need to have chemo 2 times a week for the next three month,unless the disease progresses to rapidly. If the chemo does help the road is still unknown as the doctors do not know what the result will be.
Amber has not been to work as she has been at the hospital 24/7 with Greyson. The hospital they have to go to is over an hour away. When greyson is able to go home amber will still have to travel there several times a week. The family is in need of financial help as they have a very long road to recovery ahead of them and with amber not working this has cause a big financial strain on the family. Hope and Greyson both are lost with out each other. Their lives have been turned upside down from being able to play with each other every single day at their moms, to now Hope now being unable to be with her mom and brother every day.Greyson has to be at the hospital for now.
Amber has a page that they she is using to update everyone on facebook, you can follow them by clicking the link below.
More about what Greyson has been diagnosed
HLH is a life-threatening condition. It is often caused by an inherited problem of the immune system, which is called “primary” HLH or “familial” HLH. In patients with primary HLH, cells of the immune system, principally T cells and NK cells, don’t work properly to destroy infected or damaged cells as they should. Because of this, the immune system becomes overstimulated and over activated. The immune system then begins to damage the patient’s own tissues and organs, including the bone marrow, the liver and the brain. Doctors can even sometimes see cells of the immune system “eating” other cells when they look at the bone marrow from a patient. This is called hemophagocytosis.
Some patients are diagnosed with what is called “secondary” HLH. This term is used when your doctor thinks your HLH may have occurred for a variety of different reasons, but not necessarily because of an inherited condition associated with abnormal function of the immune system.
- Jory Mikel
- Danny Gordon
Organizer and beneficiary
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