RaphaëlName: Raphaël

Location (city and hospital): Chaville, cancer institute Gustave Roussy in Villejuif

Illness start date (first medical visit): 3rd July 2007

Date of gliomatosis cerebri diagnosis: 23rd August 2007

Test confirming diagnosis: Biopsy

Medical treatment:

  • Anti-epileptic: Micropakine from July 2007 until May 2009
  • Tarceva from end of August 2007 until end of January 2008
  • Brain radiotherapy. 45 Gray in 25 sessions bifractionated carried out over 5 weeks (March 2008)
  • Temodal (Temozolmide) for 6 months (5/28 days) after finishing radiotherapy (from May 2008 to October 2008)

Now: Passed away August 24th 2009.


Raphael was born on 9th September, 1996 with no health problems in particular until Tuesday 3rd July 2007. He was 10 and a half years old and in CM2. It’s his last day of school; the scent of summer holidays is in the air. During break time, after eating his snack, Raphael falls in the playground, convulsing. We don’t know if he lost consciousness. Did it last seconds? Minutes? I don’t know. He is able to get up after. The school calls the fire-fighters, who take Raphael to the paediatric A and E department at the Ambroise Pare hospital in Bolonge, accompanied by one of his teachers. Having been told by the school, we were reunited with him mid-afternoon. The doctors give him a neurological examination and an electroencephalography. We were probably dealing with an epileptic fit.

The next day, we took Raphael to our GP, who prescribed him an MRI scan and recommended that we see a neurologist from Garches. I get an appointment for the MRI and the neurologist for Friday 13th July. After the MRI, the radiologist hands me the report with a grave face, telling me basically that ‘there’s an anomaly’. On the way home, I read the report that proposes three hypothesis; the most probable being Glimatosis Cerebri. I look on the internet for its meaning: it’s a malignant brain tumour that is inoperable and incurable, with an average life span of 14 months. It serves little to say that the sky had just fallen around me. That afternoon we had an appointment with the neurologist from Garche. She prescribed anti-epileptic medicine. I think that the tumour must be non-malignant. Raphael is hospitalised 2 days in Garche, the 19th and 20th July for some extra examinations: blood extractions looking for metabolic illnesses, visual and audio potential, lumbar tap, MRI scans, electroencephalography. The diagnostic confirms the brain tumour and, good news, a week after the first MRI scan; it’s stable.

The next stage is a biopsy, carried out on 9th August 2007 at Necker Hospital. On the 21st August, I return to Necker with Raphael to find out the biopsy results. Here, the neurologist tells us that the tumour is non-malignant but two days later we have an appointment in the Gustave Roussy Oncology Institute with an oncologist. I have never understood why they told us that the tumour was non-malignant, as Raphael’s medical report from the Gustave Roussy Institute stated that it was grade IV Glimatosis cerebri.

On 23rd August 2007, the oncologist tells us that Raphael is suffering from an uncurable tumour, Glioblastoma. Here, I fail to understand why she spoke to us about glimatosis cerebri. They suggest that we integrate Raphael in clinical trials for recurring brain tumours. Raphael starts oral chemo, Tarceva; a medicine that omits hair loss but has side effects such as acne spots, growing and curling of the eyelashes and provocation of infections on the toes.

At the beginning of September, Raphael starts sixth grade. He has some difficulties writing with his right hand and is a little slower than the other pupils, but he’ll be congratulated by his teachers throughout the school year.

During the Christmas holidays, Raphael’s health visibly deteriorates. He’s drowsy, it’s difficult for him to speak and he has more problems with balance and slowness. The MRI scan done on the 31st January 2008 confirms the progression of the tumour. They decide to stop the Tarceva treatment and suggest starting full brain radiotherapy. The radiotherapy begins in April 2008, with two half dose sessions per day for 25 days. 3 weeks later, Raphael’s condition improves; he regains his balance and talks much better. He tolerates the radiotherapy well but loses his hair. He wanted to have longer hair like most of his friends.

In the Easter holidays, we go to Greece. It’s the first time Raphael has been on a plane and in a foreign country.

In May 2008, we start a treatment based on Temodal, which Raphael tolerates quite well. He’ll take it for 6 months. Raphael leads a fairly normal life, he enters into fifth grade. He even suffers because he feels different from his classmates, due to his slowness, due to the fact that some of his classmates see him as sick patient.

The MRI scans continue to be stable until February 2009. In spring, 2009, we increase the dosage of anti-epileptics, as Raphael has lost weight. We start to feel that he is tired more often. We adapt his school timetable. He goes to class in the morning and his French and English teachers give him class from home.

In May 2009, seeing that the Micropakine is making him gain a lot of weight, (he’s gained 2 kilos each month since stopping the Temodal), I attend an appointment with his neurologist at Necker hospital. He is prescribes another anti-epileptic and we progressively stop the Micropakine.

Starting from the weekend of Pentecost 2009, Raphael’s condition quickly gets worse. In a few days he can’t go to class, he can’t walk alone, eat alone…

The final MRI scan on 24th June 2009 confirms the progression of the tumour. They tell us that the end is near. We are going to try the last treatment, but nobody seems very hopeful. Raphael is hospitalised from 30th June till 6th July in the Gustave Roussy Institute for a pack and a gastric reading (he has difficulties swallowing) and to start the treatment. They speak to us about palliative care.

Afterwards, Raphael is hospitalised at home. He loses his sight little by little, use of his limbs and words. Fortunately, he continues listening. We quickly stop the new treatment as Raphael is not tolerating it and his condition continues getting worse. Aside from Paracetamol to relieve a stiff neck, Raphael takes no medicine against the pain. His illness is not painful. However, he suffers psychologically due to feeling enclosed, for not being able to move or communicate. Days before his death, he is able to shout “I want to go out!” It was the last time he spoke. Communication with his 9 and a half year old brother is difficult, the mutual understanding has broken. It’s difficult to find activities that bring the two brothers together. We listen to audio books together.

On Saturday 22nd August, Raphael starts to have difficulties breathing. The doctors decide to give him oxygen.

Monday 24th August. The palliative care nurse arrived at 9am. We thought Raphael was sleeping. He was actually in a coma. His heart stopped beating at 10:45. He was 12 and a half, nearly 13, years old.