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Joey is doing OK. meaning he has some mild nausea, which is expected to get worse, but otherwise is faring well so far. Lets hope he continues to do so well. We've had lots of fun playing, visiting the playroom, watching movies, cuddling, walking the halls, going for wagon rides, etc...
This month is Histiocytosis Awareness Month (and to be fair it is also Childhood Cancer Awareness Month). So, I plan on raising some noise that this disease is here, that it exists. And I'm asking that people join me and help.
Below is some facts about Histiocytosis...
1- It is estimated that 8.9 of every one million kids under the age of 15 have histio. 76% of those cases occur before age 10. Of those children 3-5 of them have Langerhans Cell Histiocytosis.
2-The cause is unknown and there is no cure as of yet.
3- The cause could be an unusual reaction to the immune system of something commonly found in the environment. In speaking with one of the world's leading research doctors in this field we have been told that they are finding some possible genetic links at this time as well.
4-Chemo, prednisone and radiation are primary methods of treatments for histio.
5-Histiocytosis is a rare blood disorder. People affected with LCH produce too many histiocytes,or white blood cells found in normal people and intended to protect the body from foreign materials or infection. In those with LCH these cells multiply excessively and accumlulate in certain areas of the body, causing various problems. In Joey's case he had a tumor in his chest, up into his neck, lesions on his lungs, liver, and ear canal as well as lesions on his scalp.
6- 2 of 3 histo patients are female.
7- In some cases it can be life threatening.
8- It is not contagious and patients cannot infect anyone else with LCH.
9- In order to find a cure clinical trials are needed.
10- LCH is a orphan disease that receives no government funding.
11- This disease is most lifethreatening in children diagnosed under the age of 2. Most death occuring due to LCH, occur in children under 2.
I cannot tell you how frustrating it is that the government refuses to even consider researching this disease that is robbing my son of a normal infancy, toddlerhood, and potentially a childhood as well.
Please, spread the word. We never thought this could happen to us, and the stories I hear are so similar across the board. "They told us it was nothing for months", is what almost every single family tells me.
The government won't research this because it is an "orphan disease" meaning too few people are affected by it to warrant spending time or money on it (in their eyes). So instead, parents such as myself fight to raise awareness, spread the word, and raise money so research can be done. Unfortunately, we can't raise enough money fast enough because no one knows about this disease, and those of us that are living it are spending so much money fighting for our own kids that we often ca not afford to give much if anything.
At this point, we need awareness, so we can raise money. We need a cure. Without it, Joey will have to spend his whole life watching for signs, and getting scanned to check for it.