Was babysitting Max today, Tuk had to go for a check up. She was not feeling well, back and leg pain. Her blood pressure also too high, not enough rest is what the doctor said. Well Tuk must take better care of your self and don't stress too much. Also must be careful what you eat, tulang every time is not so great... bluek ha ha. Matthew help her out a bit, don't let her do all the job LOL . Anyway Max was super cute as usual and we had lot's of fun ...

Poak poak !!

Langerhans' cell histiocytosis (LCH)!!

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 ...

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.

Friday, February 29, 2008

Late side effects ...
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.

Clinical trials ...
Many children have their treatment as part of a clinical research trial. Trials aim to improve our understanding of the best way to treat an illness (usually by comparing the standard treatment with a new or modified version of the standard treatment). Research has found that people receiving treatment within clinical trials tend to do as well as, or better than, similar patients treated outside clinical trials. This does not mean that trial treatments are always better; hospitals that carry out trials do however have access to good equipment and follow precise guidelines when giving treatment.
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

Follow-up ...
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.

Your feelings ...
As a parent, the fact that your child has a serious illness is one of the worst situations that you can be faced with. You may have many different emotions, such as fear, guilt, sadness, anger and uncertainty. These are all normal reactions, and are part of the process that many parents go through at such a difficult time.Your child may have a range of powerful emotions throughout their experience of illness.

14.02.2008
I'm feeling totally helpless,wish I could make it all better for you !

References ...
This section has been compiled using information from a number of reliable sources.



Bone Marrow Biopsy...

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)

Bone marrow biopsy

Isolation room!!

Max shifted to the isolation room, that means no visitor aloud to enter his room only mom and dad. Even if he looks great and is full of energy from the outside, the inside of him is still very sensitive and he is easy to catch bacterias. So please, anyone who has a flu, cough or any other kind of illness that can spread to another person, do not visit Max. Yesterday he had skin and bone marrow biopsy. He said his back is pain, ohhh... poor thing... but anyway he is a fighter!!

On top of the world again !!

Hey good news, it might be just one bacteria that made Max so weak. As soon he receives antibiotics everything looks great again. The tests aren't over yet, Monday he will have to undergo a bone marrow biopsy and they will take skin sample. Have to wait for that result, just to be sure, the ex ray showed nothing unusual. Bought him a yellow cab, he always wanted it. He was very active, had good mood and was laughing all the way. He didn't look ill to me. Soon he will be no more botak, his hair is growing really nice and even, so Tuk keep your finger off his head LOL ...

We thought we might lose him !!

Last night we went to KK after Tuk had called us and told us the bad news that happened to Max, Max was taken into KK hospital because he had high fever and rashes. Tuk was crying, she could understand what was going on with Max. His temperature went up to 41 and overheated his brain which cost Max totally memory loss. He didn't recognize his mom or dad and wasn't able to talk or even to look at us, let me tell you that was very scary. I was very afraid of losing him and now imagine the parents, oh dear, that is hard to swallow. At about 10.30pm he started to regain his memory, he recognized his mom, dad and even me and gave Vanessa a Hi5. Matthew's sister came to the hospital too, other friends called to ask about Max. Mika's mother even topped up Tuk's hp, so that she could call her and ask about Max's condition. We were glad when Max started talking and went home relived, knowing that Max was a bit better now. Tuk and Max can have their sleep now. Lets wait till morning then we see further, they are going to take some skin and blood samples and we have to wait for the results ...

With Love from Nadya !!

written by Nadya

im so happy to see max's pics.
he seems so happy. im glad he is.
at least for a long time now.
tho i've read abt his sickness again, its extremely hard to accept the fact that he suffers frm it.
but we all haf to pray for him.
its ok if both parents dun want to do the bone marrow.
cos i noe how they felt.
they rather spend the rest of max's time in this world then take the risk n what happen after that, only GOD knows.
Thanks leila, for being thr for them.
im glad u nvr fail to be thr for them, be their friend when they r in need etc.
if only i could b thr too, i would.

but seriously, i think im not needed so yeah.
-it's okay-

ur happiness is mine too.


reply for Nadya from Leila
Who said you are not needed :)
thanks for your kind words, you are a very good friend too.
hope you don't mind that I copied your text to Max blog,
I wanted Max family to show that you care for Max...

(if you feel not comfortable with it "sorry" just let me know & I'll delete it)

Max at the Zoo !!

Returned LCH symptoms !!

Max had a check up at the KK Hospital today. Since one week he has rashes on his back and head, we all got worried what the reason was, of course we hoped it was just an allergic reaction, of something he ate or touched but we were wrong. Today the doctor said that the LCH is back again (as seen trough the rashes reappearing)and that she would urge Matthew and Tuk to let Max have a bone marrow transplant, that is exactly what Matthew and Tuk don't want Max to go trough. Many of the young kids at KK had lost their life trough the transplant, even I knew a few of them. Just recently a little Malay boy had gone trough the transplant and lost his life after he had it done. I'm not a doctor and I can't tell what even the doctors can't answer, would Max survive after the transplant. There is a really high possibility that he won't, Matthew and Tuk know that. The problem is that once they do the transplant, you will not be able to receive chemo therapy and if it did not work, doctors will be unable to do anything further, there is no turning back. The other problem is the bone marrow itself, Max has so much mixed genes, it wouldn't be easy to find the same match even Mishal (Max's sister is not really a good match)...

Bone marrow transplantation is an increasingly effective treatment for leukemia and several other malignant and nonmalignant diseases. However, there is growing concern about possible late consequences of compromised immune function and of treatment, particularly new cancers resulting from the total-body irradiation and high-dose chemotherapy used as conditioning regimens for transplantation. Few studies have assessed the risk of cancer among long-term,survivors of bone marrow transplantation.

Marina Barrage 2009 !!

Went to Marina Barrage and celebrated New Year over there. We had a picnic with plenty of Nasi Lemak. We had a great spot with a super view to catch the firework. I was awesome!! We stayed til 2am. Poor Matthew,Sazus and Amma who had to work a few hours later ...