Treatment for Olivier - Our Golden Boy on Gab. Our son Olivier is just 5 years old. On 26th August 2021 Olivier was diagnosed with a rare type of brain tumor (cancer) known as a Diffuse Intrinsic Pontine Glioma (DIPG). DIPG is a highly malignant and aggressive brain tumor (cancer) located in the brain stem, almost exclusively affecting children. There is currently no known cure.
The location of the tumor the brain stem, makes it impossible to remove, and because it affects the area of the brain which controls the major functions of the body. DIPG commonly causes patients to experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. Children with DIPG also have problems with walking, coordination, speech, chewing, and swallowing. As the tumor progresses, it also interferes with breathing and heartbeat, which ultimately results in the child’s death.
Just a few days before Olivier’s diagnosis we thought he was a fit and healthy little boy and we had no reason to suspect there was anything wrong with him at all. He is great at maths and was doing really well with his reading and writing. He loves riding on his scooter and getting as many steps as he can on his Fit bit. Whenever we went on walks he always wanted to be ahead of everyone else. He would run so far ahead we would sometimes lose sight of him. He would run around the house just to try and get more steps on his Fit bit than his two sisters. He loved climbing and playing on the trampoline.
Towards the end of August 2021 we were walking in Snowdonia and Olivier tripped over a stone. It was the kind of fall a young child would experience on a regular basis, however, after his fall he started limping a little on his left leg.
A few days later Olivier came to the dinner table holding his left arm and hand in an unusual position. His fingers were curled up and his wrist was bent. We asked him why he was holding his hand like that and he said it was 'stuck'. We asked him to try a range of movements and he was unable to open his fingers and could not move his arm above his head.
We visited the doctor the following day and he noted that there was a slight irregularity with Olivier's facial movements on the left side. He suggested that as the symptoms, the limp, the arm and hand, and the face, were all affecting his left side, the cause appeared to be 'neurological' and we were told to go straight to the Accident and Emergency Department at our local hospital.
We went to the hospital and Olivier had a CT scan that same evening. The results of the CT scan showed a mass around the pons area of the brain stem and an MRI scan was arranged for the following day. The MRI scan images were sent to a multi disciplinary team of specialist consultants in the Children's Hospital in Cardiff and the following day we were given the worst possible news. Our greatest fears were confirmed when we were informed that our son had a brain tumor and that due to the location and complexity of the tumor, surgical removal would not be possible. Indeed, any attempts to remove the tumour surgically would likely be fatal. We were told that the type of tumor Olivier had was a diffuse intrinsic pontine glioma or DIPG.
* DIPG effects children, mainly between the ages of 2 and 12
* Just 30 - 40 children are diagnosed with DIPG in the UK each year
* The average life expectancy post-diagnosis is less than 12 months
* There is no known cure
* Radiotherapy is the only known treatment, however it only provides a temporary relief in shrinking tumors, that subsequently grow back more aggressively than ever We are broken hearted and are now facing one of the most difficult challenges that we could ever imagine, caring for our lovely little boy who doesn’t really understand what is going on, apart from the fact that he has lost the movement in his left arm and left hand, has double vision and is walking with a limp on his left side. He knows that there is something bad in his head and that he has to visit the hospital each day for treatment to try and make the bad thing in his head smaller.
When Olivier was born he had very blond hair, with lovely curls, and we called him “the Golden Boy”. Now this name takes on another meaning, as the life of our son has never felt so precious. We are determined to do all we can to find the best ways to navigate through this horrible disease, and hope to provide the best quality of life for our little Olivier, seeking out the best possible treatments for him.
Whilst there is no known cure for DIPG there are a number of medical trials that have shown some promise in slowing the progression of the tumor. As DIPG only affects around 30 to 40 children in the UK each year there is very little funding for trials and research to find a cure for this disease in this country. The majority of the trials are in the United States and a small number in Europe. Because of this, any potential treatment – which may extend Olivier’s life – is highly expensive and difficult to access.
In addition to enrollment on the various clinical trials, there is also the possibility of obtaining expensive medicines ‘off trial’ from private doctors in Europe.
The main issue that we will face in getting further help for Olivier, is the cost of treatment. We have been told that some of the clinical trials can cost as much as £750.000 for non US patients to access. Other trials in the US and Europe can cost in excess of £250,000. Just one of the ‘off trial’ medicines or supplements that we may be able to use can cost several thousand pounds per week.
We understand that the trial drugs and treatments that are available have not yet been proven to be a fully effective cure to DIPG, but the end of Olivier’s radiotherapy treatment puts us at a crossroads. Do we seek further treatment that might extend our little boy’s life, do we try to do something to help him, anything that might help even a little, or do we sit back, do nothing but make memories and hope for the best?
We have spent hours and hours studying and researching and talking with doctors and consultants and expert researchers and following many sleepless nights, we know that doing everything we can to help our Golden Boy, Olivier, is the only option. Whilst we don’t yet have a clear picture of the exact treatment that we will be able to provide for Olivier, we know that there is a relatively small window of time in which he might start a trial or other treatment post radiotherapy. We feel a sense of urgency to help Olivier, but without outside help, we will be unable to access the treatments that might help him. We have concerns about starting a fund raising campaign out on a large scale. We are also embarrassed that we find ourselves needing help but we need to push those concerns aside to do what we can for Olivier ….. so we are asking that you please help us to access the best possible treatment for our son, and therefore provide him the best possible chance of fighting this horrible disease.
Any funds raised through this campaign will be used to provide Olivier with medical care, access to medicine, and any possible clinical trials. If we find ourselves in a position where we do not require the funds raised, we will be donating any surplus to DIPG charities which help fund research, and families of children suffering with this terrible disease.
Richard + Marina