When they were little
When the kids were little, it was way easier to lie to them and I was a great liar. I didn't have to do it very often because they were busy being kids and not really worried about what was going on in their life from a health standpoint. We went through a great period of time when everyone was pretty healthy.
Now that they are older and more mature, they realize that there is more to life than what exists in the backyard. Doctors speak to them and speak in ways they mostly understand. They have mastered the art of Googling just about anything they want to know more about. That means, they can read a blood test and pretty much figure out what is going on.
Earlier this week, I announced that bone marrow biopsies were in and everything was fine. I was hoping that would appease them and they would become occupied with something else in life. It's not easy having these conversations with your kids. At dinner on Tuesday night, Spencer said, "I want to know what your biopsy results were."
"I told you it was fine."
"I want details of the report, it didn't just say 'Fine' and if you lie to me..."
"Well, you know, there were some changes that are not entirely favorable but it's okay."
"Mom, when you buy a new car off the lot, does it keep getting newer and newer the more you drive it? We aren't stupid, we know we aren't suddenly going to be miraculously better. Give it to us straight up."
I gave in and shared the details with Shelbie and Spencer, things I haven't even really shared here in depth. In a nutshell, there are more changes towards myelodysplasia. We got the FISH (a specific test using dyes and complicated things I have never understood) studies back which they were only going to do if the cytogenetics looks suspicious. Well, they had to do them because of the new abnormalities.
The doctor called me earlier this week and said he wants to do further testing and studies on all three so that is set up for Monday. Once those tests come back, then some new things will start. Shelbie will have to have an infusion of iron. They have to use a special iron and give it IV over the course of a week which means everyday at the hospital for a few hours each day. I suspect that Spencer will have to do the same thing but I think Sam will be able to take a pill form. We shall see. Not looking forward to that.
That's the latest and greatest. I am getting worried about Spencer. He has been getting really dizzy and light-headed and has almost blacked out several times. It's been going on well over a month now. Last night, he was helping me drive back from Utah and it hit him hard. We had to pull over immediately and switch back. That would have been so scary if he had of passed out at the wheel. I hope we aren't getting into sugar issues. Diabetes is the last thing I want to deal with but it can be a common thing in Shwachman kids. He will be at the doctor next week for that too.
Now that they are older and more mature, they realize that there is more to life than what exists in the backyard. Doctors speak to them and speak in ways they mostly understand. They have mastered the art of Googling just about anything they want to know more about. That means, they can read a blood test and pretty much figure out what is going on.
Earlier this week, I announced that bone marrow biopsies were in and everything was fine. I was hoping that would appease them and they would become occupied with something else in life. It's not easy having these conversations with your kids. At dinner on Tuesday night, Spencer said, "I want to know what your biopsy results were."
"I told you it was fine."
"I want details of the report, it didn't just say 'Fine' and if you lie to me..."
"Well, you know, there were some changes that are not entirely favorable but it's okay."
"Mom, when you buy a new car off the lot, does it keep getting newer and newer the more you drive it? We aren't stupid, we know we aren't suddenly going to be miraculously better. Give it to us straight up."
I gave in and shared the details with Shelbie and Spencer, things I haven't even really shared here in depth. In a nutshell, there are more changes towards myelodysplasia. We got the FISH (a specific test using dyes and complicated things I have never understood) studies back which they were only going to do if the cytogenetics looks suspicious. Well, they had to do them because of the new abnormalities.
The doctor called me earlier this week and said he wants to do further testing and studies on all three so that is set up for Monday. Once those tests come back, then some new things will start. Shelbie will have to have an infusion of iron. They have to use a special iron and give it IV over the course of a week which means everyday at the hospital for a few hours each day. I suspect that Spencer will have to do the same thing but I think Sam will be able to take a pill form. We shall see. Not looking forward to that.
That's the latest and greatest. I am getting worried about Spencer. He has been getting really dizzy and light-headed and has almost blacked out several times. It's been going on well over a month now. Last night, he was helping me drive back from Utah and it hit him hard. We had to pull over immediately and switch back. That would have been so scary if he had of passed out at the wheel. I hope we aren't getting into sugar issues. Diabetes is the last thing I want to deal with but it can be a common thing in Shwachman kids. He will be at the doctor next week for that too.
Comments
Post a Comment