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My son hadn’t been ill at all although he had a lump on the side of his neck, we got it checked out just before Christmas 2013 and a referral to see a paediatrician in the New Year was sent.
We enjoyed Christmas even though my son did seem a little quieter he still managed to take part in his passion....stunt scootering. On the day he was due back in school he was tearful, lethargic & just not himself.
I managed to get him in at the doctor’s surgery. She requested bloods for the following morning, results arrived back the following day & we were sent down to the hospital in Halifax for a chest x-ray & to be examined. An appointment for a neck scan the following morning if a senior radiologist was available was planned. After the scan we met the paediatrician, who informed us that he needed to be seen in Leeds as he would need a biopsy on the lump.
We had our first appointment at LGI on 17th Jan meeting the surgeon. The biopsy was carried out the following Friday, all of our hopes were pinned on it being a nasty infection. After receiving a phone call from the surgeon, I knew deep down the news wasn’t going to be good, he told me that it wasn’t an infection & my son needed to have an MRI that Friday.
Friday arrived I went to the appointment in old clothes as I knew I would probably never want to wear them again...!! My son had his MRI as planned.
We then met the doctor who broke the news that our most amazing full of life boy had a rare form of cancer called Nasopharyngeal Carcinoma. I was numb but we heard every word we were told. The treatment was going to be hard but the tumour responds well to treatment, three 21 day cycles of Cisplatin & 5FU, 33 radiotherapy sessions with a small chemo to begin & end followed by immunotherapy for 6 months. Arrangements were then made to operate and insert my son’s porta catheter & feeding tube. We also met the Macmillan nurse who quietly spoke to us all about his diagnosis. We had also told us not to Google but gave us some trusted websites to look at.
Three weeks later chemotherapy began but before this my son needed a bone scan to see if it had spread to his bones, luckily it hadn’t.
Pre-chemotherapy, heart scan, kidney function test, hearing test to monitor and to see the dentist then a final biopsy to determine which of the three types of NPC my son had.
During the first 21 day cycle we spent 7 days in hospital due to my son’s sickness following the chemotherapy. They needed to get the best combination of anti-sickness drugs to suit him & also to see how he reacted to the drugs. We went home with our sick boy, a huge bag of drugs, sick bowls galore. We were ready to fight this enormous battle ahead.
My son needed to be hospitalised on day 15 of the 1st cycle due to an infection in his mouth, IV antibiotics through his port soon did the trick. We as a family were finding our feet & in my opinion we did pretty well.
2nd & 3rd cycles of chemo came & went. Our routine was better. We were even allowed home after the hydration & Cisplatin had been given to my son, the 5FU could be infused whilst he was at home. The pump was then disconnected by a member of the Halifax Community Team who also performed regular blood tests whilst he was at home. I had my sons head shaved just after the 2nd cycle as he didn’t want to watch it fall out & also he could control when it went. We as a family decided early on that we would learn about each part of the treatment as it was happening instead of saturating our brains with too much information at the same time.
Preparations soon began for radiotherapy, we met his radiotherapy Consultant & arrangements were made to see the machine, meet the incredible staff & for Oscar to have his mask made. My son had 33 sessions in the machine, each one getting tougher as he became more unwell. His skin burnt in three places on his neck but miraculously healed before the 33 sessions were done.
Every morning Monday to Friday we travelled from Eckersley House on the grounds of the LGI to St James's hospital & each morning my son listened to the same CD so he would be able to gauge his time in the machine, one of the songs I found quite odd 'Happy' by Pharrell Williams, happy we weren’t but we were just getting on with it. We stayed at Eckersley House which is within excellent distance to the LGI during Radio as he would become too unwell to travel the distance on a daily basis. My son was prescribed a drug called Nabilone which is artificial cannabis, he soon became known as the Space Cadet as he was so relaxed during his radio.
Radiotherapy was tough but he received A1, gold standard treatment & care, 2 weeks into radiotherapy he required morphine which quickly needed to be doubled, the only thing with that was it affected his blood pressure so we had a short weekend break on the children's ward. By June 20th all his nasty treatments were over & he had a couple of weeks break before the immuno started. His bloods were so healthy after the 1St week he could start early, 3 injections weekly for 6 months initially. The immuno (interferon) was kick starting his own immune system, hunting out any nasty cells that might still be lurking.
My son is now almost 2yrs out of treatment, last scan was a good result, he is now having MRIs twice a year & checked regularly at ENT in Huddersfield & by the paediatrician. His treatment was incredible & we will always be grateful to all the people involved on his journey. Life is different & we will never take anything for granted we still have our boy.
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