I’m having to write what every mother and I would say every person fears.
In July 2020 after going to A&E for an IBS flare up we were told that Henry has a rare, incurable form of cancer called Fibrolamellar Heptocellular Carcinoma which affects less than 20 people per year. He has multiple tumours.
He has endured lots of tests, biopsies, blood transfusions and four cycles of chemotherapy all without complaint with dignity and some humour thrown in. Recently after suffering immense pain he was readmitted to hospital and told that he has blood clots in his femoral artery, spleen and kidney which means he has to have daily injections as well as being on daily pain relief for the damage caused by the cancer and the clots.
He has also been told that unfortunately the chemotherapy has not been successful and his tumours have grown so current treatment has stopped with immediate effect. There is a Plan B of immunotherapy which is being considered but funding is currently being discussed and is not guaranteed. The cost of the treatment is around £10000 but to get him started the initial treatment will be around £2500.
We are trying to raise funds to start the treatment immediately as well as the costs associated with cancer itself. We will need to travel to London and/or Cambridge at least once a week from Norfolk and may have to have overnight stays in order for this to happen as well as visits to our own local hospital weekly. CLIC Sergeant estimate it costs an extra £600 a month for a cancer patient for travelling, food, heating etc.
We are also hoping to pay for another cycle of fertility treatment as the chemotherapy has reduced his chances of having his own family one day which is a further £800 as this is only covered in part by the NHS.
Henry has just turned 17 years old and is one of the nicest and kindest people you could ever meet who always considers others. His plans of volunteering in Morocco with an orphanage did not happen this summer due to Covid so he embarked on learning sign language to help with a deaf group which comes into his place of work regularly (something he has not been able to return to). He’s still working on his A levels at home as it’s too risky for him to attend in person and still hopes to finish his Gold Duke of Edinburgh award when current restrictions and his health permits.
No one should have to go through this fight least of all a young person with their whole life ahead of them. We (Henry, myself and his sister Olivia) appreciate that it is a very difficult time for everyone at present with the uncertainty of the impact of Covid therefore any contribution small or big will help and we as a family cannot thank anyone enough who is able to contribute and have already been supporting us throughout this ordeal.
*update* We have been so overwhelmed with everyone's kindness and generosity that we have adjusted the amount to cover the cost of the treatment. We cannot thank you all enough we are so grateful and will keep everyone update on his journey thank you all again
- Nikki Seaden
- Sophie Makuve
- Genette plunkett