So today is the last day of September.
The last day this year of Childhood Cancer Awareness Month and GO GOLD for September!
It isn’t the last day for the families of children with cancer. Our fight continues.
The families that worry every day during treatments, hoping for the best outcome. The families that are living with the heartbreak of losing their child to cancer.
GP’s needs to become aware of the symptoms so they can be picked up quicker! Parents need to recognise and educate themselves on the symptoms of Childhood Cancer!
This is where it becomes personal.
Before Riley was diagnosed, he walked into our baby gate about two weeks before and had a small back eye. A week later this black eye was still there. I had taken Riley to the doctors. Due to him getting this small lump on his eye. I was told it was a ‘cyst‘. The following Sunday Riley was crying, in a lot of pain, sleeping a lot, not eating and looked to have lost weight! Me and my mum took him to our medical centre were again we was told it was a cyst.
About a week after I took Riley to be weighed. His weight was fine but the health visitor told me to take him back to our medical centre before Riley had started with nose bleeds. They refused to see him and told me to take him to A&E!
Me and my mum took Riley to A&E where again we were told it was a cyst and worst case would be surgery to remove this cyst. Riley spend 3 days in hospital on a drip – antibiotics. When we were discharged we had a eye appointment booked for the following day. Makes me think now, did they actually know and didn’t want to tell me? Or was this something that they were just doing?
The following day. Thursday 27 November Riley was in such a good mode, he was smiling and laughing, we went for the eye appointment were the doctor did all the checks on Riley’s eyes. The doctor didn’t look happy, he wanted Riley to go for a CT scan at the hospital. So off we went. I didn’t think anything was wrong at the time!
Later that evening Riley had to CT scan, he was put to sleep for the very first time which was absolutely heartbreaking for me and thank goodness my mum was there because I honestly don’t know what I would have done. This wasn’t something I thought would ever happen… Me and mum sat outside the CT room. It was awful. One of the doctors came out after about 10-15 minutes and got straight on the phone to somebody. He looked shocked! I think my mum probably knew something wasn’t right then. She didn’t say anything to me because she didn’t want to upset me.
That night I laid in the hospital bed watching Riley sleep. I did the worse thing you could do and I went onto google! ‘Small lump on toddlers eye’ ‘lump on toddlers eye‘. It did come up with cyst but it came up with cancer! I put my phone down and thought cancer? He won’t have cancer he’s only a baby.
The next day came and Riley was having a little drink of juice. The nurse came and said the doctor would be coming to see me soon. The doctor came and we went into a room. Why’s he taking me into a room? Why couldn’t he just tell me? Sat down with Riley on my knee. The doctor sat down in front of me ‘we’ve found a lump on the CT scan’. What I was told was a cyst was actually a tumour! It was cancer!
Is he going to die I said? The doctor didn’t answer. My mum came into the room and I told her. We were shocked, we were upset, our world had just been crashed down in front of our eyes.
Before I knew we was been sent for X-rays, ultrasounds etc, then we was meeting an oncology children’s nurse, oncologists, surgeries, doctors, I was signing consent forms for Riley to have a Hickman line fitted and the tumour on his eye removed!
Stage 4 high risk Neuroblastoma Riley was diagnosed with. He had a big tumour in his adrenal gland, it had spread to his bone marrow, he had a small tumour at the side of his head. He had 40% chance of survival. Nobody could tell me if the treatment would work, nobody could tell me if he would die.
Riley started chemotherapy on the 4th of December. After 3 cycles of chemotherapy Riley had different tests and scans to see if the cancer had gotten smaller. Unfortunately the cancer hadn’t gotten any smaller which wasn’t good news! So continued with the chemotherapy we did.
After the full 7 cycles of chemotherapy Riley had the tests and scans again! This was the worst waiting game ever. Amazingly Riley’s tests results were good! The chemotherapy had worked and the cancer was smaller! Riley could have surgery. The surgery that could actually save his life.
On the 8th of March 2015 Riley had the surgery. 5 hours he was in theatre and the tumour was removed. As well as one of his adrenal glands.
In April Riley had his Stem Cell transplant which made him extremely poorly. He spent 5 days in intensive care with sepsis. We spent a long emotional 9 weeks in hospital during this treatment.
June Riley started radiotherapy which was by far the easiest to deal with.
After that Riley started his last treatments, immunotherapy and antibodies treatment. This went on for a long 6 months!!!
After the treatment finished, Riley had all his tests and scans again which was massively emotionally draining for all the family.
March 2016 we was told the most amazing news ever! Riley was in remission! All his tests and scans were clear! My boy had done it! He was clear, no sign of cancer! I was so proud! I was so happy and you know I actually thought I was restarting my life with a 3 year old!
This is where the awareness has to start.
You get told to check you breasts, check your prostate, check you testicles!
With childhood cancers why do we not check symptoms?…
We have an amazing NHS!! Without it, we would have medical bills in the hundreds of thousands for Riley’s treatment! The nursing teams we have are wonderful!
As parents of a children fighting Childhood Cancer all we ask is for more awareness of early symptoms, better funding into research into treatment more suited to children, rather than one fits all!