it involves wider communities, and this is part of the reason for planning the Winter Light Festival at Raveningham for March 2020. We need something to work towards and to look forward to which will spread a bit of light and magic, a focus away from the challenges of PTSD with the idea that using simple materials and making art together, celebrating art and nature will benefit everyone’s mental health regardless of what challenges life has thrown at them.