A video of Max when he was just a few month old...
Langerhans' cell histiocytosis (LCH) in children ...
This information is about Langerhans' cell histiocytosis (LCH) in children.
22nd June 2007
"I know you're feeling poorly. I'm sorry. But I believe there are better days ahead."
How common is LCH ...
About 50 children in the UK develop Langerhans' cell histiocytosis (LCH) each year. It can affect children of any age, and is more common in boys than girls.
LCH is not strictly a cancer but, rather, a cancer-like condition that may be treated with chemotherapy. In its more serious forms LCH can behave like a cancer and is therefore usually treated by children's cancer specialists (paediatric oncologists).
Langerhans' refers to Dr Paul Langerhans who first described the cells in the skin from which LCH develops.
Histiocytes are cells which are part of the immune system and are found in many parts of the body. There are two types of histiocyte: macrophage monocyte cells which destroy harmful proteins, viruses and bacteria in the body; and dendritic cells which stimulate the immune system. Langerhans' cells are dendritic cells and are normally only found in the skin and major airways. In LCH, the Langerhans' cells are abnormal and spread via the bloodstream into many parts of the body, including the bone marrow, skin, lungs, liver, lymph glands, spleen and pituitary gland. When Langerhans' cells are present in these tissues, they may cause damage.
LCH is divided into two groups:
single-system LCH, when the disease affects only one part of the body, for example, the skin or the bone
multi-system LCH, when it affects more than one part of the body.
Causes of LCH ...
How LCH diagnosed ...
A variety of tests and investigations may be needed to diagnose LCH. X-rays will often be taken of the bones, the skull, and the lungs. Blood tests will also be taken. These tests help the doctors to decide if the disease is a single-system or multi-system type. Tests are likely to include the removal of a sample of cells (biopsy), and this is usually done in an operation, under a general anaesthetic. The cells are examined under a microscope. An MRI (magnetic resonance imaging) scan of the brain may also be carried out.
Any tests and investigations that your child needs will be explained to you. The general information on children cancers gives details of what the tests and scans involve.
Treatment ...
Single-system LCH may disappear on its own without any treatment. This may occur following a biopsy. In some children, treatment such as surgery and corticosteroids (for example prednisolone) may be used.
Multi-system disease is usually treated with chemotherapy and corticosteroids. The length of treatment varies from child to child.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells, and corticosteroids are hormonal substances that are naturally produced in the body. Both chemotherapy and corticosteroids can help to destroy the LCH cells.
Side effects of treatment ...
Chemotherapy and corticosteroids used to treat LCH may cause side effects, and your child's doctor will discuss these with you before treatment starts. Any possible side effects will depend upon the particular treatment being used and the part of the body that is being treated.
Side effects of the chemotherapy can include: feeling sick (nausea) and vomiting; hair loss; an increased risk of bruising and bleeding; tiredness; corticosteroids may cause a rounding of the face (sometimes called a moon face); mood changes; and an increased appetite, which can lead to weight gain. All of these side effects are reversible when treatment stops. Friday, February 29, 2008 
"I know you're feeling poorly. I'm sorry. But I believe there are better days ahead."
How common is LCH ...
About 50 children in the UK develop Langerhans' cell histiocytosis (LCH) each year. It can affect children of any age, and is more common in boys than girls.
LCH is not strictly a cancer but, rather, a cancer-like condition that may be treated with chemotherapy. In its more serious forms LCH can behave like a cancer and is therefore usually treated by children's cancer specialists (paediatric oncologists).
Langerhans' refers to Dr Paul Langerhans who first described the cells in the skin from which LCH develops.
Histiocytes are cells which are part of the immune system and are found in many parts of the body. There are two types of histiocyte: macrophage monocyte cells which destroy harmful proteins, viruses and bacteria in the body; and dendritic cells which stimulate the immune system. Langerhans' cells are dendritic cells and are normally only found in the skin and major airways. In LCH, the Langerhans' cells are abnormal and spread via the bloodstream into many parts of the body, including the bone marrow, skin, lungs, liver, lymph glands, spleen and pituitary gland. When Langerhans' cells are present in these tissues, they may cause damage.
LCH is divided into two groups:
single-system LCH, when the disease affects only one part of the body, for example, the skin or the bone
multi-system LCH, when it affects more than one part of the body.
Causes of LCH ...
The cause of LCH is unknown. It cannot be caught from other people and it is not passed on in families.
How LCH diagnosed ...
A variety of tests and investigations may be needed to diagnose LCH. X-rays will often be taken of the bones, the skull, and the lungs. Blood tests will also be taken. These tests help the doctors to decide if the disease is a single-system or multi-system type. Tests are likely to include the removal of a sample of cells (biopsy), and this is usually done in an operation, under a general anaesthetic. The cells are examined under a microscope. An MRI (magnetic resonance imaging) scan of the brain may also be carried out.
Any tests and investigations that your child needs will be explained to you. The general information on children cancers gives details of what the tests and scans involve.
Treatment ...
Single-system LCH may disappear on its own without any treatment. This may occur following a biopsy. In some children, treatment such as surgery and corticosteroids (for example prednisolone) may be used.
Multi-system disease is usually treated with chemotherapy and corticosteroids. The length of treatment varies from child to child.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells, and corticosteroids are hormonal substances that are naturally produced in the body. Both chemotherapy and corticosteroids can help to destroy the LCH cells.
Side effects of treatment ...
Chemotherapy and corticosteroids used to treat LCH may cause side effects, and your child's doctor will discuss these with you before treatment starts. Any possible side effects will depend upon the particular treatment being used and the part of the body that is being treated.
Side effects of the chemotherapy can include: feeling sick (nausea) and vomiting; hair loss; an increased risk of bruising and bleeding; tiredness; corticosteroids may cause a rounding of the face (sometimes called a moon face); mood changes; and an increased appetite, which can lead to weight gain. All of these side effects are reversible when treatment stops.
Some children may develop after effects of the disease. These effects can happen within months or years of the diagnosis and are more likely to be due to the disease itself than to the treatment given. However, a few children may develop late effects from the drugs or the treatment they receive.
Possible late effects include reduction in bone growth, delayed puberty, hearing problems, and lung problems.
The treatment trials for LCH are set up and organised by The Histocyte Society, a group of international specialists in histiocytosis. Your child's medical team will talk to you about taking part in a clinical trial (if appropriate) and will answer any questions you may have. Written information is often provided to help explain things. Taking part in a research trial is completely voluntary, and you'll be given time to decide if it is right for your child
Between eight and nine of every 10 children who develop LCH will recover from it. Sometimes the disease can come back, and so children will have regular check-ups in the outpatients clinic.
Follow-up is also important to look out for late side effects.
If you have specific concerns about your child’s condition and treatment, it is best to discuss them with your child’s specialist medical team who know the situation in detail.
Max had bone marrow biopsy yesterday and they took some skin samples too. They are going to check if the LCH was coming back. Today the doctors found out that Max's liver is getting bigger, it can be due to the medication that he is receiving now. But it can also mean that the LCH is still there. Everyone is tensed, worry for the worst, what if the LCH is back, that would mean all the struggles for Max will have to start over again. Only a few days left to his 3rd birthday and Tuk was planning a trip to Thailand, to bring back their little girl to Singapore and reunite the family.
(daughter Mishal 1 year old,stay in Thailand with Tuks sister since she was 3 month old)
