Florence’s Rhabdomyosarcoma Journey

Hello there, my name is Sophie. 24 years old and mum to Florence.

I have a little girl called Florence who is 2 and a half years old. She’s recently been diagnosed with a cancerous tumour in her stomach. This tumour in her stomach is still unknown of what it’s attached too. It’s grown a good amount while we’ve been staying in hospital. She’s had MRI, CT chest, Heart, Ultrasound, X-ray scans. A biopsy to get results from the tumour; we had a result back of Rhabdomyosarcoma however, they are still developing and doing more tests to confirm.
There are 4 types of Rhabdomyosarcoma and Florence has the 3rd type known as Spindle Cell. 

Florence has had different antibiotics constantly as she is always spiking temperatures they can’t pin point why she is having these as her bloods and swaps all come back absolutely fine. Now they are putting her temperatures down to the cancerous tumour in her stomach.

We have no idea whether Florence will need further treatment or medication after her chemotherapy and whether this will be on the NHS or not. 

After an amount of chemotherapy, she will be reviewed so re scanned to see if the tumour has shrunk from chemotherapy and to see if the consultants can see what it’s attached to. 

 

She’s now starting to loose her hair on her pillow while she sleeps, this is a big change as I’ve never had her hair trimmed.

 

I’d love to give Florence everything and more she is missing out on as we’ve been in hospital, with her immune being low and our social life changing.

Florence was doing swim lessons, music lessons and was about to start some dance lessons. We was a very active team going on days out, i.e farm trips, the park, theme parks etc.

Florence loved going to her groups and meeting friends and family. She’s always a happy little girl, determined. 

Florence had started going to a play school called Claredon, she loved it there and was always happy to go. I’m hurt to know she won’t be there for a while, while this is going on. Her friends she had made, teachers she had and all the arts, crafts and makings that she would of got to take home. I can imagine it’s the best feeling when your little one runs out with a picture for you.  

With Florence’s Hickman Line we aren’t allowed to go swimming or have a deep bath, she always loves splashing and soaking everyone. I’d love to be able to get her one of the wet suits called Hammond drysuits so we can go in the water. 

We’ve never been on holiday together and this is something I’d love to do with Florence to create memories, experiences and good times.