Inside House Pictures

Hello All,
let's take a walk through our new house briefly. Now, these are not good quality pictures. Our camera has had it I think. I mean, I tried SO hard to not shake while taking these pictures and all of them ended up blurry. You will be able to see they are blurry but on the computer when I load them up they are SO blurry and look terrible. I am frustrated. I can never get good shots. We need a new camera because I don't think it is my ability anymore...it is the camera. Anyway. We start with the sunken lounge. You walk in the front door and this is the lounge on the left........the wall looks pinkish in the photo but it is no way pink. It is a deep, rusty apricot colour. Our room will look different again when we purchase our new lounge suite. We are holding on to these ones for someone else. They are not our lounges. There is a nice open, gass fireplace...and then a step up to the dinning room...... This is blurry...oh well...you can see it steps up to the dinning room....a couple of photos...then leads into the kitchen....

Oh....here is the kitchen. I will take a photo when there is no clutter and no dishes as we had only had dinner a short while ago and have not yet cleaned up....so the kitchen usually looks a lot nicer. It is, however, an older kitchen than our other house and we will re-do it sometime.

Ah yes...back to the dinning room which leads into the kitchen.

See how it leads into the kitchen....haha!

Ah yes...the view from the kitchen...once again...a lot of clutter still...I will take photos when there is no clutter. This is Isaac's play room here with all his toys...and the piano. It has 3 doors leading off of it...the laundry, the spare room and Isaac's room.

Isaac's room. He is actually asleep so I quickly took a brief photo but didn't want to disturb him. He wants his room painted light blue...we would get him some new curtains and stuff probably and put up all his winnie the pooh stuff again to make him feel more at home.

This is a terrible photo...our house really is more stunning than these photos...but this gives you an idea of the colour of our bathroom which I like and is quite stunning in real life....

Going down the hallway from the kitchen and the play room. The bathroom comes off the side here and the door down the end it the main bedroom...sorry no pictures on here of that tonight.

This is the enterance way at the door at the front again...so we did a big circle really....

Sorry about all the gaps in the photos..I am slack tonight. I will get better photos...but at least this gives an idea. It is a nice house. I still miss my old one......we have tenants chosen for that house now.

The bone marrow results. The people at the IMVS transplant lab have now looked at my slides. They are confused by my marrow and are not willing to give me a count of my blasts just yet. They said my marrow is so confusing and different with the other FA cells that it is hard to tell what are the normal cells of FA which are abnormal cells and what are blasts.....this has always been the way with my marrow and why I insist on this lab doing the count. So, they are pulling up all my slides of the last number of years to compare because they need to get a feel of how my marrow is...what is "normal" for me so they count correctly. At least they are not just counting with what they "think" could be blasts but comparing and getting familiar with my past slides again. This should enable them to give me a more accurate count. It has only taken them 5 weeks to get to this (ahhhhhhhh!!!!!) I have an appointment with this haematologist to discuss how inappropriately this was done. The slides should have been looked at 5 weeks ago and not left til now...of when they are confused and finally are doing as I ask...frustrating but they are taking me seriously. It is not surprising about my marrow...I have always had marrow that looks strange like this.

It is my birthday in a week and I will be 30. I made it to 30 with FA!!!! Wow...this calls for a celebration so on the 16th May I am having a party that is formal wear in a cottage in the hills. Girls are wearing evening gowns and men...suits with bowties or ties. I have a new dress and it is beautiful. I feel like a bride again. I will post pictures. It will be a grand even to celebrate my life. The meal is made up of nice finger food equal to a 4 course meal! I feel like I am attending a ball in my dress!

Love you all,

Charisse

Hello Friends and Family,
a while back one of my friends turned 30 and they had a dress up party. We were all supposed to come dressed up as someone from our childhood. Does anyone remember the movie, "Annie"? Well that was a movie from both Alan and my childhood. So I dressed up as Annie and Alan was dressed up as Punjab, daddy Warbox (sp?) personal body guard...hehe. He does wear a uniform in the movie but Alan decided to wear this.....he was Indian man...well kind of....and so Alan used body paint. Hehe....Annie is supposed to be 8 years old...so that is what I was supposed to look like. The toy dog, which is a handbag...was meant to be "Sandy" the dog and as I entered the party I began by singing, "Dumb Dog, why are you following me????" It was a really fun night. Alan looks so amusing...hehe...they were good costumes.....
Off and onto another subject now..........

So we have been in the new house for 2 weeks now.

We are settling into our new house ok. I still feel a bit lost at times. I need to go through the house and start taking lots of photos! I have some here of Isaac in his new back yard. He was so excited. He said, "take a picture of me here, mummy"...so I did one of him on the swing.....and one of him on his little table and chairs and one on his bike and so on and his snail rocker. He likes to make funny faces. At the bottom.....the last photo is a dark photo of our fire place. The cat, Matilda, adores the open fire. It is a gas flame but still open fire and is lovely. I will get more photos.

So my doctor finally contacted us again. My dad has needed to help us because he is not communicating well with us. We needed to give him a push.....anyway, he said in an email today that I should have my results at the end of the week, probably tomorrow. There has been much involved since I explained everything to you all. I know that this all means that when I see the doctor on the 16th...there are some serious things to discuss about his patient care. So that is that issue.

So here is a video of us outside our new backyard. Press it twice to play the video. Hmmm...when I say, "there is the pergola area" I was meaning.....the patio...hehe.....the pergola is in a different place. Isaac is a bit feisty on this video. I will be getting more videos and pictures but that is all for tonight. Thanks for checking up on me....wow...it is getting late and I must go to bed. Love Charisse

bone marrow results

Hi People,
it has been about 4 weeks since my bone marrow biopsy/aspiration. I was not going to write about this issue but I need to. I got the results of my blast count from the smaller lab. The smaller lab tends to count my blast count higher than the transplant lab. FA bone marrow has different cells in its marrow. Some of these cells appear like blasts....so someone who is not experienced can accidently count these FA cells as being blast cells which are baby white blood cells. Baby white blood cells can become out of control and grow in numbers.....this is called leukaemia. I have had pre-leukaemic marrow for a long time. I have my marrows done privately because of anxiety.....so I can have an anaesthetic. If you have it publicly they don't put you asleep and my last episode of that was terrible...I was wide awake and kicking and very traumatised...so now I have it done privately so I can have a full anaesthetic. This private, small lab takes the slides first because it is private and then the transplant lab is sent the slides as well for the more experienced assessment.
Results of the past years show clearly how someone has miscounted my blast because they are not experienced with FA marrow........ 2006 blast count 14%, 2007 blast count 10% and this year came back at 13%. These are all uncomfortably high. A normal blast count is under 5%. However, in comparing this with the transplant lab.....a count of 14% was recorded in 2006 at the transplant lab was 6% and last year 7% as opposed to 10%. The general bone marrow results that have come back at the private lab have said "even though the blast count appears to have risen to 13% this year, the marrow has no significant change and is currently stable". This is good...and I know human error plays a huge part in counts.....like going from 14% to 10 and then to 13%.....same as the IMVS lab showing 6% and 7%....human error. The whole marrow needs to be considered to see if there is any change but it is good there is no significan change. However, I am still uncomfortable with 13% count and am eager to know what the transplant lab recorded.

My doctor has been SO difficult this year. I know a lot of people respect doctors but when someone is wrong.....we need to admit this. I feel manipulated and he is being extremely inappropriate. Firstly, he forgot I had a bone marrow biopsy so didn't order my slides to the transplant lab....understand that a blast count ONLY takes 2 to 3 days to count and now it is 4 weeks! I have been upset and anxious and cannot close the door on this years results yet. The haematologist allowed a "newer doctor" to do my counts.....who actually also works for the private lab....we found this out at the beginning of last week. I am not happy with anyone doing my counts from this private lab...and I wanted a second opinion from the transplant lab because this lady has probably NOT seen FA marrow before and this is crucial I have an experienced person look at my count as well as this small lab. So we challenged the doctor, nicely, in an email to have the senior doctors at the transplant lab do my count AGAIN...so that I have someone experienced also counting my count.......somewhere in this story there was confusion as the haematologist expressed that this "newer doctor" could not give me a count...and may be she didn't want to incriminate her smaller lab.......it is a MESS. All of this to just have a blast count given to me. The haematologist did not contact us all last week...so today we rang him because he promised us that this lady at IMVS transplant lab would be getting my slides to do my count ...she is experienced. He told us we could not ring her direct because it is inappropriate so we have been waiting for him to give us results. So we rang today and he TOLD ALAN OFF!!!! I couldn't believe it. He was really cross with us (what he said on the phone) because we "put down his collegue" in suggesting that she did not have the skill to count my blasts and he trusts her totally so we had no right to suggest we wanted another count because he trusts her. This is totally inappropriate....we all know how rare FA is and if a doctor has never seen marrow....well ...a complicated marrow...they are not experienced enough. We make life decisions on these counts and as patients...WE have TOTAL right to ask for the transplant lab to do the count....AND to want a second opinion. He had no right to be cross...and in the end...still didn't give us our results and insisted that this particular person will have the slides this week....there is a lot more I could say about all this but some people may take it as inappropriate. This doctor is being unethical and no one can tell me I can't have a second opinion. No one can tell me that I should be happy with the smaller, private labs answers because he trusts this doctor.....I should have the big lab doing my marrow.......I will not stand for this and I am very cross. They cannot hold back my count from me....but he insists on saying, "it looks similar to last year" but not actually telling me what my count is...this is wrong. So we went above him today and rang the lady who is supposed to have my counts.......apparantly she has not done my marrow for 2 years or so and my doctor is telling fibs....this either shows that he has not allowed me to call this doctor because he is lying or he has no clue as to who my slides go to...this is inappropriate.....totally unethical. He has not done right by me as a patient and I have spent 4 weeks thinking that my count is being done with the normal, big, experienced lab....only to find out all of this...and my doctor has REASSURED us that this lady has been doing my counts.......well he must have not bothered to check this detail and assumed..........SO this transplant lab doctor has now taken our phone number and is going to investigate for us and knows how important it all is and she mentioned that if our doctor is cross he will have to get over it...........
4 weeks of waiting and I am getting more and more anxious...it has been hard waiting for my results. I certainly hope the transplant lab counts my blasts as being lower than 13%. 13 % is not favourable......I am not planning to transplant but how scary if anything has progressed....it is encouraging that the general report says no significan change and being stable but until I get these results from the bigger lab...I cannot put it to rest in my mind.
I would not usually share this with people. I don't want people to think I am out to get doctors...however, I am not going to be manipulated by them because they think they are God. Having accurate results for FA is very important. This disease is really hard to deal with on good days and I don't appreciate it being so hard to get results and there is NOTHING wrong with requesting a second opinion or a bigger and more experienced lab to do my results.

This is what has been going on and I needed an outlet. I feel outraged. So please keep praying for my results...and don't let doctors push you around. It is not their life that they are dealing with...it is yours....we are their clients and we pay for their assistance and help....they are not meant to do any harm....emotionally or physically and I am very disappointed.

Thanks for reading and listening,
Love Charisse