Riley's Journey
Donation protected
On 8th September 2015, we were given the devastating news that our beautiful four-year-old only son, Riley, had been diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG). This is a malignant tumour in the brainstem which is inoperable and at present has no curative treatment. His prognosis is just 6-9 months.
On 29th September Riley commenced a three week course of radiotherapy treatment designed to reduce his symptoms and halt the tumour’s progress for a period of time. He responded extremely well with a clear reduction in symptoms but we do not know how long this respite will now last. There are no other treatment options available on the NHS.
Shortly after Riley’s diagnosis, we asked for a second opinion regarding his treatment, or lack thereof, to ensure we had done everything we could to try and give our beautiful boy as long as possible. Through the response to this, and our own research, we became aware of some world leading treatment trials taking place in Bristol, only a two-hour drive from us. Professor Stephen Gill and his team have been researching and developing innovative methods for treating neurological disorders like DIPG for many years. We contacted the Bristol Team and asked them to review Riley’s scans and assess his suitability for this treatment – Convection-enhanced delivery (CED). Through pioneering brain surgery, very small tubes are placed directly into the tumour. They allow direct delivery of chemotherapy drugs that are usually unable to reach the tumour through conventional methods due to the blood brain barrier. Although extremely difficult to measure due to many factors, outcomes to date give reason to hope this may be the way forward in treating this type of tumour.
Riley travelled to Bristol on 08/01/16 for further scans and we were given the news that he may benefit from CED. Whilst not a cure, the treatment could give us considerably longer than the original prognosis. This treatment method is in the very early stages and we have carefully considered the risks as best they are known. Although it has been extremely difficult to decide if this is the right step to take, we feel it really does give Riley the best chance at survival, at least for now.
A clinical trial for CED is planned for later this year but Riley does not meet the criteria for it. The only way he could receive this treatment is if we can fund it privately. The initial procedure and chemotherapy infusion will cost between £35-£38,000. The following infusions will then also cost approximately £3000 each with at least four infusions expected to be given if all goes well.
Funds raised from this campaign will go towards the cost of this treatment, travel and other costs incurred at this time. We hope to raise money as soon as possible, every day that goes by is a day that Riley's tumour could grow making this treatment less effective or no longer viable.
Since Riley's diagnosis, we have been living with the knowledge that we will be losing him to this hideous illness in a matter of months. This treatment is the first hope we have had that we may have more precious time with our loving son so we will do whatever it takes to try and make it possible. We thank you, from the bottom of our hearts for reading our story and any donation you can make.
On 29th September Riley commenced a three week course of radiotherapy treatment designed to reduce his symptoms and halt the tumour’s progress for a period of time. He responded extremely well with a clear reduction in symptoms but we do not know how long this respite will now last. There are no other treatment options available on the NHS.
Shortly after Riley’s diagnosis, we asked for a second opinion regarding his treatment, or lack thereof, to ensure we had done everything we could to try and give our beautiful boy as long as possible. Through the response to this, and our own research, we became aware of some world leading treatment trials taking place in Bristol, only a two-hour drive from us. Professor Stephen Gill and his team have been researching and developing innovative methods for treating neurological disorders like DIPG for many years. We contacted the Bristol Team and asked them to review Riley’s scans and assess his suitability for this treatment – Convection-enhanced delivery (CED). Through pioneering brain surgery, very small tubes are placed directly into the tumour. They allow direct delivery of chemotherapy drugs that are usually unable to reach the tumour through conventional methods due to the blood brain barrier. Although extremely difficult to measure due to many factors, outcomes to date give reason to hope this may be the way forward in treating this type of tumour.
Riley travelled to Bristol on 08/01/16 for further scans and we were given the news that he may benefit from CED. Whilst not a cure, the treatment could give us considerably longer than the original prognosis. This treatment method is in the very early stages and we have carefully considered the risks as best they are known. Although it has been extremely difficult to decide if this is the right step to take, we feel it really does give Riley the best chance at survival, at least for now.
A clinical trial for CED is planned for later this year but Riley does not meet the criteria for it. The only way he could receive this treatment is if we can fund it privately. The initial procedure and chemotherapy infusion will cost between £35-£38,000. The following infusions will then also cost approximately £3000 each with at least four infusions expected to be given if all goes well.
Funds raised from this campaign will go towards the cost of this treatment, travel and other costs incurred at this time. We hope to raise money as soon as possible, every day that goes by is a day that Riley's tumour could grow making this treatment less effective or no longer viable.
Since Riley's diagnosis, we have been living with the knowledge that we will be losing him to this hideous illness in a matter of months. This treatment is the first hope we have had that we may have more precious time with our loving son so we will do whatever it takes to try and make it possible. We thank you, from the bottom of our hearts for reading our story and any donation you can make.
Organizer
Adele Blaker
Organizer
