James Dorrington
copyright stefdoris
December 2001
James Dorrington
copyright stefdoris
December 2001

At a bus stop in Billericay James experiences his first tonic clonic, a seizure that causes uncontrollable spasms in arms and legs. It is often perceived as an epileptic fit.

An ambulance brings James to Basildon Hospital. James has three further seizures. The doctor prescribes Phenytoin in order to control the fits.

A CT Scan (computerised tomography) is made of James´ brain. This is an x-ray technique, which enables the whole brain to be seen. A dye is injected into a vein so that the tumour can be seen more clearly. The scan lasts between ten and twenty minutes.

The scan reveals a left parietal bleed, a bleed that had been caused by a blood vessel which had burst through the pressure of the tumour. As yet the doctors are unsure whether the fits are caused by a problem of the blood vessels in the brain or whether the highlighted area in the CT Scan shows an actual tumour.
To be able to produce a clearer diagnosis James is transferred to the Parrot Ward at the Great Ormond Street Children Hospital in London. By now James feels fine. No headaches, no vomiting, no blurred vision. The medication keeps the fits controlled.
James stays at Great Ormond Street Hospital. Detailed plans are being made for a further scan.
An MRI Scan (magnetic resonance imaging) is being made of James´ brain. This is a different  and more detailed scanning technique compared to the CT Scan. It is used to confirm the presence of a tumour and to provide information about its exact location. The scan uses magnetism rather than x-rays. Again a dye is injected into the vein to highlight the tumour. An MRI Scan is not a painful procedure but it is noisy and claustrophobic due to the machinery needed. The process takes between one and one-and-a-half hours.

The MRI Scan confirms the haemorrhage (bleed) in James´ brain and highlights an underlying enhancing element. It proves to be a tumour in the left temporal lobe. A tumour is based on disfunctional development. It is an abnormal growth caused by uncontrolled cell division. At present the causes of brain tumours are unknown. They are not infectious nor are they proven to be inherited.

Plans are made for an urgent operation to open the scull and remove the cancerous cells (frontal craniotomy).
The outlook for a successful operation is positive as the tumour has been discovered at a relatively small size and is located in an easily accessible positon. In a four-hour operation the doctors remove the majority of the tumour. However, the tumour is positioned close to the speech centre. In order to avoid permanent damage to James´ motoric and speaking abilities it is impossible to remove all tumour cells.

After the surgery specimens of the tumour are analysed to ascertain the nature of the cancerous cells. It reveals that James suffers from a grade three glioma, bordering grade four. The medicine differentiates between four grades of gliomas, with grade one being a slow growing tumour compared to grade four as a fast growing tumour. James´ tumour is one of the most aggressive types of malignant gliomas. Nobody survives such diagnosis. However, an operation and consequent radiotherapy or chemotherapy are used to prolong the life expectancy.

After the operation the doctors prescribe James the steroid drug Dexamethasone. The drug helps to relieve the swelling that has been caused by the pressure exerted by the tumour and by the operation on the surrounding brain. Dexamethasone does not reduce the size of the tumour nor does it prevent its growth.


James and his family are being told that he suffers from a grade three glioma, a malignant and very aggressive brain tumour.

James takes the news calmly and shows a strength and courage which he keeps until the end.

During the days after the operation James recovers quickly. It surprises the doctors how fast he regains his strength and his fitness. He is released from the hospital four days later on the 7.November 2000.

McDonalds for dinner.
James meets Mandy Reynolds, the Neuro Oncology Clinical Nurse from Great Ormond Street Hospital, who is specialised for the care of children with brain and spinal tumours. Mandy becomes a permanent part of James´ life as someone who offeres medical and psychological support to James, his family and friends outside the hospital.
To avoid brain damage some malignant cells are left behind at the operation. Subsequent treatment intends to eliminate those stray cells. In James´ case this treatment involves radiotherapy. Radiotherapy is a painless treatment, which uses x-rays. Machines that are particulary powerful produce special rays that penetrate deep within the body. These machines are different from normal x-ray machines. The rays are supposed to destroy abnormal cells and prevent them from reforming. Radiotherapy stops the growth of cells by interferring with their normal function. Tumour cells are usually sensitive to radiotherapy treatment, whereas normal cells are relatively insensitive. Every person responds uniquely to the treatment.

During three planning sessions James is being prepared for his radiotherapy treatment. This involves a CT Scan  to plan the exact location of the treatment and the creation of a transparent mask ("shell"), which helps to direct the x-rays with precision.
James shortly after the operation.
Unsure of what will be done to his face James asks his sister Sarah to have her hand moulded first.
Blue tissue is used to avoid the plaster sticking to James´ hair. Oil and moisturiser stop the plaster cast sticking to James´  face.
The plaster cast is being made.
The plaster cast has been taken off - all in all a painless procedure.
The finished shell. The holes on the left and the right of the mask indicate the location of the radiotherapy treatment.
Six weeks of radiotherapy treatment start for James at the Middlesex Hospital in London. During the radiotherapy James has to lie on a couch. Radiographers help him to get into the correct position in relation to the machine that delivers the treatment rays. The transparent mask, which is strapped to the couch, insures that James lies completely still. The treatment itself  only lasts five minutes. James receives radiotherapy five days a week, for six weeks. This adds up to a total of 30 fractions at the standard dosage of 54 gray.

The human body is only able to cope with a certain amount of radiotherapy, as too much radiotherapy results in brain damage. After his first operation James received the maximum amount of radiotherapy. It is herefore impossible for him to have radiotherapy ever again.

During his treatment James continues to go to school and participates in a work experience project. Mandy Reynolds visits the school to inform James´ teachers of his medical condition and to enable them to cope with eventual seizures.
James´ annual school portrait which was taken during his radiotherapy treatment.
Due to the irritation of the brain caused by the radiotherapy James sufferes more seizures. The dosage of the drug Phenytoin, which is used to control the fits is increased.

However, generally James feels well during the six weeks of this intense treatment, travelling every day by train between Billericay and London. Only towards the end of the radiotherapy the side effects of the treatment start to kick in.
James has a seizure in the morning and one during the afternoon. He is rushed into Basildon Hospital and stays overnight to be under medical control. James´ sister buys McDonalds to compensate for the tasteless hospital food.
James continues with his radiotherapy and carries on with his life. No fussing!
James goes out with a group of friends to pre-celebrate his 16th birthday.
James celebrates his 16th birthday. Being given the choice of restaurant to celebrate he decides for the burger chain Wimpy to get some "real food".
James has a further seizure at home.
James´ family manage to arrange an invitation to Upton Park where James is able to meet the players of West Ham United - his favourite football team.

James has been a West Ham United supporter since he was four years old. There is nothing better and more exciting for James than a West Ham game.
WEST  HAM  FOREVER!
James has another strong seizure at home. This is a sign that the tumour is active and aggressive.
The last day of radiotherapy at Middlesex Hospital. James feels weak and has to take a taxi to the train station. It is the first time that James feels unwell during the radiotherapy treatment.
James feels very ill. He continues to vomit and has not eaten for ten days. He lost two stone in weight. He suffers from weakness, headaches, muscle wasting and double vision.
Normally six to eight weeks pass before a scan is being made after radiotherapy treatment so as to allow the therapy to take effect. The time gap is supposed to avoid inaccurate results. Any disturbances within the brain substance resulting from the radiotherapy needs time to settle down. However, considering James´ weak condition he is taken to the Basildon Hospital for a CT Scan. The scan reveals a big swelling around the cancerous area. It is unclear whether the tumour has re-grown or whether the swelling is a reaction to the radiotherapy treatment.

Basildon Hospital informs James that it seems that the tumour has re-grown. The diagnosis is not yet confirmed by Great Ormond Street Hospital.

James tells Mandy that he is worried about completing his GCSE´s. He is afraid that he might not be accepted into Sixth Form College to complete his A-Levels as he has missed so much time at school.

On the same night the scan is send to Great Ormond Street Hospital for further analysis. As a result an ambulance takes James to Great Ormond Street Hospital in London during the early hours of Saturday morning, 3.February 2001. Great Ormond Street is not prepared to confirm the diagnosis of Basildon Hospital regarding the re-growth of the tumour.
James feels physically better and requests to be discharged from hospital. The final results of the radiotherapy are expected in three days. James is anxious.
At a meeting at Great Ormond Street Hospital the doctors, surgeons and radiotherapists declare it to be unlikely for the tumour to have re-grown at such a fast speed. The swelling is thought to relate to the effects of the radiotherapy. It is unclear whether the radiotherapy has made an impact.

James continues to take Dexamethasone (steroid drug to reduce the swelling) and anti-sickness medication.
James and his family meet Doctor Sarah Fisher at Middlesex Hospital to talk about his progress and the radiotherapy. Doctor Fisher, too, states that the tumour is unlikely to have re-grown so fast.

James´ appetite improves. For weeks he devours jacket potato, baked beans and strawberry milkshakes. The steroids cause strong moods swings, alter his sleeping patterns and increase his appetite.
James is back at school. During the following weeks he feels fine and enjoys his football committments.
James celebrates the 25th birthday of his sister Karen.
James suffers another strong seizure on his way back from a part time job at a bar.
James talks to Mandy about his plans for the future. He would like to apply for a provisional driving license.

Due to tiredness he has missed two parties, which he declares to be "no good anyway".

He is keen to learn about his medication.
James is upset that he does not receive his National Insurance Card through the post. The card allows him to seek employment. For some reason James is convinced that he does not receive his card because he is going to die.
James feels low. He is anxious to have a scan in order to get definite results about the effect of the radiotherapy. He wants to plan his future.
James stops taking the anti-sickness drugs. The steroids are reduced. He is physically in good shape.
An MRI Scan is being made at Great Ormond Street Hospital to establish the effect of the radiotherapy.
The red arrow shows the actual tumour. On the scan on the left side dye has been injected into James´ blood so as to highlight the tumour. The blue arrow points out the swelling around the tumour, which is caused by the pressure of the latter. The yellow arrow shows the division between the right and the left half of the brain. Normally both sides of the brain are equal in size. The scans show how in James´ case the left side of the brain asserts pressure and displaces the right side of the brain.
Great Ormond Street Hospital confirms what Basildon Hospital had diagnosed eight weeks before. The tumour has re-grown. James is told that the radiotherapy did not work.

Malignant tumours often show a great resistance to treatment and often re-grow. Unfortunately, recurrent tumours are often resistant to second-line treatment, meaning active treatment like surgical intervention. The chances of a long term cure are smaller than when the tumour is originally diagnosed.

The hospital discusses the option of a further operation with James and his family. However, the operation entails an even bigger risk of permanent disability and speech impairment. Further, no follow up treatment is possible as James has already received the highest possible dosage of radiotherapy.

Another option offered is chemotherapy. This invloves a trial drug, as the use of chemotherapy is still new within the treatment of brain tumours. James declines the treatment, because a successful outcome is not very likely. The strong side effects, the required stay at hospital and the memory of his mum´s suffering after her chemotherapy treatment promise too little a result as to be justified.

James feels well and decides to enjoy quality of life rather than being defined to a hospital bed for an uncertain outcome.

At this stage Great Ormond Street Hospital decides to replace active treatment with "palliative" care. This means that the medical team focuses on controlling any symptoms that may develop (such as headaches and sickness) in order to establish a good quality of life for as long as possible. Care is directed at preserving the patients  dignity and individuality and at providing practical and emotional support.

In James´ case, based on the severity of the re-growth of the cancerous cells the doctors expect the symptoms to occur in the foreseeable future. Those symptoms include speech impairment, one sided weakness, headaches, sickness and tiredness. The doctors prepare James for a life expectancy between two weeks and two months.
James is aware that he will be dying. He is coping with a hopeless reality by trying to keep busy. He wants to go on a warm holiday.

He is still insistent on achieving his GCSE´s. He wants to take his GCSE exam in Physical Education, which he passes with a grade A - the highest possible grade to achieve.

James asks Mandy to visit Billericay School to inform his friends, teachers and other school mates of his condition. She provides emotional and informative support for people who surround James.

James declares that he wants nobody "to fuss about" but instead to get on with things.
James´ family looks for alternative treatment to complement the care provided by Great Ormond Street Hospital.

During the following months James goes on five holidays between Portugal, Spain, Tenerife (twice) and Euro Disney. Mandy arranges for him and his family admission to the executive lounges at the airports. He is also allowed into the cockpit.

The Starlight Children Charity offeres James to fulfill a wish. He chooses a laptop.
Holiday in Tenerife.
James is feeling well. His family establishes contact with Angela Dickson, whose daughter Samantha also died of a brain tumour. Her family created the Samatha Dickson Trust Fund which supports research into the causes and possible treatments of brain tumours.

One of the projects, which the Trust Fund is supporting, is the work of Professor Geoff Pilkington at Kings College in London. He is trialing an anti-depressant drug called Chlorimipramine. The drug is intended to contain the growth of the tumour.
James decides to join the trail run by Professor Pilkington, taking the anti-depressant drug Chlorimipramine at a dosage of 25mg a day.
Holiday in Portugal.
James visits the Theme Park Alton Towers with his family and friends.
Holiday in Spain.
James´ sister Sarah celebrates her 21st birthday with a big party. James looks and feels great.
James goes jet skiing with his sister´s boyfriend Alan at King George Docks in London.
James feels great. The Chlorimipramine dosage is increased from 25mg to 50mg a day. He insists on a new MRI Scan. Great Ormond Street is reluctant.
Great Ormond Street agrees to do a MRI Scan.
Great Ormond Street Hospital at 10am. An unexpected result. The tumour has shrunk. The doctors at Great Ormond Street are unable to explain why the tumour has become smaller. They argue it might be a delayed reaction to the radiotherapy. James and his family are certain that the anti-depressant drug Chlorimipramine is the cause for the great news. The dosage is increased to 75mg a day.
James receives his GCSE exam results. He has done well and receives a place at Sixth Form.
Holiday in Tenerife.
James starts to help with the football training of six and seven year old boys in Billericay. He loves kids and continues with the training twice a week until the end.
James´ dad Terry celebrates his 50th birthday. James feels fit and well.
MRI Scan at Great Ormond Street Hospital in London.
The tumour has shrunk decisively. The swelling has reduced. The right and the left part of the brain are nearly similar in size. The unexpected result of the MRI Scan from 9.August 2001 is reconfirmed. The tumour has decreased in size.
James and his family are informed of the results of the MRI Scan from 24.September 2001.The scan reveals that the tumour has remained small. Against all original predictions Great Ormond Street Hospital offeres the option of a further surgical intervention. However, the risk of permanent disability and speech impairment remaines high. No follow up treatment like radiotherapy can be used, meaning that remaining cancerous cells can not be defeated. Consequently, the tumour is very likely to grow back. Given that no permanent cure seems possible James accepts that an operation would only add a few more days to his expected life span. Without the option of successful follow up treatment an operation seems pointless.

Great Ormond Street offers to make a functional MRI Scan which locates the position of the tumour in relation to James´ speech sector. James decides to await the result of the functional MRI Scan before making up his mind for or against an operation. He hopes that the Chlorimipramine might be able to defeat the tumour on its own.
James speaks with Mandy about the arguments for and against an operation. His doubts about the usefulness of an operation outweight the small chance of a prolonged life expectancy. He is worried about being defined to a hospital bed, missing his family and his friends. The possibility of losing his speech scares James.

He also does not want to get behind at school, finding it more and more difficult to catch up. Since his operation in November 2000 James lost  parts of his memory. He cannot remember various things that have happened in his life and it is harder for him to gain the academic results he used to have before the operation. For a determined person like himself it is difficult to accept such setbacks.

More than anything, James desires to lead a normal life as much as that is possible under the given circumstances.
James has a bad turn which does not grow into a full-blown fit. The tumour is active again.
James decides against a surgical intervention to remove part of the tumour. He knows that nothing can eleminate the tumour permanently He wants to enjoy his life as much and as long as he can. He would like to go part-time at school, concentrating on just one or two subjects. James is determined on getting a job, yearning to experience that part of life as well.
A new Scan reveals that the tumour has grown again. The original hope that the Chlorimipramine might be able to defeat the tumour is contradicted. The cold reality confirms that the tumour is active and resistant to any treatment. James is at a low point in his life.
James skull as seen from the front. The tumour has grown again. The swelling increased. The left part of the brain asserts pressure on the right part of the brain and displaces the latter as is shown by the yellow arrow.
To cheer James up James´ stepsister organises him a job at the Learning Development Unit at London Guildhall University. James starts to work as a Dyslexic Administrator. It is here where he meets his future girlfriend Stefanie. He is warmly welcomed by all his colleagues and proves to be a productive and intelligent member of staff. He loves the responsibility of a working environment, which is giving him the feeling to be grown up.

In the evening of his first working day a MRI Scan and an additional functional MRI Scan are being made at Great Ormond Street Hospital. The intention is to locate the position of the tumour in relaion to James´ speech sector.
Depressing news. The MRI Scan from 12.November 2001 reveals that the tumour has re-grown close to its original size within an astounding short period of time. This proves that the tumour is active and very aggressive. The Chlorimipramine is not able to contain the cancerous cells. An operation has become impossible due to the large swelling around the tumour.

The situation seems hopeless and devastating. However, James feels fit and well and concentrates on what lies ahead. In a situation which seems to brake everyone around him he remains positive and gives strength to others.
Holiday in Eurodisney.

James is in high spirits again. He is successful at work, enjoys love and feels physically fit.
James pre-celebrates his 17th birthday with his girlfriend Stefanie at a hotel in London.
James plays his last football match for Billericay Youth. Within the first minute he hits a post, closely missing a goal. He plays the whole 90 minutes of the game and provides a goal.
From one day to the other James feels tired and weak. He has difficulty to concentrate. Over the next days he continues to vomit. He stops eating. He has difficulty to speak. He sleeps most of the time. Trying to blank out the reality he is trying to convince himself that a stomach virus might be the reason for this sudden breakdown.
James´ 17th birthday. He feels weak but manages to read his cards and inspect his presents. By now he is most of the time asleep and barely speaks.
James attends the West Ham United game against Derby. West Ham wins a rare victory: 4:0. James´ last West Ham United memory is Trevor Sinclair scoring a wonder-goal.
The Great Ormond Street Hospital nurse Mandy visits James at home. Despite James´ belief that he is only suffering from a stomach virus Mandy tries to prepare him for the possibility that the tumour is very active.
James is unable to talk in sentences, mixing up words, communicating through gestures. He suffers from double vision and headaches. It is difficult for him to control his movements. He does not eat.
James is taken to Great Ormond Street Hospital in London where a CT Scan reveals that the tumour has grown aggressively. The doctors inform James´ family that he will fall into a coma within 48 hours.
Mandy visits James at home. James is by now unable to move himself. Ha cannot speak. His only way of communicating is by squeezin someone´s hand. Mandy prepares James´ family for the tragic hours that are to come.

His family and friends say good-bye to James.

James falls into a coma. His pain is controlled through Morphine.
James dies at 9.58pm on New Years Day.

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James has been the longest surviving patient with his medical condition at the Great Ormond Street Children Hospital. The normal life expectancy of patients suffering from a grade three glioma lies between nine and twelve months, whereby two of those months are often marked by suffering from side effects caused by the tumour.

James was told in April that he would have weeks or maybe a few months to live. He outlived that prediction and even experienced his 17th birthday, something the doctors never imagined to be possible. Altogether James lived for 14 months with the diagnosis of a grade three glioma. Apart from a general tiredness he felt fit and well the whole time. The effects of the tumour, like weakness and sickness, only started to kick in during his last two weeks.

James never stopped living his noraml life. He continued going to school, achieving remarkable academic results. Throughout he remained an active footballer and additionally continued to train little children twice a week.

He remained full of hope and trust in his future and in is strength. Eventhough James eventually lost the battle against the tumour he remained a winner throughout his fight. He was a remarkable person with an unbelievable courage and a genuine kindness of heart.

May he be an example to all of us!