The verdict
What a horrible day! I feel like I ate a big bowl of crazy for breakfast this morning. Nothing sets me off more than money problems. Second to that is the fact that I've been fighting with my insurance company to cover some of Shelbie's bills and my arthritis doctor bill that was over $1500.00. Then, I cleaned a bunch of houses today and all but one person had an excuse why they couldn't pay me today. It's so frustrating and I am down to nothing in my bank account which means no bills are getting paid until I get paid. So, most of the day has been spent in a panic trying to figure my way out of this mess.
I came home, after a mega sized melt down in my car on the way home from my last cleaning job, to find the kids' bone marrow results in my inbox. Ughhh. It's going to be really hard to explain but here goes.
First off, all the kids had neutropenia, Shelbie and Sam had Leukopenia in addition to a low number of neutrophils. Neutrophils are immature white cells that fight infection and they don't have very many of those right now. Not a surprise, they are almost always neutropenic these days and it shows in their blood counts. I was surprised that they had leukopenia or an overall drop in all their white cells. None of the kids have any trace of iron in their body! We keep trying to supplement with iron pills, high iron foods but for some reason, they just don't absorb it and keep it. We are trying to decide between a special iron pill or doing an iron infusion for all three. How much fun will that be, three kids up at the hospital getting an iron infusion? We have to be careful because if they get the wrong kind of iron, it will affect future transplants or red cell transfusions.
All three have 'empty' marrow meaning they just aren't producing enough of the three important cell lines, white cells, red cells and platelets. I was pretty much expecting this but thank goodness, they aren't to the Aplastic Anemia stage so that is a blessing.
There are a few more abnormal changes that I wasn't expecting at all and in fact have been really caught off guard by. Sam has dyserythropoiesis. This is an abnormality in the red blood cells and can develop into something very serious. In one article I read, it said that it can sometimes cause vision loss. That caught my eye since Sam has been having weird episodes of losing his vision in his left eye.
It's a lot to take in. Of course the doctor has his own perspective and calls this 'normal' as far as it relates to the kids and their normal. He tells me not to worry about it. For me, it is not normal because I compare it to what a healthy marrow should be and I am a mom. I don't want my kids to be sick. I don't want their cells to start changing and causing more serious problems than what we already have.
All in all, it's been a really disappointing day and honestly, I am trying to stay positive and hopeful that things are going to turn around for us. Seriously, it's been one hard thing after another and it's really getting hard to believe that we aren't due for some good news soon but it never seems to come. I know that God doesn't come to our rescue at the first sign of trouble; He likes to see us work at our problems, have a little faith and trust in Him and then at the last moment, the moment of great despair, He swoops in to help. Sometimes, I wish I wasn't so strong and stubborn to keep thinking everything is going to be okay because I keep prolonging the great despair moment and quite frankly, I've had enough. Maybe if I just gave up and quit trying to be so strong, then help would come. Who knows. I'm done trying to guess what is going to happen next. I will say this, I came pretty close to a great despair moment earlier today. It's not a fun place to be.
Tonight, we are going to try to enjoy a movie in our new 'family room'. I made a make shift room in the basement and we are going to set up our cheap projector and eat ourselves into a senseless frenzy. Sounds like a good time if you ask me and hopefully those bills will have paid themselves, the kids marrow will repair itself, an awesome job offer will be sitting on the step and all will be well when I emerge from a mountain of Oreos and hills of cheesy Doritos sometime after the 4th of July! Cheers.
I came home, after a mega sized melt down in my car on the way home from my last cleaning job, to find the kids' bone marrow results in my inbox. Ughhh. It's going to be really hard to explain but here goes.
First off, all the kids had neutropenia, Shelbie and Sam had Leukopenia in addition to a low number of neutrophils. Neutrophils are immature white cells that fight infection and they don't have very many of those right now. Not a surprise, they are almost always neutropenic these days and it shows in their blood counts. I was surprised that they had leukopenia or an overall drop in all their white cells. None of the kids have any trace of iron in their body! We keep trying to supplement with iron pills, high iron foods but for some reason, they just don't absorb it and keep it. We are trying to decide between a special iron pill or doing an iron infusion for all three. How much fun will that be, three kids up at the hospital getting an iron infusion? We have to be careful because if they get the wrong kind of iron, it will affect future transplants or red cell transfusions.
All three have 'empty' marrow meaning they just aren't producing enough of the three important cell lines, white cells, red cells and platelets. I was pretty much expecting this but thank goodness, they aren't to the Aplastic Anemia stage so that is a blessing.
There are a few more abnormal changes that I wasn't expecting at all and in fact have been really caught off guard by. Sam has dyserythropoiesis. This is an abnormality in the red blood cells and can develop into something very serious. In one article I read, it said that it can sometimes cause vision loss. That caught my eye since Sam has been having weird episodes of losing his vision in his left eye.
It's a lot to take in. Of course the doctor has his own perspective and calls this 'normal' as far as it relates to the kids and their normal. He tells me not to worry about it. For me, it is not normal because I compare it to what a healthy marrow should be and I am a mom. I don't want my kids to be sick. I don't want their cells to start changing and causing more serious problems than what we already have.
All in all, it's been a really disappointing day and honestly, I am trying to stay positive and hopeful that things are going to turn around for us. Seriously, it's been one hard thing after another and it's really getting hard to believe that we aren't due for some good news soon but it never seems to come. I know that God doesn't come to our rescue at the first sign of trouble; He likes to see us work at our problems, have a little faith and trust in Him and then at the last moment, the moment of great despair, He swoops in to help. Sometimes, I wish I wasn't so strong and stubborn to keep thinking everything is going to be okay because I keep prolonging the great despair moment and quite frankly, I've had enough. Maybe if I just gave up and quit trying to be so strong, then help would come. Who knows. I'm done trying to guess what is going to happen next. I will say this, I came pretty close to a great despair moment earlier today. It's not a fun place to be.
Tonight, we are going to try to enjoy a movie in our new 'family room'. I made a make shift room in the basement and we are going to set up our cheap projector and eat ourselves into a senseless frenzy. Sounds like a good time if you ask me and hopefully those bills will have paid themselves, the kids marrow will repair itself, an awesome job offer will be sitting on the step and all will be well when I emerge from a mountain of Oreos and hills of cheesy Doritos sometime after the 4th of July! Cheers.
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