No Port now...and other updates :-)

Well, after seeing my haematologist again and having yet another discussion about the mediport, we have decided to not have one now. Because I do have lower neuts and are not using medication to increase my neuts because of the risk of leukaemia.....we are preferring to not have a port as long as we can get away with it. I am also not planning on transplanting. That was a decision made a while ago and so having the meds to increase the neuts just for the sake of a port is not worth the risk of leukaemia. We want to keep my marrow as stable as possible because I am not choosing transplant. I suppose I could always change my mind but I have a peace. I was worried about the port because of risk of infection and right now I am SO well and live reasonably normally from day to day because I don't get many infections. My neuts are between 500 and 1000 on a regular basis......except for that freak drop a month ago to 200. The other thing is that the port is for the IVIG alone and nothing else right now and my haematologist thinks that my levels of IgG may now handle me stretching from every 4 weeks to every 6 weeks now. That will also give my veins a break. So we will be trialing 6 weekly. I will have a couple more times of IVIG at 4 weeks and have my levels tested and then have it 5 weekly and levels tested and then 6 weekly and levels tested and we will see if I can tolerate it. It would be great to have them at 6 weekley as opposed to 4 weekly!

I am aware that if this treatment does get more intense or my veins completely shut down that the port may be necessary no matter the neuts but we will deal with that when and if that happens. If I ever had a transplant, some kind of line is put in anyway.

Yesterday I went to see my gynae/OB about the results to a few tests. All is well but due to some other reasons we might have to use ultrasound for cancer surveillance as opposed to a hysteroscopy for a while. No bad reason for this......but a good reason for it. Also we rang the Women's and Children's Hospital and they are happy for me to come back there for blood tests as they can use paediatric needles to access my tiny veins. Adult nurses are forever poking away but these people leave little trauma. I went there yesterday and they make blood taking SO easy! They use a butterfly needle which is real small and it is very easy. No pain and no trauma. So had bloods yesterday and will get results on Monday.

Well Isaac has been in year 1 at school for 3 weeks. Isaac loves school and the teacher tells us he is like a "machine". He sits there with great concentration and works so well. He is very particular with his work. Isaac even got a prize last week for being the best boy worker! We are proud of him. However, on a Thursday and a Friday he is really tired and grumpy. Yesterday when I went to pick him up he looked unwell! He was pale with really red eyes. I even asked him if he was ok! The teacher sat down with me for about 20 mins and explained that Isaac doesn't seem to be coping on a Thursday and definitely not a Friday. That is is such a good worker but his eyes glaze over on a Thursday afternoon and on a Friday is becomes very vague. They have a spelling test on a Friday and he wrote words like he couldn't even write! That is not him. On Thursday night when I tested him at home he got them all right. She thinks he is just too tired and so to help him out suggested that, if it is not a problem with us, that Isaac only has a half day of school on the Wednesday so he can rest. She told me that they do no new work on Wed afternoons. Isaac is a big sleeper. Before he started reception last year he was sleeping for about 1.5 to 2 hours in the afternoon still. He actually needs a lot of sleep to function. So year 1 is obviously very busy for him and he is concentrating so hard that he is getting exhausted. So for the rest of term 1, Isaac will have Wed afternoons at home from about 12pm. She suggested him not being woken for school on Fridays. However, we thought we would try the Wed thing first and then if he still isn't coping, let him sleep in on a Friday and have him at school by 0930am instead of 0825am. She said that with this extra rest he can then concentrate on the things that are important and I agree. Isaac is one of the littlest in the class and the teacher thinks he is just that little bit younger too. Oh well....he is a hard worker and quite bright. She thinks he is an incredible worker.... We are also trying to get lights out at night by 7pm instead of 7.30pm. It is actually really hard. Because of daylight savings it is still bright outside at 7.30pm, let alone 7pm! We pull all the blinds down but still........night time routine is quite busy! This drama with tiredness only reminds you how much 6 year olds are still babies in different areas. It is so important for them to have plenty of rest still.

Well, Saturday today. We have a kid's birthday party on this afternoon so that should be fun.

Tomorrow is church and I am worship leading tomorrow. I always get a little nervous but trust God that it will go well.

Last Sunday I shared something with the church and at the end of the service we had an alter call and I was called to pray for these people. God is stretching my boundaries. I saw Him work awesomely!

Oh! I dreamt about Teresa and Tyler Clifton and TS, Emma and Violet! Haha......it was such a vivid dream! Ha! Alan and I went to visit them and knocked on their door. There was lots of crazy moments and laughing. It was a fun visit.....hehe....if only it was for real....hehe

Right, thanks for popping in. Got to go. I am lazy today and haven't had a shower yet. Can you smell me? Hehe.

Lots of love,
Charisse