Weʼve raised £14,951 to fund treatment to help Mighty Magnus beat neuroblastoma.
- Funded on Monday, 6th May 2019
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Thankyou for visiting the Mighty Magnus Medicine Fund page. His family would like to give you some background to the situation they find themselves in. Before Christmas last year Mighty Magnus woke one night in pain which led to an admission to hospital. After many tests it was confirmed on the 4th of January that this 6 year old Viking warrior had high risk (stage 4) neuroblastoma. A large tumour had been found in his abdominal area and like many other children with neuroblastoma it had spread to his bones and bone marrow. He started chemotherapy to treat this aggressive childhood cancer the following day.
Neuroblastoma is a childhood cancer largely affecting children under the age of 5. It originates from embryonic tissue and unfortunately can be present for a long time before it is diagnosed. Approximately 100 children in the UK will be diagnosed every year, of those around half will be in the high risk category. Mighty Magnus has been placed on the standard treatment protocol that would be given to a child diagnosed with this disease anywhere in the world. It is a punishing, prolonged course of treatment over approximately one year with many different aspects, including chemotherapy, surgery, radiotherapy and stem cell replacement. It is a challenging illness to treat and due to the risk of relapse Magnus will require constant monitoring in the years following the initial treatment protocol.
Mighty Magnus has shown his Viking warrior spirit by achieving metastatic remission at the end of the initial block of chemo. He has cleared the disease from his bones and bone marrow and the tumour has reduced in volume by 85%. Further interventions on the protocol involve dealing with the remaining tumour and helping Magnus maintain prolonged remission.
The reason why Magnus' family now need to fundraise for medicine for Magnus is because the last element of the protocol, the immunotherapy dinutuximab beta, is not currently funded by the NHS. In the last few years this drug has been given to families in Britain under clinical trials but these have now ceased. NICE (The National Institute on Clinical Excellence) have recently reviewed dinutuximab beta and announced in May 2018 that they cannot currently support the cost of it for what it may offer. For a few children this is complete cure and for many others prolonged remission. The drug itself costs over £150,000 for one treatment cycle. Should Magnus have to go overseas for the treatment the costs could amount to over £400,000. This medication continues to be offered in Europe and the USA as a standard part of treatment.
The NICE appraisal has not closed and there are still talks continuing between the NHS Cancer Drugs Fund and the drug company. It is hoped by some that they may reach a resolution and the drug be provided by the NHS. However this is not at all certain. Furthermore due to the unpredictable nature of the disease it is important Magnus is able to access other emerging treatments at short notice over the years to come. These treatments may be required during the 5 years that follow the protocol he is currently on. (After 5 years the risk of relapse decreases significantly.) They are likely to be overseas and will have charges often running into hundreds of thousands of pounds. Thus to give Mighty Magnus the best chance of beating neuroblastoma Magnus' parents have decided to start fundraising so they are able to fund potential treatments as and when they may be required.
All monies raised will not be accessible by Magnus' family directly. Third parties have been appointed who will oversee and manage the fund providing for Magnus’ treatment and other potential needs as they may arise. In the event that Magnus is unable to use the money raised then the fund will be donated to charities that support families who are fighting neuroblastoma or who fund research into curing this dreadful disease.
Mighty Magnus's family would like to thank you for your support in helping their Viking warrior beat this horrible disease.
Mighty Magnus Medicine fundraising update further to NICE decision 12/7/18:
Today we were incredibly pleased to hear that NICE have passed the dinutuximab beta for use on the NHS. This news puts an end to a period of acute worry for our family. Mighty Magnus’ immunotherapy treatment is due in October and we now know this will go ahead without complications of funding.
When we started fundraising we knew that it may be passed. However we realised that we may need funding to access emerging treatments for Magnus available in other treatment centres around the world, further to this years treatment.
High risk neuroblastoma is a difficult disease to treat with a high risk of relapse. There are currently a number of trials available internationally that are looking to prolong remission or cure high risk neuroblastoma. These would be available to Magnus if we travel to the treatment centre and have funding available. Hence our family made a decision to commence fundraising knowing that further to this years treatment in the UK we may want to access trial drugs to give our son the very best chance of beating this aggressive childhood cancer.
We thank everyone who has supported us for their generosity. It means so much to our family. We are now taking advice and looking into our future treatment options for Magnus. As soon as we come to any decisions we will make this public. We would ask that the fundraising continue in the meantime as we may need to access treatments, often costing hundreds of thousands of pounds, at short notice.
As we set out initially, should we not use the money for treatment for Magnus we will donate it to neuroblastoma charities to use to fund further research into curing the disease.
Thanks once again for all your support,
Kate and Sandy.
- 5 months ago
Laura Peacock5 months ago
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May 3, 2019
In memory of Jorene SSoehren
May 2, 2019
I'm so impressed by Mighty Magnus' bravery and courage and who doesn't love a Viking! Happy to support you!
Apr 30, 2019
Half Helly's marathon madness for Mighty Magnus.
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in memory of Jorene Soehren with prayers
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