Patrick has the fight of his life
Patrick Williams had always slept well, until that night in May last year when he couldn’t sleep at all. His parents Julie-Ann and Raymond didn’t know what the problem was.
“Eventually he said, ‘It’s sore. I can’t lie on my side’,” Julie-Ann says. “He showed me this half-tennis-ball-size lump in his groin.”
Patrick was in hospital that night and the next day the family was given the diagnosis. “We had a meeting with the doctor, and he said it is looking like testicular cancer that has spread,” she says.
By the time Patrick was diagnosed he had stage 4 cancer, and Julie-Ann blamed herself for not knowing what was going on. “In those first few weeks it was pretty awful thinking why did I not consider this? Why did I not think of this? It was a good couple of weeks blaming myself and then you just roll on with it.”
She says because Patrick, who has global developmental delay, can shower himself, they had no way of knowing about the lump.
“His tumours spread quickly through his lymphatic system. It was very fast-growing. There was no pain either, there was just a mass,” Julie-Ann says. “It didn’t bother him. He just couldn’t get to sleep.
“Within 10 days he had surgery. They took the right testicle out.”
Patrick, who was then 16, faced three months of chemotherapy and two rounds of surgery between May and October. The October surgery was a seven-hour marathon as surgeons took out lymph glands throughout his abdomen.
Patrick lost a great deal of weight but came through it bravely. Julie-Ann says he will cope with most things if his parents are there with him.
“In February he has risky cardiothoracic surgery. They will collapse one of his lungs and they will take out the tumours around the back of his trachea and take out tumours on the external part of his lungs,” Julie-Ann says.
But the family, from Charing Cross west of Christchurch, asked for a holiday together first. In January they took the break they were determined to have – two weeks at a cabin in Kaiteriteri – along with Patrick’s older sister Sophie, 19, and younger brother Sebastian, 15.
As well as global development delay, Patrick has a condition call pica, where people eat non-food items. “He would eat sand, potting mix, shaving foam and paper, and anything,” Julie-Ann says. But it gave them a lighter moment at the start of their holiday. At the camping ground, Patrick was handed the slip of paper with the wifi password, and by the time they got to the cabin it had been eaten. Patrick, who also has a great sense of humour, was sent back to the desk for another one.
The experience has left Julie-Ann passionate about warning parents with disabled sons to be on the look-out for testicular cancer. But she acknowledges this might be an awkward subject to raise with adolescent boys. “We were shocked when we were informed that lumps can start from the age of 11.
“My husband and I have been impressed with the education that Patrick and his classmates have received over the years around cleanliness, public and private parts and communication with the opposite sex.” However, they did not think the topic of checking for lumps and bumps was discussed. “I am really concerned that all lads are aware of what requires attention in this department. A full explanation of what it is is probably what they need,” she says.
“I want to shout out to anyone with boys or men with a disability to get them checked.”
Caption 1: Time out – Two weeks at a cabin in Kaiteriteri was just what the Williams family needed; (from left) Sebastian, Julie-Ann, Patrick, Raymond and Sophie.
Caption 2: Playing favourites – Patrick’s collection of 28 Thomas & Friends trains and tracks even went on holiday with him to Kaiteriteri. During his weeks having chemotherapy he would research the Toyworld website for his next bravery reward, then on the way home they would go shopping.
This story was published in Strong Voices. The magazine is posted free to all IHC members.
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