Let the whales be my friends: Returned LCH symptoms !!

Monday, January 5, 2009

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.

Disease Information

Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening. In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and radiation. Unlike cancer, histiocytosis sometimes goes into remission without treatment. The vast majority of people diagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages. It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an "orphan disease," meaning it strikes too few people to generate government - supported research.

LCH in Children

Langerhans cell histiocytosis (LCH) is a rare disorder that primarily affects children. The disease was first described in medical literature around the turn of the 20th century. A histiocyte is a form of white blood cell. Its job is to help destroy certain foreign materials and fight infection. For unknown reasons, patients with this disease have too many histiocytes (Langerhans cells). These cells accumulate in different organs and can result in a variety of symptoms. Langerhans cell histiocytosis has also been known as Histiocytosis-X, Eosinophilic Granuloma, Letterer-Siwe disease, and Hand-Schuller-Christian Syndrome. There are also a number of other terms which have been used to describe syndromes which are considered to be Langerhans cell histiocytosis (LCH). These include: Reticuloendotheliosis, Hasimoto-Pritzker syndrome, Self-healing histiocytosis, Pure cutaneous histiocytosis, Langerhans cell granulomatosis, Type II histiocytosis, and Non-lipid reticuloendotheliosis. The cause of LCH is unknown. It may be triggered by an unusual reaction of the immune system from something commonly found in the environment. It is not a known infection or cancer. It is not known to be hereditary or communicable. Over the years, cancer treatments have been used in patients with histiocytosis. Consequently, hematologists and oncologists, who treat cancer, also treat children with Langerhans cell histiocytosis. However, the disease is not cancer. Radiation therapy, if used, is given in much lower doses than that which cancer patients receive. The vast majority of patients will survive the disease. Some may develop life-long chronic problems, while others remain symptom free. In some cases the disease is fatal. Usually these are very young infants who have a rapid downhill course and do not respond to any known treatment. Whether or not the disease responds to treatment will often depend on the extent of organ involvement; however, it is often difficult to make definite predictions. Physicians will be able to discuss the patient's likelihood of responding to treatment and doing well. It is estimated that 8.9 of every 1,000,000 children under the age of 15 have histiocytosisSeventy-six (76) percent of the cases occur before ten (10) years of age, but the disease is also seen in adults of all ages.