Florence P
Florence was diagnosed with Rhabdomyosarcoma on 1st September 2021, however we were at A&E and the doctors on the 19th August 2021.
Her tummy was looking larger than normal and looked as though it had a lump. She had an odd temperature and was going off her food and drink. She isn’t a massive eater anyway, but she usually loves her juice!
As a toddler, you don’t expect her to have a big tummy like a baby.
The doctor sent us home saying Florence was constipated. Very strange as she was going to the toilet. The doctor found it hard to feel Florence’s tummy as she wouldn’t keep still and was getting very upset. They didn’t give us anything apart from saying to ring back in 48 hours. Which I did, and he then suggested going to A&E.
When in A&E Florence had bloods taken, a urine sample and an x-ray which showed a lot of poo. Florence’s bloods came back with an inflamed marker.
We were admitted over night to stay on a ward ready for an ultrasound scan the next morning. The ultrasound showed a ‘lump’ in Florence’s abdomen area.
I immediately thought the C word and we were sent back up to the ward. Later on, they wanted to get an MRI to get some more detailed images of this ‘lump’. Florence was sedated for the MRI scan.
When she was coming out of her MRI a consultant and doctor were waiting to speak to me, they took me into a side room and said this ‘lump’ that Florence has is ‘more than likely cancer’. They immediately wanted a CT scan to check her chest – thankfully her chest scan was all ok.
We were sent home for the weekend but to go straight back to Nottingham on Monday 24th August 2021 where she had her biopsy and a Hickman line put in.
Florence’s biopsy finally came back on the 1st September 2021 as Rhabdomyosarcoma and she began her chemotherapy on the 2nd September 2021.
Florence has had 9 intense rounds of chemotherapy. She also had to have a pre-medicine because she had a reaction to one of the chemotherapies she had. She had an operation on the 25th November 2021 to remove her tumour as the chemotherapy had shrunk the tumour to allow an operation. They managed to get all of the tumour, however not all the margins were clear so Florence had to have 4.5 weeks, 23 sessions of radiotherapy.
The whole time the doctors and nurses had no idea what Florence’s tumour was attached to. Until, they opened her up on the operating table. They believe it originated from the bladder and attached itself to the bowel. The surgeons took the majority of Florence’s bladder away but it will grow and expand as she grows. They couldn’t take much of the bowel as it can lead to a stoma bag.
Florence is currently having 6 months of maintenance chemotherapy. Florence has had and will still continue to have lots of scans, x-rays and check-ups. There are a lot of side effects to all these treatments she has had.
Update 2nd November 2024
Medically, Florence continues to have scans every few months to keep an eye on her and ensuring the cancer isn’t reappearing. She is under a mental health and wellbeing support due to her really struggling with tummy aches, sleep and her eating! I can’t get her to eat much at all – she isn’t even excited for sweets/chocolate/candy, however she does love a pepperoni pizza and this is her favourite dinner to have.
She’s very much loves anything Disney, even the princesses, Barbies and Hello Kitty anything really girlie! she’s also a sucker for some makeup – lipstick, brushes, powders etc – growing up way too quick!
Update 28th February 2024
We had a busy Christmas celebrating with all the family, getting ready for the new year with lots of birthdays coming up. Florence is super excited for hers (15th Feb) she’s also going to Disney at half term weekend which she can’t wait for!! She’s looking forward to spending some euros in the shops – girl after my own heart!!
The end of January was busy with grandma’s birthday and I’m just getting back on my feet from being poorly. It was awful!
Florence is doing really well at school; her reading, sounds and blending of the words she’s reading is just amazing. It’s crazy how their little brains like to soak up and learn new things.
She’s got wonderful manners and is super kind to family and her friends.
She’s loving dancing, singing, dressing up, performing mini shows for us all to watch. I’m thinking about getting into a drama or performing class as I think she’d thrive!
Makeup, nail varnish, jewellery (rings, bracelet, necklaces, clips on earrings) are a go to for Florence especially with a fancy, sparkly dress and her clip, clop heels she has.
Her favourite colour is still standing strong at pink!
Her eating is still very much picky! Refuses to try new things at home but loving hearing she tries and even finishes new foods at school which I can’t get her to touch or even look at, at home.
She’s a lover for pepperoni pizza! Sometimes just eats the pepperoni, sometimes it’s it all together and then sometimes takes it off and just eats the pizza!
Florence’s most recent chest X-ray is clear and we are awaiting her next MRI – I’ve signed the forms for it just got to wait 3-4 months before she can have it done. Fingers crossed everything still continues to go in the right direction for her.
Update 27th October 2022
Florence has finished her oral and IV chemotherapy and we awaiting a GFR test to see how her kidney function is. We are awaiting line removal but, at the moment she still has her line in.
Florence LOVES mermaids, she enjoys pretending to be a mermaid, playing with them in the bath and loves watching Ariel. She also loves to watch Frozen on the telly; making family act out the characters Elsa, Ana, Olaf and Sven. Singing and shouting ‘let it gooo, let it gooo’. Florence enjoys dressing up, holds her dresses and says ‘She’s a princess’ – Walking around, getting down on a knee to give rings to people. Saying ‘you king, I queen’.
Florence loves to help and comfort people when they are poorly or have hurt themselves; she runs to get her doctors kit and begins taking temperatures, giving injections and helping people and animals feel better.
Gabbyshouse is big hit, I’d never even heard of it before. Florence was treated to the dollhouse one day after the hospital as she was super, super brave at having her dressing done – no tears! Florence’s dressing has always been a huge struggle for her; she even had some play therapy to try and help her overcome fears. She’s doing well at sitting still and holding her arm up; sometimes there are little struggles but it’s to be expected with her only being 3 and going through all of this.
Florence is starting back at preschool now; its so scary but exciting at the same time. She goes in really well and comes out with a big smile. Me, Florence’s mummy, have no idea what to do with myself. It’s like I’ve lots my best friend and right arm all in one. I’m thankful she’s back, making friends and bringing me pictures to come home with.