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

Moving House

Hi Guys,
quick update.....we officially moved house today. I feel real strange. This house does not feel like home yet. I suppose I should not expect to feel like I am at home straight away but it makes me feel anxious when I feel a bit disorientated. I am missing my old home tonight. However, I will ge to say a proper "good bye" to it in the next couple of days...and it is still our home...we are just renting it out.
Isaac wanted to be at our old home tonight when I put him to bed......he loves the new house but I think he doesn't want to stay here permanently right now...kind of how I feel. i struggle with change...hehe....I feel like we can have a holiday in this house but then I want to go back "home". I suppose once everything is packed away I will feel like it is more homely.
I don't have proper internet connected here yet...I am currently on Alan's laptop using his wireless network.
Bone marrow results are being delayed..not because of the lab...but I have some issues with the doctors right now which I am trying to clear up. It is unacceptable and anxiety gets worse the longer they take to sort themselves out...this is the worst they have ever been with ringing me back and following up my results. However, at my appointment next I will be giving them a HUGE talking to.
Nothing else to say really. I have my flu injection tomorrow....winter is coming up!
Love you all,
Charisse

An Everything Update!!!

Hi All,
I thought I would take a moment to update my blog. I have been so busy. We are moving in about 9 days...hang on...let me count.....10 sleeps. We have been packing like crazy and finishing our back yard. We have had some surprises along the way. After doing our back yard the other week we found termites in all the leaf mulch! Ahhhh...how annoying. We have had no termites at all at our house and then after we do the back yard and plant the shrubs we discover this...well Alan did. So we had someone out to check our house. There are none in the house but the behaviour of the termites in our yard is odd...that is what we are told. They have taken a sample so that we know what to do next. There is a huge war going on. The black ants eat the termites. Hehe...I never knew that what they show in the "ANTZ" movie is actually true where the black ants go into battle with the termites. Anyway, they are trying to work out where they have come from. Apparently they could not have come with the leaf mulch because termites have to report back to their queen every 30 hours or something so they would all be dead! Also...we have been told that they like to be underground but they are fat and healthy and sitting just under our mulch! So...we will find out soon. No tenants yet for our house...we are renting it out. We will get this sorted...more money though! Ahhhhh!!!!!!


Also, I had infusion on the Friday last week and that went well. I have felt a bit anxious since then. IVIG can actually change the way I perceive things and I become more anxious but the reaction is starting to wear off now. I felt "OK" on Saturday and so was silly when I packed 3 BIG boxes to pack and then cleaned out the bathroom and our main room of junk. I exhausted myself and had a terrible time with infusion the next day. I couldn't pick up my arms and legs. yep, sounds strange. I was so exhausted and "infusionasised" and in pain that I was in bed for most of the next couple of days. I slept til 1pm and only managed a shower at 3pm on that Sunday. I felt sick and horrible for half the week. Hmm...I must remember to take it easy after infusion. I also pulled my incision area on my tummy and where I had the bone marrow biopsy/aspiration...I agravated that. Yep, I should have slowed down! Now I have paid for that physically. So I didn't really enjoy the first half of this week.

Isaac also got sick. He woke up on that Sunday that I was so exhausted..with a croup like illness. Alan had to sit in the bathroom with the shower going for him to get enough steam to stop coughing! So Isaac was home from school Monday and Tuesday. Last time he got croup it took him 2 weeks to clear up. However, Wednesday he was much better and off to school and then Thursday he seemed his usual self. He is now completely well.

School holidays for the next 2 weeks....term break. We will be moving but I am making sure Isaac has some activities for these holidays despite the business of moving. On Tuesday we will be going swimming. I try and lap swim on Tuesdays....I did do some gentle exercises in the pool on Thursday since I felt so sore...the warm pool was good for me. So I will bring Isaac with me to swim on Tuesday and mum will be there. We will take it in turns to swim with Isaac and lap swim. Thursday we are planning on going to the zoo with Isaac. Hopefully I will do ok. I should be feeling good. I always feel good the week after infusion reaction. We will make some play dates with Isaac's friends and MOVE!!!

Isaac had this beanie bear dressed as a hippo from the library at school. He had it for a week and then we had to take it everywhere and take photos and write a story in the book for the day he had library. Here are some cute pictures. They are so dark..sorry...I am not as good at taking pictures as Teresa (hehe..you seem to be SO good at it!!!!). Anyway, we went to see a friend who is quite unwell and in hospital. So we took a quick picture but we were in the shade...hence the darkness. This beanie bear came with us.
Then Isaac and Henrietta..the beanie bear's name......had some dinner together. Nothing like fish fingers and potato smiley faces and brocholi! Isaac loves it - with tomato sauce!

Oh this is Minnie the Mouse......this is what preschool used to send home with Isaac for a couple of days. We had to do the same thing...take it wherever we went and take pictures and do something in the book for him to read to his class.

Here is Alan, Isaac and Henrietta......the beanie bear.....planting shrubs in the back yard.

Ah yes.....here is another video of Alan and Isaac working in the yard and planting the shrubs! How embarrassing! My voice sounds really low! I was obviously talking a bit gruff! This is where we found all the termites! The yard looks good though. I think you need to click on this twice to get it started.

Bone marrow Results. Well I have those other ones from the smaller lab and rang for the ones from the transplant lab only to have my doctor say, "I didn't know you had a bone marrow biopsy!". How vague. How vague. So I wonder who wrote my referral. Luckily it is the right stuff for what I am having tested! So the IMVS lab have not received my slides yet from my marrow and my haem/onco who is the head of transplants will have them moved to the transplant lab and have his people look at it and then I can get the results! Ahhh...more waiting. It is hard waiting because I feel so anxious about everything! Sometimes this doctor seems so vague. Sometimes the more intelligent the doctor, the vaguer they are...sorry, I don't mean to upset anyone by saying that. I suppose that is not true but sometimes it seems true. At least he is now getting the transplant lab to look at my stuff. They are used to my marrow. It has been years and years that I have been having my FA stuff looked at with them.

So I will let you know when I know!

I am going to go. Thanks for checking up on me!

Love Charisse

Our New House!

Hello Everyone,
Boy some of these photos are shocking. Trying to get a shot of Isaac in his school uniform is impossible. He is constantly moving, the lighting isn't good and our camera is sometimes just not that good! Also, these photos are kind of out of order but I don't have more time to fix all that right now. This will have to do. This photo here is of Isaac in his full school uniform and in real life...he looks gorgeous but you cannot really tell in these photos! Grr...oh well. Will try another time. This is inside our current house.


This is Isaac in his sport's uniform...once again really hard to get a shot of him and he was insisting on wearing his grey socks and black school shoes instead of his sport's socks and sneakers...but he is cute.

This is him again, but in real life, he was protesting to us bringing the camera out at all!

Ok, what are we doing here? It is night time, hence the blackness and bad photo. See the 3 chairs......Isaac lined them up and we are in a movie produced by him. That is me and my mother. It was really funny. Isaac was doing all the music and singing and he was performing it to the right of us so we had to turn our heads....rather than performing in front of us..but this is how it was done. Below, at the very bottom is a video Alan took of the whole DVD performance. You can hear me laughing...very interesting. Feel free to watch it for fun. It is hard to see much because it is night time but you can see some of it...and hear him constantly singing and talking! hehe....click on it twice...at the bottom.

Ahhhh...yes...now this is our new house. Once again a little out of order. This is a picture of part of the back yard. We are on a hill so our back yard looks out over the hill and goes down these steps to another section where there is a shed and lots of bushes.

This is the front of our new house.

This is what the porch looks like behind all those bushes and down the hill!!!

Now, I have got some bone marrow biopsy results...the first lot of results. I don't really want to share until I have the second lab back, only because then everything is more accurate. We have a smaller lab do the test more quickly and then the transplant lab gives me my results as well. Usually the smaller lab get confused between some FA cells and blast cells and the IMVS lab is more accurate in determining all these cells we can have in our marrow when we have FA. So...before I share with everyone, I always wait for the other lab results as well. The cytogenetics or chromosome results will be back in about 4 weeks. Our lab here is quite backed up and so if the cytogenetics take a little longer than that...it is not surprising...but at least the other results come back within a week...the transplant lab...only because it is backed up...may take another week to give me those other results.

Now, the video below. It is quite cute. You may have to click on it twice to make it work. Enjoy it!

We have been busy packing for our move in a couple of weeks. I am a little overwhelmed but it will get there.

I have a routine MRI coming up on the 29th April...and looking into the throat issue of feeling a lump in my throat...it is gone now..and the pain...but it happens in a cycle and I want to know why!!!

Well, I really should get some packing done before Isaac comes home from school. I am lazy today. I didn't sleep too well last night and so I slept in real late. I was planning on getting up early and going swimming...but another reason had to stop me from swimming....but then I could not even get up this morning until real late!

Tomorrow is my IVIG infusion...please continue to pray that I have no bad reactions. Constantly procedures to have done!

Enjoy the video below!!!


Isaac's DVD Production!

Lots of love,

Charisse