⭐️Our journey so far:⭐️

In March we noticed that Flora wasn’t quite herself. She was irritable, waking in the night and had an upset tummy and swollen lymph-nodes. We took her to the GP three times over the course of the month only to be told she had a viral infection. By the end of March Flora had deteriorated and was admitted to hospital. She was pale, lethargic and we’d noticed bruising around her eyes. Blood tests showed that Flora was Anaemic and further investigations were conducted to determine why. It was an antagonising wait.

At the beginning of April our beautiful girl was diagnosed with Stage 4 High Risk Neuroblastoma. Our hearts shattered, and our battle with this nasty disease began.

Neuroblastoma is a rare aggressive form of cancer, affecting around 100 children in the UK each year, and has the second highest mortality rate in children second only to Leukaemia. Despite the gruelling treatment regime (12-18 months), the statistics show that roughly 50% of Neuroblastoma children risk relapsing within 2 years of achieving remission. Unfortunately, there is currently no cure for relapse Neuroblastoma and the survival rate for relapsed patients is as low as 10%. However, there are clinical trials taking place out-with standard NHS treatment that give hope to the families met with this devastating diagnosis.

Stage 4 Neuroblastoma requires at least 12 months of intense, invasive and very painful treatment. This involves a gruelling 3 month chemotherapy plan with chemo every 10 days. Which means that Flora has very little time for recovery between sessions, resulting in increasing risk, suffering and complications.

Flora will then undergo surgery to remove the tumour in her abdomen, followed by 3-4 weeks of high intensity chemo (where Flora will remain in hospital permanently due to poor health and risk of infection). This will be followed by radiotherapy, bone marrow/stem cell replacement and immunotherapy treatment.

As well as treatment for the disease, Flora will undergo constant tests and procedures including lumber and bone tests, biopsies, central line surgery and replacements, daily injections, medication and the relentless suffering and side effects that treatment brings. The aggressive nature of this treatment means that many children suffer with serious long term side effects including loss of hearing, heart disease, lung disease, mobility and loss of hand motor functions.

Even on the darkest and hardest of days, Flora lights up the room with her infectious smile. Flora is the cheekiest two year old on the ward and enjoys running around the corridors making lots of noise! She is the Mayor of mischief and keeps everyone on their toes! She loves playing at the beach, splashing in the sea, playing at the park, and building puzzles. She brings so much happiness and love to our family and we are so blessed to have this special girl in our lives.

We appreciate all the love and support our family has received over the past month and kindly ask for your continued support and prayers whilst Flora embarks on this journey.❤️❤️

#neuroblastoma #neuroblastomaawareness #neuroblastomawarrior #cancer #childhoodcancer #childhoodcancerawareness #childhoodcancerwarrior

Millie Luby