For three years, Rupert had continuous intensive cancer treatment for Stage 4 High Risk Neuroblastoma. Throughout his treatment he remained lively and full of fun.
Sadly, Rupert’s cancer remains within his bones. Doctors have told us that Rupert does not meet the clinical criteria set for ‘high dose chemotherapy’ or the potentially lifesaving ‘immunotherapy’ as he falls into a tiny rare subgroup called Refractory Neuroblastoma.
His specialist consultant in London explains that Rupert’s treatment is now in ‘uncharted waters’, with no clear direction as to what to do next as there is no effective treatment within the NHS.
But the world is a big place, bigger than just the NHS!
They continue to discuss what Rupert’s best options are, within the NHS, but ultimately their decision making is restricted by protocols, NICE guidelines, availability of trials and drug licensing agreements.
Rupert, is 6 years old and has already tolerated two years of horrendous treatment and remains not just well but he is full of energy! Every consultant we see comments upon how surprisingly well and energetic Rupert is given the extent of his disease and treatment received.
On paper he shouldn’t be!
Rupert has bounced through treatment, exceeding expectations, and he certainly does not conform to the statistics.
Even as I type this, I just can’t believe that this is happening. I am completely devastated and it is so inconceivable to us that Rupert has exhausted treatment options within the NHS. Ultimately, the best chance Rupert has of a future, of defeating his crocodile, is for us to directly pay for his treatment. There is a chance of effective treatment, but not within the NHS.
So, we now turn our fundraising efforts, to directly pay for Rupert’s treatment.
To help save Rupert, to give him the best chance to continue with his mischievous, lively and energetic life, we need your help to raise over £750,000 to fund Rupert’s immunotherapy and future treatment abroad. Treatment he needs as soon as possible, before his cancer progresses.
Immunotherapy for Neuroblastoma is routinely used in America, and is proving to be very effective, prolonging children’s lives and even helping children with Refractory Neuroblastoma, like Rupert, become cancer free. It’s used for Neuroblastoma in the NHS too, but Rupert’s refractory disease means he doesn’t meet the eligibility criteria for receiving it.
I have no idea if it is possible to raise this money, all I know is we must try.
We genuinely believed that Rupert’s treatment would be fully funded by the NHS so previous funds raised prior to February 2017 through Rupert’s Revenge, have gone direct to our previously chosen charities; our local children’s oncology unit, Cancer Research UK and CLIC Sargent. To February 2017 over £30,000 has been raised to help other children.
Sadly, it’s now Rupert that desperately needs your help.
We are so deeply grateful for the support and efforts already received and only wish that we didn’t have to ask. Every day I pray for a miracle or a winning lottery ticket as I just don’t want my son to die and cannot believe that this is happening.
Every day Rupert demonstrates his determination to succeed, to get on with his life, despite the odds. Planning all the things he wants to do once he has defeated his crocodile. Go swimming, go to school, play rugby and football with his friends, and be free from hospital and his crocodile.
So to help him carry on, we need your help; to buy Rupert his future.
There are many ways you can help Rupert; by making a personal donation, holding a fundraiser, getting sponsored to take on a challenge; or simply following and sharing Rupert’s crocodile story through his Facebook page, or talking about him during your next social event.
If there is anything you can think of doing, no matter how big or small, it will help make a difference to Rupert.