We were told Raeyah’s tumour had the more aggressive cells and was a high risk, non favourable Wilms tumour but most children, around 93% go on to live a full happy healthy life….for us this wasn’t going to be the case!
Our daughter had been suffering from random sickness, at the time we thought it was due to her drinking milk before bed then juice during the night and it was causing her to vomit randomly. I went to work one morning and she stayed at home with her dad as she’d been sick the morning before. Later that day my partner rang me to say he had called an ambulance due to colour of her vomit but work wouldn’t allow me to leave straight away and I eventually left at 530pm by, which time she was already at Hospital. She was fine in herself playing, eating nothing out of the ordinary but they wanted to scan her as they had felt a bump on the left side of her abdomen but weren’t sure if she was constipated so wanted to check.
We were called back the next day for a scan and at 5.30 that evening in December we were told our happy little girl had a tumour on her left kidney!
We were in complete shock and I couldn’t believe we were having a conversation about what would happen next. We were sent home and told to return the next day where they would carry out more scans, tests and fit her central line.
When we returned she had a temperature, which had developed over night and she wasn’t happy. They needed to fit a cannula which we had to hold her still for, she screamed and cried and it was at that point reality hit us and everything seemed to fall apart.
Raeyah spent that Christmas in hospital and began six weeks of chemotherapy. On the 2nd February the day before her brothers 9th birthday she had an operation to remove her left kidney and a 5mm mass on her left lung, she remained in hospital for a week, but they expected her to stay longer, the operation was a success and she recovered well.
We were told her tumour had the more aggressive cells and was a high risk, non favourable Wilms tumour but most children, around 93% go on to live a full happy healthy life….for us this wasn’t going to be the case!
Our daughter had intense chemotherapy every three weeks, she put on weight, ate normally as long as she had her anti sickness, grew, played and would laugh smile and surprised a lot of us with how well she managed.
She was placed in remission December 2022 and her line removed a few days before Christmas.
The day after Christmas she started to limp, we called the Hopsital and were told it was growing pains. Three time we were told growing pains until our regular nurse who was fantastic pushed for her to be seen. She was given an x-Ray we were informed it all looked ok but she had something showing on the right hip bone, it later transpired her cancer had returned but was now in her bones, all of this a few days before our sons 10th birthday.
Less than 5% of children with a Wilms tumour relapse to the bone, but typically for us we fell into this small percentage and again everything fell apart.
There was nothing else the hospital could do, they were just as surprised as we were that it had come back so quickly and where it had.
Our beautiful girl passed away 8 weeks later, the day after her palliative chemotherapy. Her brothers never got to say goodbye, all they knew was their sister was going into Hopsital to have a new line fitted and chemotherapy for a week and that she would be home each day before returning for another round. We thought we would have time to do things and make memory’s but we didn’t have any time at all. We raised money to try to get treatment over seas but it was all too late and we had to say goodbye to our bright, comical 4 year old little girl sooner than we ever imagined.
In her memory using the money people had donated we set up a charity for Raeyah, it also gives us the opportunity to talk about her and help others who may be in the same situation as us. It’s given us focus and helps us feel connected to her, we want her to know she will always be our little girl.
https://www.instagram.com/raeyahs_hands_of_support/
