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

Family Update

Hello All,
well I had my infusion on Friday just gone. They ran the IVIG too fast at one point and I had a reaction...black spots like you are going to faint and then I felt really weird, my arm was all firey and I felt like I couldn't talk. One of my favourite nurses noticed and corrected the rate and also turned it off so I would recover. He responded very quickly with the BP machine and making me comfortable while I had the silly reaction. I have felt a bit off following Friday as well with nausea and headaches. Hopefully it won't last long.

My blood counts were reasonable this week.

There is alot to update on but sitting here right now I don't feel up to it...sorry for the small update...I will come back again and update properly.
Love Charisse

brief update

Hello People,
well I didn't pick up the results to my bloods this week. I will get them on Tuesday even though I could have gotten them last week. I was SO busy last week.
I got a bit stressed actually.
I have been approved to have a nanny for 4 to 5 days a week for free because of the FA and recovering from pneumonia for 13 weeks. While this is really helpful I have also been a bit worried about things like, "how will Isaac and all the grandparents bond when I have a nanny around all the time"..."will I have any private time to myself or be followed around all the time"..."the days when Alan is home...do I have to share him with the nanny and will we ever be able to have time alone"...."when will we be able to just be a family" and "will familiy members stop visiting me because I now have a nanny to help".....and it goes on and on...I have freaked out and had trouble sleeping and been crying and feel strange and feel weird about welcoming someone who I don't know into the house and all sorts. My mouth has ulcers and inflammation througout which I know is always associated with major anxiety. I don't know how I used to live with this high anxiety a year or so ago...it is exhausting. I was worried that the nanny we had tried thought she had the job and yet I want to trial numerous nannies and choose between them.
Besides all of this...the nanny who we had the last 2 days of the week was really good and I can talk to her easily. She is not arrogant and works well with the mother at home and Isaac does like her....she is very good so I will put a tick by her name as one that I like a lot....so my anxiety is not based on her character but everything else that I worry about. However, having a nanny will make me be able to cope better while having so many appointments. It allows me to rest when I need to and be the best mum to Isaac. I thank Jennifer from FA because she has helped me to see this more as well.
It will help me and I we did apply for this because it will help me but when something happens that is new....you panic about how it is gonna fit in with everything else when it actually happens....we are funny as human beings I think.
I panicked when I employed my private nanny on a Thursday but now I couldn't do without her. She is wonderful and one of the family.....and I get rest and am able to be a proper mum with her around and we can go on outings and I have help and don't get as tired and when I am tired she tries to help me as well as look after Isaac. It is the best thing! So This other nanny who will come those other days...it should work out...and I will still see my family and get to do different things and get rest....
Friday this week is my infusion...please pray that goes well..I will have more bloods done again.
Ok, pray my tongue gets better and my mouth.
Our holiday is only 2 weeks away! YES!
I think I am finally not having trouble with my lungs from the pneumonia anymore...I don't puff! I think it is now just my whole body still getting fit and getting well...my marrow is taking longer than the lungs to get itself in order...but that is ok...they told me it would take longer. At least I don't get puffed anymore and any exhaustion I feel is not related to me not having good lung capacity...it is all FA slow recovery stuff!
Ok, got to go....need to go to church tonight.
Love Charisse

It's been a while

Hi All,
got some blood counts back. platelet have come up by 20 000 which is great. Neuts are back up to 1300 and liver results are still coming down which is good.

My chest ultrasound showed no more fluid on the lung...YES!
I am getting better but gradually. My other surgery is re-booked for January.
It is school holidays right now.
Had an ENT appointment to review my tongue. I had all that thrush and ulcers on my tongue and the whiteness which is decreasing but we wanted to make sure there was nothing to be alarmed about. Apparenlty I still have spots in a few areas on my tongue that the ENT want to keep an eye on just because I have FA. In 3 weeks I will go back to see him to see if they are gone otherwise we will probably biopsy thenm...what joys! HOwever, he is hoping it is just due to all the trauma and infection my tongue has been enduring...it is always scary going through this process.
In November for 2 weeks we will be taking a holiday in QLD, northern Australia where all my dad's family are...take Isaac to seaworld....should be nice...nothing will stop us from this holiday!!!!
Ok, better go to bed now.....
Thanks for checking up on me.
Love Charisse