Riley had a Stem Cell Transplant🎗
This was the most difficult part of his treatment plan. Really difficult.
We spent a long 9 weeks in hospital.
Riley had his own Stem Cells Transplanted after 2 weeks of High Dosed Chemotherapy.
You can see from these pictures Riley was in pain and uncomfortable. He did get extremely poorly and was rushed to intensive care twice with septic shock and a number of other infections. He was needing a low percent of oxygen. He had really bad mucositis where he couldn’t eat or drink at all and was having to have water by a sponge onto his lips.
With spending nine weeks in hospital laying in a hospital bed he actually found it difficult to get up and walk again, But little by little he managed to get his muscles working again.
These 9 weeks were the hardest to deal with physically and emotionally. Been in the same room for 9 weeks. We were literally in isolation. It was really hard.
Riley now and still suffers with:
🎗 bowel problems – diarrhoea.
🎗 taste changes – only eats certain foods as his taste buds haven’t fully recovered from treatment.
🎗 hearing loss – really sensitive hearing to loud noises. can’t hear some loud noises at all.
🎗 dental problems – had teeth removed, adult teeth now growing causing him pain.
🎗 can’t control his emotions.
🎗 pain – walking long distances, when tired hurts more.
Some people think once the treatment stopped and your in remission everything stops. It’s wrong. You still have the after effects to deal with. The side effects to deal with. The trauma to deal with. Sometimes it’s after everything has finished that you need people most to understand.
🎗FOUR years ago today my heart was broken, i was told my baby had cancer… stage 4 high risk neuroblastoma.
as a family this was the worst day of our lives. we had all these people trying to tell us information about what was going to happen next & all i could think about was what riley was like only a few weeks before like a ‘normal’ child but the child that was sat on my knee now had cancer & he was so poorly.
riley had 15 months worth of treatment – 7 chemotherapy sessions, 4hours in surgery having his main tumour removed, high dose chemotherapy, stem cell transplant where he spent 9 long weeks in the same room after catching so many infections and also spending time in intensive care, 15 radiotherapy sessions, immunotherapy & antibodies treatment riley was put into remission & has been for over 2 years now.
we have met some of the most amazing people throughout this journey, riley has been cared for by the most amazing Oncology Team – his consultants, doctors, nurses and surgeons who will always have a massive place in my heart!🎗
it is the most amazing thing to see riley going to school now, making friends, laughing & smiling. he amazes me every single day and I couldn’t be any more proud of him!
Riley is and always will be our very own super hero🎗
It’s been 3 years, 10months so scan days are nothing new. Maybe this should be getting easier? Sometimes it does, but sometimes it doesn’t.. it hits me like a tone of bricks crashing down on me again and these are the moments when it’s hard to breathe sometimes.
You know it hits you out the blue, I could be driving to Morrison’s and remember it’s scan day next week, tears well up in my eyes until there’s too many and they drip down my cheeks then there I am sniffling and sobbing, a living breathing bundle of anxiety.
I know I should be trusting my gut because that’s telling me everything will be okay and Riley looks amazing but I’d be lying if I told you I didn’t have these moments where the worries and fears just come running in and it seems so much bigger then I can handle!
Here I am tonight, lying in bed wondering what the mri will say tomorrow! Don’t think I’ll get much sleep tonight.
What if there’s a small tiny tumour?
What if there’s a different cancer?
What if, what if, what if?
Just when I think it’s all quiet and calm in my heart the worse case scenarios would start playing out in my head! The memory or when I was told Riley had cancer is there all the time. There is no off button.
For the past 3 years and 10 months all I’ve wanted to do is take this all away from Riley. But I can’t, all I can do is wait for the results.