My son had Retinoblastoma at 12 weeks old. He lost his left eye and had radiotherapy to save his right eye. It worked ... that is until 2018 when he was diagnosed with radiation induced sarcoma. A high grade rare sarcoma. He had 5 cycles of Doxo/Ifos which shrunk tumour and then had surgery to take a margin. All went well.
September 2019, routine scan showed a basal skull recurrence. He underwent 10 hours of neurosurgery. This left him with a hospital infection requiring a further 8 hours surgery. 33 days of radiotherapy and a only a few months later he has been given a terminal diagnosis. Three tumours in his head and a spinal metastasis.
I can’t begin to tell you how utterly heartbroken and devastated we are. I don’t know how long he has to live now and I can’t imagine carrying on without him. How do people cope, what will I do?
Hi Kay2, so sorry to read about your son. It is very difficult for me to even imagine the feelings of losing a child and your poor son has clearly been through so much. I do have a couple of friends who have lost children but in their cases through accidents rather than in this way. Perhaps it might help you though to talk to one of the Macmillan staff who hopefully can give you some support both to make any time you have together as special as it can be but also to help you when he is gone - ring 0800 808 0000 anytime between 8am and 8pm and someone will be there to help you.
<<hugs>>
Steve
