Sunday, October 22, 2006 0:39 AM CDT
Thursday 26th October
**UPDATE**
Well, Isaac has chicken pox. He is at the tail end of it now. He broke out in spots on Monday and his last new spot was last night. He has only had 5 spots. Isaac was immunised as a baby, however, they can still get it even if they are immunised. It just is a lot milder. So Isaac has not felt sick or had any fevers. He has complained a bit of being itchy. But he has been alright. Our main concern is Alan...he has never had chicken pox. We have a script to go and get him vaccinated. As for myself. I had chicken pox when I was 17 years old and it was not nice. Even though I have had it...and have some immunity to it...because FA and chicken pox do not mix and can cause bone marrow complications I have to go for a globulin injection in my buttock tomorrow morning..priority one. This will protect me for a few weeks against getting the virus and severity. So my haematologist has arranged for me to have it in the morning tomorrow some time. I don't like injections in the but. I used to have to have this injections all the time whenever I came in contact with people who had chicken pox...or an out break at school. I remember staring my haematologist down when I went into emergency to receive the injection. They had to give me two syringes.....in both buttocks at the same time and I would cry and scream. I am not looking forward to this injection...but I am sure I will handle it better than when I was a child.
So that is my latest news. I hope all of you are going well.
Love Charisse
***
Hello All,
I am very behind in my updating! Sorry about all that. It has actually been a tough month for me...more than you can imagine. There are so many things going on in the background here...in my life...that I would not know where to start.
Sleep insomnia has been a problem for me. This has actually been a chronic problem on and off for me for a couple of years, however, specifically this past year....since I initially got the first marrow results back that showed the slight increase in blast count at the beginning of the year. Even though I may not share heaps about all that is going on, this issue is always on my mind and sometimes I become so overwhelmed by the whole issue.
The research into whether a transplant is the way I want to go is a constant thing. I know, I know....I am not able to make this decision quickly at all. There is a LOT involved in my situation.
So where am I with that? First things first...I have to have a liver biopsy to check that my liver could even handle a transplant. The oxymethalone I used to be on has caused high liver enzymes. I am not on it anymore. In fact I have been off it for over 4 years now. However, my enzymes remain significantly high. It doesn't affect my general health and before Isaac was born I had a liver biopsy which didn't show there was any signficant damage...just decreased amount of bile ducts in the liver. However, this needs to be checked by the transplant team again to see if I could even go ahead with a transplant. Sometime soon this will happen. I know it may seem like things are taking a long time to deal with here....but let me reassure you that it is not because the doctors are delaying, but because we have needed to go at my pace. And I need to go slow at the moment...even when I feel things are urgent, I feel like I can only go at my pace. Otherwise, life starts to fall apart for me. I feel like I am going crazy. I will take as long as it needs me to feel right about anything.
Sleep is a problem. As I mentioned. I have been sleeping do badly that my judgement is impaired during the day. We are trying to get me into a sleep specialist right now.
What else is going on......my gynae surveillance is coming up in 2 weeks under anaesthetic....hysterscope and so on.
I know I have some more specialist appointments.
My sister is now 37 weeks pregnant and we can't wait for her to have the baby.
Isaac has been doing well. He started pre-entry preschool on Friday just gone. We had some tears and when he got home that day he told me that he had missed mummy and cried at the gate. Poor love. It is so hard to not cry as a mum when dropping them off for the first time. I gave him to the teacher who hugged him as I left. I had to get to my IVIG infusion. I have been a bit shaky this time around after the infusion but it went well.
Well, I am tired. Infusion tired....so it has been a big day at church and I am going to go and lie down. I am sure that there is so much more to update on....but some things slip my mind...let me think........
Oh yes, Isaac turns 4 years old in 2 weeks! Also we have the Christmas Pagaent coming up. Isaac can't wait. This is the first year that he has asked about Santa Clause.
Ah yes....I will leave it for now.
Love Charisse
