In 2010 Henry had had a sore left hand and arm for a couple of weeks. I had taken him to the GP who couldn't find anything. The next day Henry's left eyelid drooped and his left arm went limp. I took him straight to a&e thinking he was having a stroke. They performed a ct scan of his brain and neck and found a tumour in an area of the body called the brachial plexus. There's a huge bundle of nerves here and that is why (very luckily) Henry presented symptoms so quickly.
We were blue lighted to Great Ormond Street and admitted onto the oncology ward. By the time we arrived, Henry was in so much nerve pain that he had stopped using his arm completely and his hand had curled into a tight first. After a week of tests the pathology came back as a malignant rhabdoid tumour. This is one of the rarest (5 cases a year in England) and most lethal childhood cancers. Henry was given a 20% chance of survival.
Over the next 9 months Henry endured incredibly strong chemotherapy, surgery and 6 weeks of radiotherapy. He has had over 50 general anaesthetics, countless blood and platelet transfusions and has fought off lethal infections due to no immune system.
The day of Henry's main surgery to remove the tumour, we didn't know if he was going to make it through. The plan for the incision was to start from the back of the neck, come round to the front and head straight down his torso. The heart would be exposed and a rib removed just to get to the site of the tumour. At this point, another surgeon, a nerve specialist who had been flown in from Scandinavia, was to take over as the tumour was potentially wrapped around so many nerves that the loss of use of Henry's arm or left side of his face was a very real possibility. The surgeon said it could be a 4 hour wait or it could be 24hours if there were complications. After two hours, a strange mobile number called my phone. It was the surgeon and I thought he was calling to say he'd lost Henry. He wasn't. He was calling with the best news possible. He had done an initial incision around the neck to explore what they were dealing with and there was no tumour to be found! The chemotherapy, up to that point, had destroyed the tumour, something which had never happened before with this type of cancer.
Henry went on to complete his course of chemotherapy and radiotherapy and has now been NED for nearly six years.
Chosen Charity for donations:
Cancer Research UK
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