I'm not quite sure whats going to happen tomorrow. I may have to take a shift with Mariana. And by shift, I'll be playing it out for 18 hours to 2 days. I want to take a shift, let my mom stay here at home for a while. I cannot stand her not being here. It makes me nuts. I'm just watching my sisters and brother all day, and they seem misrable without my mom.
Over the past couple years, since Mariana has been ill like this, the illness has become her idol. It's nearly all she talks about, it has taken priority in her life over every other issue. She only buys food that Mariana can eat with a few exceptions. Not to say I mind, I eat out enough to stay with a very veritile diet, but William is very thin because of the lack of fat in our house, and Jette and Ellie flip out amd gorge when presented with Sweets.
Mariana's illness is known as Mastocytosis.
Mastocytosis is a rare disease characterised by an increase in mast cells number. Mast cells play an important role in the self-defence of the human body. Mastocytosis patients, however, have too many of them. The cells react to 'triggers' (in food, for example) by releasing chemicals, which cause symptoms that depend on the part of the body where the mast cells are. This makes mastocytosis a very 'personal' disorder: what is true for one patient will not necessarily hold for another.
Mariana has an advanced form of it that is in less than two percent of all patients. She has the Bone Marrow version of that paticular form, which is about as rare as being hit by a meteorite. Masotcytosis has only 40,000 'victims'. Just to give some perspective.
I confirmed this by going to a lot of Masto-research sites. Out of the 70 cases in the USA like Mariana's, there have been 60 that have caused the blood cancer known as Leukemia. Those cases are very similar to Mariana's. There're cures for Leukemia, but not for blood marrow Leukemia. Normally, it doesn't turn into Leukemia for decades. But, Mariana's condition is severely advanced. Most people who struggle with the syndrome are 30 to 40. At this rate, I'll predict that if it does turn into Leukemia, it will within the next 9 months. There is no cure for Blood Marrow Leukemia. there is treatment, but the treatment has never actually worked on a Mastocytosis patient for more than a few months. Mariana doesn't know. She has no idea that it can turn into Leukemia. I don't know if my mother knows, but... it would explain her exsessive worrying more than anything. One ray of hope is that She has more Gastro-Intestinal symptoms than Bone Marrow symptoms, it could be that the Gastro stuff causes the bone marrow stuff.
I've really struggled to accept this. I can't imagine her dieing. I really can't. I don't think I'd miss anyother family member more then her or Ellie. She could die. Not just explode in a reaction like she normally does. She could start to die. It just wouldn't be something I look forward too.
-Drew
Over the past couple years, since Mariana has been ill like this, the illness has become her idol. It's nearly all she talks about, it has taken priority in her life over every other issue. She only buys food that Mariana can eat with a few exceptions. Not to say I mind, I eat out enough to stay with a very veritile diet, but William is very thin because of the lack of fat in our house, and Jette and Ellie flip out amd gorge when presented with Sweets.
Mariana's illness is known as Mastocytosis.
Mastocytosis is a rare disease characterised by an increase in mast cells number. Mast cells play an important role in the self-defence of the human body. Mastocytosis patients, however, have too many of them. The cells react to 'triggers' (in food, for example) by releasing chemicals, which cause symptoms that depend on the part of the body where the mast cells are. This makes mastocytosis a very 'personal' disorder: what is true for one patient will not necessarily hold for another.
Mariana has an advanced form of it that is in less than two percent of all patients. She has the Bone Marrow version of that paticular form, which is about as rare as being hit by a meteorite. Masotcytosis has only 40,000 'victims'. Just to give some perspective.
I confirmed this by going to a lot of Masto-research sites. Out of the 70 cases in the USA like Mariana's, there have been 60 that have caused the blood cancer known as Leukemia. Those cases are very similar to Mariana's. There're cures for Leukemia, but not for blood marrow Leukemia. Normally, it doesn't turn into Leukemia for decades. But, Mariana's condition is severely advanced. Most people who struggle with the syndrome are 30 to 40. At this rate, I'll predict that if it does turn into Leukemia, it will within the next 9 months. There is no cure for Blood Marrow Leukemia. there is treatment, but the treatment has never actually worked on a Mastocytosis patient for more than a few months. Mariana doesn't know. She has no idea that it can turn into Leukemia. I don't know if my mother knows, but... it would explain her exsessive worrying more than anything. One ray of hope is that She has more Gastro-Intestinal symptoms than Bone Marrow symptoms, it could be that the Gastro stuff causes the bone marrow stuff.
I've really struggled to accept this. I can't imagine her dieing. I really can't. I don't think I'd miss anyother family member more then her or Ellie. She could die. Not just explode in a reaction like she normally does. She could start to die. It just wouldn't be something I look forward too.
-Drew
posted by Drew at 12:55 PM
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