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Florentina Rose Burton

Florentina is a sassy, clever, confident, pony mad little girl, who loves life and enjoys spending time outdoors, dressing up pretty, and riding her ponies.

Her mum and Dad, Amelia and Kevin, met when playing horseball and welcomed Florentina into the world 26th May 2017. Florentina announced to the world back in April she is going to be a big sister soon, and the new baby is due in September 2021.

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Diagnosis

Florentina began to feel unwell at the end of April 2021. It was assumed she had a virus of some sort, and visited her GP. After several weeks, she was still unwell, so on Friday 21st May 2021 she went to A&E.

 

After several tests, we were then told she would be transferred to Great Ormond Street Hospital, London.  After a couple of tough nights, with not a lot of sleep and lots of pain, Florentina was diagnosed with Nueroblastoma on Tuesday 25th May 2021 - the night before her 4th birthday

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Neuroblastoma

Neuroblastoma is a rare type of cancer that mostly affects babies and young children. It develops from specialised nerve cells (neuroblasts) left behind from a baby's development in the womb.

Neuroblastoma most commonly occurs in 1 of the adrenal glands situated above the kidneys, or in the nerve tissue that runs alongside the spinal cord in the neck, chest, tummy or pelvis.

It can spread to other organs, such as the bone marrow, bone, lymph nodes, liver and skin and it affects around 100 children each year in the UK and is most common in children under the age of 5. The cause is unknown. There are very rare cases where children in the same family are affected, but generally neuroblastoma does not run in families.

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Treatment Plan

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Treatment began immediately with Florentina beginning her first round of treatment on Saturday 29th May. She then has had 7 more rounds of chemotherapy on the 8th June, 18th June, 28th June, 8th July, 18th July and 28th July, with 1 more round scheduled for the 7th August.

On the 16th August, Florentina will have her stem cells harvested for use later on in the treatment.

Preparation will then begin for surgery, which will entail approximately 6 hours of surgery, to remove the tumour as well as one of her ovaries. After surgery she will be kept in ICU for up to 1 week.

Following on from the surgery, once her stitches have healed, Florentina will begin back on the high-dose chemotherapy which will last between 6 & 8 weeks, before moving straight onto 3 weeks of radiotherapy (although this is spread over 5 weeks in total)

Immunotherapy & biotherapy then starts, which will last for 7 months. Details of the actual treatment plan will be confirmed after surgery, but it entails teaching your own body to detect the cells which have the same markers in as the tumour which has been removed. And then targeting them and killing them before they have chance to develop.

Once this is all completed, Florentina will be eligible to be part of a clinical trial in New York to receive the Bivalent Vaccine.

Bivalent Vaccine and Clinical Trial

Hopefully Florentina will get the OK to go to the USA for a clinical trial in New York at the Memorial Sloan Kettering hospital. This clinical trial is unavailable in the UK and will cost approx. £250,000 to fund all of her medical bills, plus the costs of flights, ground transportation, accommodation, food & drink plus a special insurance to allow her to travel.

 

The Treatment in New York will consist of 5 trips to the USA. Each trip will last longer than a week, and the vaccines will be spread out over several months and will entail treatment in the hospital.

 

Unlike in the UK, the USA do not have an NHS system, therefor everything needs to be paid for in advance.

* Trip 1 – she will receive 3 vaccines spread across 4-6 weeks

* Trips 2 – 5 – she will receive 1 vaccine per trip

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For up to date news on Florentina's progress,
please check out our blog which will be updated regularly.