CCAM

🎗 The long term side effects. CCAM #ablogaday day14

Even when you have been in remission for a few years you can still struggle with the side effects from the treatment.

After Riley finished all his treatment and was placed into remission in March 2016 he still suffers from side effects because of the treatment.

In May 2016 riley was having dizzy spells and low blood sugar. He was tested for dieabeaties which came back it wasn’t. Riley just needs to eat every 3-4 hours to keep his blood sugar levels up.

Towards the end of 2016 Riley was having a lot of pain with his teeth. We was going to the dental hospital every 6 weeks for a check up. After going backwards and forwards for months and months and months I finally got them to listen. Still in December 2016… They decided Riley needed some teeth out and some fillings. 6 teeth they originally told me he needed out. Well a year past and we was still waiting. Back in September 2017 again they told me he needed teeth out, just 4 though this time! What a relief it had gone down. Well in April 2018 we had an appointment again. Just another check up for the millionth time! They finally listened to me moaning about how long it had taken to get an actual answer from them about what was going to happen with Riley’s teeth. He was in pain, his gums were bleeding when we was brushing his teeth and to be honest we felt like we was just getting messed around.

Riley actually needed a lot of dental work doing, he had cavities, some of his teeth had rotten away because of the high dose chemotherapy. I signed the pink form and agreed for Riley to have dental surgery. 10 teeth Riley had out in the end! His teeth had rotten away. His 4 little top teeth. And 4 teeth at either side. 10 teeth at the age of 5! His beautiful smile changed. His little teeth gone. Worst thing is, the surgeon didn’t take notice of the chemotherapy Riley had had, They tried telling me it was the juice he’d been drinking.

When Riley gets poorly and gets pale his eye where the a tumour was still gets like he has a black eye which is scary and always make me panic because that’s how his cancer started, a little black eye. That’s when I knew something wasn’t right. it always makes me panic, is his cancer back, I it round 2?

Riley also suffers with bad eac infections which most neuroblastoma children do. He has had lots of perforated ear drums that have caused him so much pain, he’s cried himself to sleep a number of times because of the pain! Hes lost out on being at school because of his ears and in May 2018 he had some grommets fitted which are working perfectly for him right now!

Riley also struggles with his mobility, some days are worse then others and some days he is amazing. We use his wheelchair a lot now. He gets tired when he walks. We live less then 5 minutes away from a shop but even that sometimes is too much for him on a bad day. He tries his best to keep up with his little friends. We see the phisco every now and again when were in clinic for a catch up but we take each day at a time!
Riley has taught me so much being his mum. We don’t take things for granted and he has showed me how strong a person can really be when faced with a life changing fight!!!

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