Rupert Update from his Mummy:
Over the past few months Rupert has undergone further chemotherapy (ICE regime), in an attempt to stabilise and control his crocodile (aka cancer). This higher dose chemotherapy was advised by the NHS advisory panel, as they rejected utilising immunotherapy. Faced with no alternative active options, we reluctantly agreed. Forever hopeful it would work, without causing Rupert harm, or damaging his organs. However, following this treatment, it appeared from his scans etc, that it has made very little impact on his disease. Thankfully, Rupert once again, tolerated the treatment and his organs were unaffected. He is still smiling and causing mayhem! Showing unbelievable strength and resilience.
Unfortunately, the NHS advisory panel met again, and concluded on the 20th November, that Rupert’s crocodile maybe showing signs of progression. NO! – please NO!
Despite this, they once again confirmed that although immunotherapy would be an, “ideal treatment option, it is not available for Rupert within the U.K”.
As you can imagine this is devastating and extremely frustrating news. So many whys, tears, anger and sheer disbelief. This just cannot be happening.
Prior to this news, I had attend a Neuroblastoma parent conference, held by an amazing charity called, Solving Kids Cancer. At this conference, there were a number of presentations from numerous consultants from across the UK, Europe and USA. I was once again presented with the scientific data, that demonstrated the significant benefit that immunotherapy has upon neuroblastoma. It was clearly agreed by all medical consultants (including UK consultants) that immunotherapy was an appropriate and successful treatment option for neuroblastoma, even in cases of refractory and relapsed disease. Even if they don’t fully understand the why’s, it just works.
Give it to Rupert, I hear you cry! – (echoed by me for over a year now.)
The difficulty, within the U.K., is that this immunotherapy is only available to children, when on a pre-designed trial. Unfortunately, Rupert’s primary refractory neuroblastoma, does not met the set criteria. He essentially doesn’t tick the boxes, so it cannot be given in the U.K.
He can’t even have it on compassionate grounds;(like when given to Bradley Lowery). Rupert is currently deemed too well, despite having active cancer. Most children do not tolerate or even survive the toxic treatment, that Rupert has received so far. Almost 3years of continuous treatment. He just keeps bouncing back.!
Also NICE rejected the widespread use of immunotherapy for neuroblastoma (cost/benefit quota) just before it was withdrawn from the European market, by the pharmaceutical company. Bureaucratic red tape, that essentially means Rupert can’t access this treatment here in the UK. Google it and send an Email to your MP, children are dying because of this decision and the slow process of approving new drugs.
Rupert’s crocodile will not wait!
Therefore, within the NHS, there are NO treatment options left, except to wait and manage Rupert’s symptoms of progression.
This unimaginable nightmare, is being left to get worse!!
I just can’t do that, NO WAY!!
Rupert has to access immunotherapy, it’s his only chance.
Once I heard that the NHS advisory panel had once again rejected Rupert receiving immunotherapy, despite it being considered “ideal”, I made further enquiries to hospital’s outside the U.K.
To hell with it… I had followed the guidance of the NHS, suggested to pay for immunotherapy treatment within the NHS, contacted Harley St, discussed it at GOSH, but nothing. Just further delays and slim possibilities.
No more, the decision was made.
Rupert was going to have to leave the UK as soon as possible.
So I have been frantically searching, and self-referring Rupert’s case, specifically trying to source the “kinder” less painful humanised type of immunotherapy (Hu3f8).
Thankfully, Rupert has been given a potential life line.
Rupert has been accepted for evaluation of his disease at Barcelona. The consultant in Barcelona has access to (Hu3f8) immunotherapy and can use it on refractory and relapsed neuroblastoma cases, like Rupert. In addition, this advisory panel incorporates USA consultants.
USA treatment but a lot closer to home.
Rupert’s NHS consultant reviewed the proposed treatment, and thankfully supported our decision to take Rupert to Barcelona. (So kidnapping Rupert for treatment was not necessary…!!). Rupert’s doctors have all been fantastic, his Consultant said… “I’m only sorry that you have to leave the NHS, and the U.K., to receive it”.
So here we are. In Barcelona.
Fingers crossed his evaluation will bring some promising news. Rupert’s evaluation will happen over the next week, with the proposed six-month treatment happening soon after.
I will keep you posted.
As this proposed treatment is not approved by the NHS we are unable to receive any financial assistance from NHS England /EHIC. If it was an approved “boob job”, or knee surgery, then yes, but his treatment is not available within the NHS, so NO.!! More bureaucratic red tape.
Therefore, all Rupert’s treatment will have to be self-funded. Every drug, blood test, scan, blood transfusion and hospital admission will now incur a charge. €250 buys him a blood transfusion.
Thankfully, your fantastic Rupert revenge fundraising, opened this door. Thank you all so very much.
It has allowed him to start the initial phase of this proposed treatment.
Please continue to support Rupert if you can, he desperately needs your help. We already know we have insufficient funds for complete treatment, emergencies or any complications, but we have no real choice but to try. A trust fund legacy will not bring Rupert back, but the money raised so far, is the start of his future, we want to beat this crocodile.
I hope you all agree.
Please press share, donate…..he needs your help.
Where there is life, there is hope, and I just can’t bear the thought of doing nothing. Rupert only has one chance of life and he certainly has not given up fighting this crocodile.