We have to update some incredibly sad news about Rosie. Her disease has progressed too far and there’s nothing more that doctors can do for her.
Thank you to everyone who has supported Rosie’s campaign with us, it was amazing to see so many rallying behind this amazing little girl.
At the request of her family, we will be closing donations Rosie’s appeal.
Her family posted on Facebook: “It hurts so much to write this but there is nothing more the doctors can do for Rosie so while we continue hope for a miracle we are taking her home and doing palliative care. She has fought so hard but the “bad guys” just got too much. Please keep her in your prayers both for a miracle and to have some time time at home happy and pain free xxx Thank you so much for your support with the fundraising – we so hoped to get the treatment we thought would give her a chance but it wasn’t to be – we will be in touch with plans and next steps for monies raised but are closing Solving Kids Cancer campaign from today. Love and thanks always.”
Seven-year-old Rosie is a chatty, cheeky princess – everyone who meets her immediately falls in love with her, and she also takes no nonsense, in the nicest possible way!
At the age of just 15 months, she was diagnosed with high-risk neuroblastoma when a tumour was discovered below her eye. She fought hard through 18 months of treatment which helped her recover and – despite lasting side-effects of hearing loss – for the next two and a half years she was able to enjoy life cancer-free with her friends and family.
But since then the disease has twice returned in Rosie’s bones, most recently in April 2018. In around 40-50% of children like Rosie the cancer comes back, and of those children, less than 1 in 10 will survive.
Rosie’s family began fundraising in case they needed to access further treatment or clinical trials not available through the NHS and with doctors concerned whether she could tolerate any more chemotherapy, they decided together that Rosie’s best option was to access immunotherapy (hu3f8) in Barcelona – potentially life-saving treatment which needed to begin immediately.
But unfortunately, Rosie’s disease has since progressed and she is receiving palliative care.
Rosie has a large and loving family, with mum Donna-Louise, dad Ross, and eight-year-old twin brothers Lucas and Dylan – plus a whole extended family of granny, aunties, uncles, and cousins and close friends.
“Rosie looked like a little doll when she was born, hence her name, after the doll in the TV programme – Everything’s Rosie. It was hard at first having three kids under two but felt complete as a family. Rosie just fitted right in, always happy and content,” says Donna-Louise.
Just before Christmas when Rosie was 14 months old she got an ear infection which seemed to clear up with an antibiotic. But soon after her parents noticed a problem with her eye – after a few doctors’ visits then a trip to the local hospital scan results showed a mass in Rosie’s face.
Donna-Louise adds: “The minute we heard the word “mass” it felt like our whole world fell apart.”
Diagnosed with high-risk neuroblastoma
After many further tests and scans, Rosie was diagnosed with Stage 4 high-risk neuroblastoma and her parents were told that the cancer had spread to her abdomen, facial (skull area), lymph nodes, bones, and bone marrow. Treatment started immediately and for the next 15 months included chemotherapy, surgery to remove the primary tumour in her abdomen, high dose chemotherapy with stem cell transplant, radiotherapy and immunotherapy.
Despite suffering liver disease and a brain haemorrhage, and being left with high-frequency hearing loss as an after effect of treatment, Rosie fought on, recovered well and for the next two-and-a-half years was able to enjoy life again.
But in November 2016 a routine scan showed that Rosie’s cancer had returned in her bones and bone marrow, despite her showing no symptoms. At this point, she was put on the Beacon trial and received 12 courses of chemotherapy plus a new treatment agent.
Another routine scan in April 2018 showed that the cancer was again back in her bones (and most probably bone marrow). Rosie received chemotherapy and her parents began researching clinical trial options in the UK and beyond.
Rosie currently has some disease still evident and doctors are concerned she will not be able to tolerate any more chemotherapy. Donna-Louise adds: “We’re at a crossroads in our journey and don’t know which way to turn. I just want to just pick up my child and run, run, run – but Rosie’s such a fighter, so a choice we have none.”
“Rosie loves life so much and brings such joy and happiness to all who meet her. She has fought this horrible disease since she was a baby, but now we are running out of options. NHS staff are amazing but without more resources and research there is little they can do by way of a cure beyond trying early-stage clinical trials. We never wanted to be here but Rosie deserves the best shot we can give her. We need your support to make sure she has a chance of beating neuroblastoma.”
Rosie Veronica’s fundraising campaign
Rosie’s family are appealing for your support to raise £222,000 to access immunotherapy (hu3f8) in Barcelona, to give her the best chance of beating this horrible disease and getting back into remission and it needed to begin immediately.
But unfortunately Rosie’s disease has since progressed and the planned treatment had to be cancelled. She is currently receiving chemotherapy which will be followed by MIBG therapy for four weeks starting January 16th, with both treatments attempting to get her disease back under control. Everyone is hopeful that Rosie will respond well and can then go ahead with immunotherapy in Barcelona. We will keep you updated with any new information.