Information for parents from Bristol Childrens Hospital

The treatment Bobby needs is at the bottom of this page. It is a recognised mainstream treatment and has been delayed in the UK. (See e mail from Dr Penelope Brock Great Ormond Street Hospital, London.)

The 6 parts of the treatment are as follows:

Part one: The first part of the treatment is CHEMOTHERAPY which is given for a period of 70 days. During this time your child will need to be in hospital whilst receiving the drugs, which will be given intravenously (into a vein) through a central veinous catheter. The catheter will be placed under general anaesthetic. In between your child will be allowed to go home if he/she is well. The chemotherapy has side effects which will be explained. One off the effects is to lower your child’s defence against infections. If your child gets a fever he/she will have to come back into hospital to have intravenous antibiotics which will also be given through the central line. In order to see if white blood cell growth can reduce the risk of infections in these children half of them will be given growth factor. Whether or not your child will receive growth factor at this time will be decided in a ‘first randomisation’ (RO). The growth factor used is called G-CSF, or granulocyte colony stimulating factor. After the chemotherapy, if the staging results are good, the peripheral blood stem cells will be collected through another intravenous device often called a vas cath. Prior to this collection your child will need to receive growth factor to stimulate young bone marrow cells to come into the blood stream. These cells are called stem cells. The aim of this induction chemotherapy is to remove the tumour cells which had spread and reduce the size of the main tumour.

Part two: After this your child will have SURGERY with the aim of removing the main bulk of the tumour. Depending on the extent of the surgery your child will be in hospital 1 to 3 weeks.

Part three: After surgery consolidation using high-dose chemotherapy will be given. The aim of this treatment is to further eradicate cells which have spread to other parts of the body. This treament will suppress your child’s bone marrow to such an extent that it is called ‘MYELOABLATIVE TREATMENT or MAT’. (Maximum action Treatment) There will be two combinations of drugs used for MAT therapy. This will be the object of the second randomisation (R1). Your child will receive his/her own peripheral blood stem cells after this to rescue him/her. The stem cells find their way to the empty bone marrow cavities and start to grow. After a number of days new blood cells appear in the blood. The MAT therapy also has side effects which will be explained and your child will need time to recover. The time in hospital will depend on how your child copes with the side effects. He/She could be in hospital for 4 to 8 weeks.

Part four: The aim of this part of the treatment is to irradicate any residual cells left after surgery to the pimary tumour site and reduce the risk of a local relapse. For this local RADIOTHERAPY will be given to the sight of the operation. The radiotherapy will be given everyday for 2 to 3 weeks.

Part five: This part consists of DIFFERENTIATION TREATMENT. The aim is to turn any aggressive immature tumour cells, which might have survived the previous treatments, into non-aggressive mature cells. This effect on the cells is seen after treatment with certain vitamins, in particular Vitimin A (Retinoic acid). This is oral treatment given over a period of 6 months. Treatment is given daily for two weeks followed by two weeks rest. This is repeated 6 times.This is the treatment Bobby needs in New york.

Part six: This part will consist of IMMUNOTHERAPY  and will only be given to half the children so that we can really measure its effect. This will make up the ‘third randomisation’ (R2). Anti-bodies which target neuroblastoma cells will be given intravenously for 5 days 5 times during the same period of 6 months together with the differentiation treatment. The children who are selected to receive this treatment will not have the length of their total treatment prolonged but they will need to be in hospital for 5 periods of 5 days during this time.

* SEE E-MAIL FROM DR BROCK OF GREAT ORMOND STREET HOSPIAL**NOW NOT AVAILABLE IN UK FOR A MINIMUM OF 2 YEARS*Part of information sheet for parent/guardian Version 2: Dated 08/02/02Issued by Bristol Childrens Hospital to me on 1/9/05