Deep thinking

Hi Guys,
sorry about the small update last time. I felt pretty bad from my infusion all week but now I feel a lot better.
My neutrophils have been going all over the place. They are up one week and then down the next...that trend all the time. They have been like this since the pneumonia. I didn't have problems with them before. Of course it made me worried when a couple of weeks ago the count came back at "o". I had a good chat with the specialist about it and he thinks the trend is showing that I have cyclic neutropenia. This can go on for a little while and can be caused by trauma like pneumonia and stuff. The week after the neuts were "0" they were 900 so they had come back up a bit again. I wonder what they are this count. The week after the 900. I find out this week. Due to the neutrophils going everywhere I have started with bad mouth ulcers. It is frustrating. I get bad mouth ulcers when the count is low but with it cycling so much they only start to heal and then I have more. I feel a little miserable about that. Hopefully the neuts will stabalise soon again. They may do this for a while.
My platelet count has stabalised more now. It is more predicatable now and is higher. My haemaglobin has stabalised well within normal range which is good.
I feel, physically, so much better! I am definitely getting back to my normal strength now. I have been waking much more earlier. I am doing better. I will be on track for my surgery in the new year....wow and then back to being weaker again. However, the surgery that I am having is very important to me even though it can take 12 weeks to recover.
I was told about 12 weeks to recover from pneumonia and it has been about 7 to 8 weeks now.
Surgery is different though. I don't know if I will recover faster or slower than what they have said but I am excited about the surgery. That must sound so weird to people. This surgery marks a new beginning in my life...I am not going to explain it further than that...but I am not looking forward to feeling sore and stuff...but I am looking forward to having it done and following the next part of my journey.
I am due a bone marrow biopsy sometime in the new year as well....hmm...something I am NOT looking forward to. Those times are always so anxious and a bone marrow biopsy kind of brings everything that I am scared of with FA up to the surface....blast counts, pre-leukaemia, full on leukaemia.....failure and everything that they check on more....oh dear.....even though Alan and I have chosen not to transplant it is still scary doing these biopsies...we have chosen to stay well informed so we would be aware of anything that could happen. Also, I can change my mind in regards to treatment...just with FA the ideal time to choose treatment is when your marrow is more healthy.

I have been feeling rather highly strung lately. We have had some new things happening....having a full time nanny. We were supposed to be interviewing to find the person who would be our permanent nanny and the nanny agency have had no one to give us! Obviously we have had one nanny because someone is coming but I have been feeling very unsettled and anxious about numerous things. We wouldn't usually have a full time nanny but we qualified for help in the home for 13 weeks free because I was so sick in hospital with the pneumonia and having a hard time at home while recovering. I am feeling much better now though.....so I have been a little anxious about some things. You know me.....once I start to worry about something it sticks in my mind until they are resolved and I get really anxious!
We do have a permanent nanny who comes every Thursday. That is very normal for me because she has been coming for a year and a half and it is all a part of routine. She is not free...hehe..I mean the others are obviously being paid but not by us...it is a service to people who need extra help in extreme circumstances. It is a good service.
The other thing I have been so worried about it my tongue. It has had white sections underneath the tongue on the side. I don't remember noticing this before and every day I wake up and look to see if it has gone. It comes and goes during the day in how white it is and if I have more ulcers it seems whiter. Weird! When I wake up it is more white than after I brush my teeth and wash out my mouth...may be a normal coating that comes when you have a sore mouth? May be I have had it before when I get ulcers. It is just that this is the first time I have had bad ulcers for a long time. The trauma from pneumonia and my marrow brought them on. I had not had bad ulcers for a year before that! Anyway, I have another ENT apppointment tomorrow and I will show it to him. He has been watching my mouth and said that we may biopsy some stuff if it stays around. So I have been anxious that he would tell me it is so important that I must cancel my holiday to Queensland, in Northern Australia, and have the biopsy done. I am only gone for 2 weeks and he may not be able to put me in right away and I may not even need the biopsy done. However, every holiday that I have done lately feels like FA has ruined it! That doesn't feel fair and sometimes I just don't want it to ruin it. I will go to my holiday. The holiday is just as important medically as well. I have been stressed lately and NEED to get away just with Alan and Isaac. I have actually been feeling highly stressed....I need that holiday. I need to be free and then I can continue with everything....I just need these two weeks. We leave on Friday....I will be back in time for my next infusion...welcome home!
After the holiday I feel that I might be able to get back to morning church...energy levels are better.
I may even be able to get back to work for a couple of shifts before Christmas! It has been such a long time since I worked at the hospital!
Anyway, tonight at church there is a concert for the kids. The group is called "Rock Fish", a Christian band that is like "High Five". I think Isaac will enjoy it and I know Alan and I will enjoy it.
This year we will be in Queensland when the Christmas Pageant is on in Adelaide. What a shame but we will have a good time on holiday.
Well, I have probably written a book by now....hehe..thanks for reading!

OH I just remembered some things. Alan is doing well. He has his final day with his work on Tuesday. He has finished! He starts a new job when we get back from holidays. This is exciting for the family but even more exciting for Alan. He has been hanging out to leave the job he was in....so that will be happening.

Isaac has an afternoon with his new school on Wednesday. He will be turning 5 on the 8th November. Can you believe it? My boy growing up! Starting his first year of proper school next year! He has 3 days and an orientation day that he attends at his new school this term. We will be away for one of those days. However, he will still be here for 2 pre-entry days and the orientation. Wed is his first pre-entry and he will be placed with his class. I am nervous! It is a new thing...putting Isaac in the hands of new teachers and new people ...new surroundings! I hope he will be all right...hehe...a mother who worries.

Also, a very special and important date coming up here in Australia. October 29th which is this Monday is FA Day. We are fundraising with the little yellow FA man which is a key ring. If you want to order the key rings please go to:

http://www.faday.org.au

There will be a link to the "donations" page where you can fill out something for an order of the FA man key rings.

Also the 29th was chosen in honour of my brother, Shannon. It is the anniversary of his death on that date. He has now been gone for 13 years!

Also, hear some stories of Australin people affected with FA on the FA page...
Ok, now I would have written a book...talk later.
Love Charisse