Ryan's story

We first realised that something was wrong with Ryan when he started complaining of tummy ache, he had been constipated for a week or so and after taking him to the doctors he was given laxatives.  The tummy aches continued to get worse and Ryan would sometimes be rolling around in pain.  He would also hold his back and tell us ‘Back hurts’. His symptoms continued to worsen and then we noticed that one of his sides bulged when he laughed or coughed.  This got us the ultrasound that eventually led to his diagnosis.  The bulge was nothing to do with the disease and was a weak tummy muscle.  We had been visiting the GP for weeks before we eventually got referred to hospital and by the time he was diagnosed Ryan had a 9cm by 11cm tumour between his kidneys, encasing his aorta and resting on his spine.  The disease had spread to his lymph nodes, bones and his bone marrow.

Between the age of 2 and 3 Ryan received 70 days of intensive chemotherapy, an 11 hour surgery, high dose chemotherapy followed by a stem cell transplant, then 14 days of radiotherapy and 6 months of cis-retonolic acid.  Ryan finished his treatment the day before his 3^rd birthday, he was well, happy and active for about a year and at the age of 4 we had our first family holiday abroad.

A week after returning from holiday routine tests showed that Ryan’s urine catecholamine’s were elevated, they were repeated 2 weeks later and again were elevated.  Ultrasound and x-rays were clear but an MIBG scan was arranged to be sure nothing sinister was going on and devastatingly this revealed the disease had returned in his thighs, pelvis, throughout his spine and in his bone marrow.  Our lives were again turned upside down.  Ryan underwent 6 courses of TVD chemotherapy, each time experiencing the painful side effects of mucusitis, he then had MIBG therapy at UCLH.  This left him with minimal residual disease and so he was able to have anti-GD2 immunotherapy with IL2 which we had in Greifswald, Germany as he did not qualify for the UK trial.  We were thrilled when the re-staging scans done in November 2011, at the beginning of the 4^th cycle of immunotherapy, showed that Ryan had achieved remission – his body and his bone marrow were clear of disease.

Just 3 months later in February 2012 we had end of treatment scans and received the devastating news that the disease has returned, this time with a tumour near his spine.  We have been told that if the tumour grows even another millimetre then Ryan could have a stroke, his consultants in the UK and Germany have agreed an immediate treatment plan of radiotherapy and chemotherapy, and will try and harvest Ryan's bone marrow which opens up more treatment options but our aim is to take Ryan to Germany for a Haploidentical Stem Cell transplant.  A recent conference held in Tubingen has shown results of this treatment to be very promising and gives us hope that he can beat this monstrous disease, the treatment will not be available to Ryan on the NHS and so we have started fundraising. You can read more about the Haploidentical Stem Cell Transplant by following the link below:
http://www.nbglobe.com/2012/02/27/tubingen-2012-neuroblastoma-symposium-from-bench-to-bedside/

Ryan starts a 4 week course of radiotherapy in Bristol Children's Hospital on Wednesday 14th March, at the same time he will be given chemotherapy after which the hope is that we can harvest his stem cells which will open up more treatment options.

This blog has been started to share the next chapter in Ryan's life with his friends, family and anyone else who's life Ryan has touched.  Ryan doesn't know he has cancer, he doesn't need to know what Neuroblastoma is or how serious the situation is.  What he does know is that there is a 'baddie' inside of him that shouldn't be there and more than anything he wants it gone so he doesn't have to keep going to hospital, as his badly misses seeing all his friends.  He knows that his mummy and daddy will always look after him and this is all he needs to know right now.

On the 8th of March Ryan went to Bristol to have a mask moulded to hold him still during the radiotherapy treatment.  This was the most traumatic experience he has been through in a long time.  That forgotten we started the diary the weekend before radiotherapy treatment starts.

What is Neuroblastoma?

Neuroblastoma is a childhood cancer. It is the most common cancer diagnosed in the first year of life and accounts for around 15% of cancer deaths in children.

Approximately 100 new cases of neuroblastoma diagnosed every year in the UK

Of these babies and children, around 50 - approximately half - will have high risk disease

The long term survival rate for high risk neuroblastoma patients remains less than 40%

Neuroblastoma is the commonest 'solid' cancer diagnosed in babies and children.

Neuroblastoma often occurs in the abdomen, usually from the adrenal glands, which are above the kidneys. Other places it may occur are in the back of the abdomen beside the spine, at the back of the chest and the neck.

Neuroblastoma can spread to other parts of the body like the liver, bones and bone marrow, lungs, skin and brain.

Sometimes no symptoms are present at the time of diagnosis, and neuroblastoma is the chance finding in a medical examination of a well baby. The first symptoms of neuroblastoma may be related to the presence of a primary tumour, which depends upon its location. Tumours situated in the abdomen may cause a swollen belly, stomach pain, constipation, or diarrhoea.

A tumour in the chest may cause breathing problems, often similar to a chest infection. A tumour resting on the spinal cord may cause weakness or difficulty walking.

Sometimes neuroblastoma is diagnosed a result of symptoms caused when it has spread to other parts of the body. This is called metastatic disease. These symptoms are often vague and can include fatigue and loss of appetite. Some children experience bone pain, some may have unexplained 'black eyes' or bulging eyes.

Many of these symptoms are similar to those of other more common illnesses. Unless a parent or doctor discovers a lump, a diagnosis of neuroblastoma may not be initially considered.

Neuroblastoma may occur at any age. It may be present at birth, or even be diagnosed on a scan during pregnancy. Most patients are of pre-school age, the average age for diagnosis of children affected by neuroblastoma is two years old. Neuroblastoma can also occur in older children and teenagers, or very rarely, in adults.